Can't stop staring at people
- Thread starter John S
- Start date
This problem is killing me and i feel like i am in hell.I want to cry out loud, nobody understand my problem, my parents thinks that i do that by myself but i don't stare its my brain doing this and i can't talk to people becoz i start to stare in eyes when talking.
Are these symptoms in you?
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supersix
Active member
yes i also have this. it was intense before. but now not that much. you can show this forum to your parent and tell them what actually it is. but some people wont accept anything if it is not come from professionals. so i will say take your mom and dad with you to a doc. it will make things easier. i feel like your parents should have consider your symptom as a form a form problem and should not accused you by now. so far its already been a year.
Symptoms
- I stare in people eyes while talking and so much focused on eyes
-People got irritated or frighted when sit near me
-In my class i stare at my teachers and can't listen to them whenever they see me i stare them
-My whole class got irritated due to i stare at them directly and with my pheripheral vision
-While walking down the street i can't stop staring at people coming in front of me and especially women
-People get irritated in bus who sitting before me and at sides.
I told doctor that i always focus on people
I gone 3month to that doctor
he ask me that did you hear sounds when sitting alone in home and i told no.
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supersix
Active member
well i had all of this but now with less intensity. see yourself a neurologist. an immunologist. search online which hospital is best in your own area.
not only that i was unable to look at people eyes at my earlier stage of my disorder. those days were like hell.
not only that i was unable to look at people eyes at my earlier stage of my disorder. those days were like hell.
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Why neurologist or immunologist? Is this not a mental disease?
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supersix
Active member
no its not a mental disease. if it was only psychological problem we all would have cured by now. the problem is physical which manifest as psychological problem. dont you see you are sensitive to sound, you are paranoid, you cant concentrate on class, you cant walk on street without having intense anxiety, you cant control your eye movement , you hit the lowest bottom of self confidence, you cant think clearly , i also suspect you might have bunch of phobias, also suffer from inferiority complex none of this is normal mate. this onset ocd, anxity, staring none of this simple mind trick. thats why i am suggesting you see yourself a neurologist. i dont know what wrong we did in life we have to go through something like this.
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supersix
Active member
This post collects the most frequently asked questions over the years. We're not doctors so nothing here should be taken as medical advice. We're parents struggling to understand this disease and these comments are based on our understanding.
If your question isn't here, start a new thread on your question or join a thread near the topic. There's likely another person on the forum who has a similar question and maybe an answer.
< Updated Dec 6, 2009 - reorganized into categories>
-----------------------------------------------------------------------------------------------------------------------------------------
Signs and Symptoms
Q: How do I know if my child has PANDAS?
A: That's actually the hardest question to answer. We don't know. Most parents have gotten to this forum because something has already gone really wrong with their child and they are searching for an explanation. Your child is likely suffering from or been diagnosed with either an obsessive compulsive disorder or a tic disorder. The key signs of PANDAS are typically the sudden onset and unusual pre-cursor symptoms like daytime urinary frequency. Other symptoms can be found here: http://www.latitudes...?showtopic=6128 . A positive throat culture for group A Beta-Hemolytic streptococcus at time of exacerbation and remission of symptoms after treatment of GABHS is a strong indication of PANDAS.
Q: Is PANDAS just misdiagnosed Sydenham Chorea?
A: We don't know. But it appears from studies by Kirvan and others that PANDAS has a lot of similarities to Sydenham Chorea. About 70% of Sydenham Chorea cases have OCD symptoms. This number also seems to be true for PANDAS cases. In the original definition of PANDAS, Dr. Swedo excluded those cases that had a history of Acute Rheumatic Fever or were exhibiting the explicit Sydenham Chorea (also known as St. Vitus Dance).
Q: Is it possible that my PANDAS child reacts when others have strep?
A: Yes. There is good anecdotal evidence from parents on this forum that exacerbations in the PANDAS child are correlated with family members contracting GABHS. One parent relayed the experience as being similar to a peanut allergy -- instead of the throat closing the basal-ganglia gets affected.
Q: Is it possible for a child to have strep without a sore throat?
A: Yes. Strep can colonize on many parts of the body (most notably around the genitals or a recent cut). In addition, some children do not exhibit "classic strep throat symptoms" although they may be positive for GABHS.
Q: What does OCD look like in a child?
A: There's a great thread regarding this at http://www.latitudes...?...ic=6153&hl=
A short summary of things from that thread are:
obsessive handwashing, due to fear of germs or stickiness or chemicals
obsessive need to pee
obsessively sure that all pee or poop is not out, or that they are not clean - often leading to a compulsion of obsessive wiping
need to confess "bad things" such as unkind behavior to another child
feeling that they have cheated on tests or in school
constantly asking for reassurance on the same/similar topic (ex: am I sick, will I get sick, did I do that)
inability to make a previously simple decision for fear of consequences (sometimes logical, sometimes just a fear of it being a wrong decision).
worry of choking on food - asking for food to be cut into small pieces
...
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Pathogenesis (cause)
Q: Is PANDAS caused by Strep?
A: Not exactly. PANDAS is currently thought to be caused by the immune system creating an antibody to Group A Beta-Hemolytic Streptococcus and a breach in the blood-brain-barrier due to inflammation from the immune systems reaction. It seems to be the combination of the two -- the antibody and the breach. Some researchers have reported that there is inflammation of the basal ganglia (leading to symptoms), while others report that the antibody interferes with neuronal signalling. The combination of the antibody, inflammation and the breach of the blood-brain-barrier appear to cause the neuropsychiatric symptoms of OCD and tics.
Q: How do antibodies get across the BBB?
A: We don't exactly know. One recent paper indicates that T-cells are attracted to weaknesses in the blood-brain barrier and are able to cross the barrier. Once across the T-cells bind with macrophages and cause inflammation. The inflammation brings other T-cells and eventually a breach in the BBB occurs. It appears that either antibodies or B-cells are now able to cross causing the interaction with the neuronal tissue.
-----------------------------------------------------------------------------------------------------------------------------------------
Tests: Strep Culture (rapid and 72 hr agar plate)
My child's PANDAS symptoms are surfacing and the strep test was negative, what's going on?
A: This is an area of active research debate. There are really two questions here. How accurate is a strep test for detecting strep and is GABHS the only trigger for PANDAS symptoms?
PANDAS researchers have only looked at symptom exacerbations associated with strep throat; however, GABHS can colonize elsewhere on the skin, sinuses, eye, ear, gastrointenstinal area or peri-****/******l areas.
The accuracy of the throat culture is highly dependent on the sample. As anyone will tell you, getting a culture from a squiggling 5 year old is tough.
Finally and most importantly, the exacerbations are thought to be from an antibody to GABHS getting across to neuronal tissue (i.e., crossing the blood brain barrier). These antibodies can exist for 4-6 weeks and thus if some other virus or bacteria causes inflammation of the blood-brain-barrier the antibody could then cross.
This is a long way of saying that we don't know, but many on this forum will tell you this is exactly what happens for their child.
Q: We had a negative throat culture, does that rule out PANDAS?
A: No. Group A Beta-Hemolytic Strep can colonize on the skin or the sinuses (plus ear infections, meningitis, pneumonia, GI infection, peri-****/******l infections). A throat culture can confirm GABHS colonization but not rule out PANDAS.
Q: My doctor has said that my daughter is a strep carrier and that the positive strep culture is meaningless. Is this true?
A: About 5% of children carry strep without any other symptoms. This is thought to be caused by some interaction with other flora in the throat or some defect in the immune system that prevents it from removing the offending bacteria. There is mounting evidence that carriage is not as benign as once thought. Most doctors only treat asymptomatic carriers if someone else in the family is immuno-compromised. Carriage is typically broken by stronger antibiotics like azithromycin or clindimycin.
Q: Can you get strep somewhere other than the throat?
A: Yes. PANDAS is associated with Group A Beta-Hemolytic Strep and this form of strep can exist on skin. There are many diseases (such as Kawasaki's disease and Impetigo) that are caused by Group A Beta-Hemolytic Strep. Skin GABHS infections do not show a rise in ASO titers.
Q:If my child has PANDAS should I have strep tests done on siblings?
A: Yes. Many on this forum will say that when their PANDAS child was in an exacerbation, a sibling was culture positive for strep. Some call their PANDAS child a strep detector.
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Tests: Streptococcal Exotoxin antibody tests (ASO and AntiDNAseB)
Q: My child has a positive throat culture. Should I also have tests for ASO or Anti-DNAseB?
A: We'd recommend against it. The unfortunate reason is that some doctors think that if your ASO comes back negative you can't have PANDAS. That is not true. ASO has a 46% false-negative rate. That's almost the same as a coin flip. If you have a positive throat culture, treat it. If it is associated with significant exacerbation, PANDAS is probable.
Q: My child was negative for a strep culture. Should I have get ASO or AntiDNAse B tests?
A: Yes, ASO and Anti-DNAse together are better than either test individually; however, you still need to determine when you likely were exposed to strep. ASO rises approximately 1-4 weeks from colonization and Anti-DNAseB rises between 6-8 weeks from colonization. Even then ASO and Anti-DNAse B together fail to show a rise in 31% of children with strep colonization.
Q: Is a single measurement of ASO or Anti-DNAse B enough?
A: Actually no. titers have to be measured at two points (typically a week apart). ASO is typically measured at 4 and 5 weeks from the date of suspected infection and Anti-DNAseB measured at 6 weeks and 8 weeks from the suspected event. The two data points are needed to look for a rise. Absolute values are not as important as the rise/fall of the titer. For this reason it is important that both samples are done by the same lab. In the absence of having two titers, many labs use a measure known as the "upper-limit-of-normal". This value is helpful if the measured value is significantly higher than the upper limit. If it is lower than the ULN, then typically two samples are needed to look at the slope/trend.
Q: We had low ASO titers, does that rule out PANDAS?
A: No. Anti-Streptolycin O is a measure of an exotoxin of Group A Beta-Hemolytic streptococcus. Although most strains of GABHS do produce Streptolycin-O, cholesterol (particularly in the skin) can absorb this exotoxin. In one study, ASO did not rise in 46% of patients despite positive throat cultures and perfect timing for taking the ASO titer. So ASO can confirm a previous strep infection but cannot rule out strep or PANDAS.
If your question isn't here, start a new thread on your question or join a thread near the topic. There's likely another person on the forum who has a similar question and maybe an answer.
< Updated Dec 6, 2009 - reorganized into categories>
-----------------------------------------------------------------------------------------------------------------------------------------
Signs and Symptoms
Q: How do I know if my child has PANDAS?
A: That's actually the hardest question to answer. We don't know. Most parents have gotten to this forum because something has already gone really wrong with their child and they are searching for an explanation. Your child is likely suffering from or been diagnosed with either an obsessive compulsive disorder or a tic disorder. The key signs of PANDAS are typically the sudden onset and unusual pre-cursor symptoms like daytime urinary frequency. Other symptoms can be found here: http://www.latitudes...?showtopic=6128 . A positive throat culture for group A Beta-Hemolytic streptococcus at time of exacerbation and remission of symptoms after treatment of GABHS is a strong indication of PANDAS.
Q: Is PANDAS just misdiagnosed Sydenham Chorea?
A: We don't know. But it appears from studies by Kirvan and others that PANDAS has a lot of similarities to Sydenham Chorea. About 70% of Sydenham Chorea cases have OCD symptoms. This number also seems to be true for PANDAS cases. In the original definition of PANDAS, Dr. Swedo excluded those cases that had a history of Acute Rheumatic Fever or were exhibiting the explicit Sydenham Chorea (also known as St. Vitus Dance).
Q: Is it possible that my PANDAS child reacts when others have strep?
A: Yes. There is good anecdotal evidence from parents on this forum that exacerbations in the PANDAS child are correlated with family members contracting GABHS. One parent relayed the experience as being similar to a peanut allergy -- instead of the throat closing the basal-ganglia gets affected.
Q: Is it possible for a child to have strep without a sore throat?
A: Yes. Strep can colonize on many parts of the body (most notably around the genitals or a recent cut). In addition, some children do not exhibit "classic strep throat symptoms" although they may be positive for GABHS.
Q: What does OCD look like in a child?
A: There's a great thread regarding this at http://www.latitudes...?...ic=6153&hl=
A short summary of things from that thread are:
obsessive handwashing, due to fear of germs or stickiness or chemicals
obsessive need to pee
obsessively sure that all pee or poop is not out, or that they are not clean - often leading to a compulsion of obsessive wiping
need to confess "bad things" such as unkind behavior to another child
feeling that they have cheated on tests or in school
constantly asking for reassurance on the same/similar topic (ex: am I sick, will I get sick, did I do that)
inability to make a previously simple decision for fear of consequences (sometimes logical, sometimes just a fear of it being a wrong decision).
worry of choking on food - asking for food to be cut into small pieces
...
-----------------------------------------------------------------------------------------------------------------------------------------
Pathogenesis (cause)
Q: Is PANDAS caused by Strep?
A: Not exactly. PANDAS is currently thought to be caused by the immune system creating an antibody to Group A Beta-Hemolytic Streptococcus and a breach in the blood-brain-barrier due to inflammation from the immune systems reaction. It seems to be the combination of the two -- the antibody and the breach. Some researchers have reported that there is inflammation of the basal ganglia (leading to symptoms), while others report that the antibody interferes with neuronal signalling. The combination of the antibody, inflammation and the breach of the blood-brain-barrier appear to cause the neuropsychiatric symptoms of OCD and tics.
Q: How do antibodies get across the BBB?
A: We don't exactly know. One recent paper indicates that T-cells are attracted to weaknesses in the blood-brain barrier and are able to cross the barrier. Once across the T-cells bind with macrophages and cause inflammation. The inflammation brings other T-cells and eventually a breach in the BBB occurs. It appears that either antibodies or B-cells are now able to cross causing the interaction with the neuronal tissue.
-----------------------------------------------------------------------------------------------------------------------------------------
Tests: Strep Culture (rapid and 72 hr agar plate)
My child's PANDAS symptoms are surfacing and the strep test was negative, what's going on?
A: This is an area of active research debate. There are really two questions here. How accurate is a strep test for detecting strep and is GABHS the only trigger for PANDAS symptoms?
PANDAS researchers have only looked at symptom exacerbations associated with strep throat; however, GABHS can colonize elsewhere on the skin, sinuses, eye, ear, gastrointenstinal area or peri-****/******l areas.
The accuracy of the throat culture is highly dependent on the sample. As anyone will tell you, getting a culture from a squiggling 5 year old is tough.
Finally and most importantly, the exacerbations are thought to be from an antibody to GABHS getting across to neuronal tissue (i.e., crossing the blood brain barrier). These antibodies can exist for 4-6 weeks and thus if some other virus or bacteria causes inflammation of the blood-brain-barrier the antibody could then cross.
This is a long way of saying that we don't know, but many on this forum will tell you this is exactly what happens for their child.
Q: We had a negative throat culture, does that rule out PANDAS?
A: No. Group A Beta-Hemolytic Strep can colonize on the skin or the sinuses (plus ear infections, meningitis, pneumonia, GI infection, peri-****/******l infections). A throat culture can confirm GABHS colonization but not rule out PANDAS.
Q: My doctor has said that my daughter is a strep carrier and that the positive strep culture is meaningless. Is this true?
A: About 5% of children carry strep without any other symptoms. This is thought to be caused by some interaction with other flora in the throat or some defect in the immune system that prevents it from removing the offending bacteria. There is mounting evidence that carriage is not as benign as once thought. Most doctors only treat asymptomatic carriers if someone else in the family is immuno-compromised. Carriage is typically broken by stronger antibiotics like azithromycin or clindimycin.
Q: Can you get strep somewhere other than the throat?
A: Yes. PANDAS is associated with Group A Beta-Hemolytic Strep and this form of strep can exist on skin. There are many diseases (such as Kawasaki's disease and Impetigo) that are caused by Group A Beta-Hemolytic Strep. Skin GABHS infections do not show a rise in ASO titers.
Q:If my child has PANDAS should I have strep tests done on siblings?
A: Yes. Many on this forum will say that when their PANDAS child was in an exacerbation, a sibling was culture positive for strep. Some call their PANDAS child a strep detector.
-----------------------------------------------------------------------------------------------------------------------------------------
Tests: Streptococcal Exotoxin antibody tests (ASO and AntiDNAseB)
Q: My child has a positive throat culture. Should I also have tests for ASO or Anti-DNAseB?
A: We'd recommend against it. The unfortunate reason is that some doctors think that if your ASO comes back negative you can't have PANDAS. That is not true. ASO has a 46% false-negative rate. That's almost the same as a coin flip. If you have a positive throat culture, treat it. If it is associated with significant exacerbation, PANDAS is probable.
Q: My child was negative for a strep culture. Should I have get ASO or AntiDNAse B tests?
A: Yes, ASO and Anti-DNAse together are better than either test individually; however, you still need to determine when you likely were exposed to strep. ASO rises approximately 1-4 weeks from colonization and Anti-DNAseB rises between 6-8 weeks from colonization. Even then ASO and Anti-DNAse B together fail to show a rise in 31% of children with strep colonization.
Q: Is a single measurement of ASO or Anti-DNAse B enough?
A: Actually no. titers have to be measured at two points (typically a week apart). ASO is typically measured at 4 and 5 weeks from the date of suspected infection and Anti-DNAseB measured at 6 weeks and 8 weeks from the suspected event. The two data points are needed to look for a rise. Absolute values are not as important as the rise/fall of the titer. For this reason it is important that both samples are done by the same lab. In the absence of having two titers, many labs use a measure known as the "upper-limit-of-normal". This value is helpful if the measured value is significantly higher than the upper limit. If it is lower than the ULN, then typically two samples are needed to look at the slope/trend.
Q: We had low ASO titers, does that rule out PANDAS?
A: No. Anti-Streptolycin O is a measure of an exotoxin of Group A Beta-Hemolytic streptococcus. Although most strains of GABHS do produce Streptolycin-O, cholesterol (particularly in the skin) can absorb this exotoxin. In one study, ASO did not rise in 46% of patients despite positive throat cultures and perfect timing for taking the ASO titer. So ASO can confirm a previous strep infection but cannot rule out strep or PANDAS.
supersix
Active member
Q: We had low Anti-DNAseB and ASO titers, does that rule out PANDAS?
A: Unfortunately, No. First, the tests have to be taken during the rising titer period. ASO tends to rise 1-4 weeks post infection and Anti-DNAseB tends to reach a peak at around 6-8 weeks. Even with perfect timing of titer draws, 31% of children with confirmed colonized strep did not have a rise in either ASO or Anti-DNAse B. So anti-DNaseB and ASO can confirm a previous strep infection, but cannot rule one out.
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Tests: Antineuronal Antibodies Tests
Q: What are Cunningham tests?
A: Kirvan and Cunningham have been studying specific antibodies to GABHS. Cunningham has an open trial where she is recruiting patients to investigate the relationship between these antibodies and PANDAS symptoms. Many parents on this forum have participated in the study. These studies are still research studies and are not yet diagnostic for PANDAS -- but we're all hopeful they might be soon.
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Tests: Predinsone Burst Test
Q: What is the purpose of a prednisone burst and why does it work?
A: The prednisone burst is used to temporarily slow down the immune system response by reducing inflammation (from T-cells) and reducing antibody production by B-cells. It is thought that prednisone helps close the blood-brain barrier temporarily. Essentially, abatement of symptoms in a prednisone burst helps indicate that the issue is auto-immune. It is important to know that the prednisone burst is a short term treatment (typically 5 days) and is not intended as a long term treatment. Prednisone does have significant side effects particularly for any long term use. Prednisone has no known positive effect on non-PANDAS OCD or non-PANDAS tics.
Q: How long after starting antibiotics should I expect a response?
A: In severe exacerbations, some parents have reported a response within 24 hours. However, more parents have reported significant improvement 10-12 days post initiation of antibiotics. Anecdotal evidence indicates that exacerbations can last for many weeks (often 4-6 weeks). Parents with children on prophylactic antibiotics seem to report that subsequent exacerbations do occur but are less severe than without antibiotics.
Q: How long after starting a prednisone burst should I expect a response?
A: Similar to antibiotics, most parents have reported significant immediate improvement during severe exacerbation and temporary remission of symptoms at 10-12 days post initiation of prednisone. This test seems to vary with age, symptoms and gender. Caution should be noted here that parents of children with diagnosed Tourette's Syndrome have noted that symptoms actually got much worse during a prednisone burst. As such, there should be good clinical reasons for a PANDAS diagnosis before using a prednisone burst.
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Treatment: Antibiotics
Q: If PANDAS is caused by an antibody, why do so many parents have their kids on prophylactic antibiotics?
A: The antibody is an immune response to Group A Beta-Hemolytic Streptococcus. Many of the parents on this board have seen that subsequent exacerbations are much more severe (similar to the case for other auto-immune disorders to GABHS such as Sydenham Chorea). The prophylaxis is to minimize colonization and infection by GABHS.
Q: Can Amoxicillin and Augmentin be given only once a day for prophylaxis?
A: Apparently not. Amoxicillin and Augmentin both have extremely short half-lives (1-1.5 hours). This means that most of Amoxicillin/Augmentin is removed from the body in ~10hours. If a dose is skipped, the child is actually unprotected for 1-2 days. Azithromycin has a longer half-life (~1.5 days), can be taken once per day and is easier on the GI tract, but there are reports of macrolide resistant strains of GABHS.
Q: Do antibiotics kill Group A Beta-Hemolytic Streptococcus?
A: Not exactly. Antibiotics such as Amoxicillin, Azithromycin and Augmentin slow down the progression of the bacteria and prevent it from rapidly growing. This gives the child's immune system a chance to respond to the infection and kill the bacteria. Antibiotics alone aren't sufficient to eradicate strep, the body's immune system must complete the job.
Q: Which is better amoxicillin, augmentin or azithromycin?
A: This is a matter of considerable debate. Both Augmentin and Azithromycin are more clinically effective in clearing GABHS than Amoxicillin. Some strains of strep can go intracellular (where azithromycin is more effective) and some strains are macrolide tolerant (where augmentin is more effective). Often a parent will try 2 different antibiotics over a period of 2 months to find one that seems to work.
Q: My child doesn't seem any better after 10 days of amoxicillin. Does this mean he doesn't have PANDAS?
A: No. Many children actually need a stronger antibiotic than the standard treatment of amoxicillin. The standard dosage of antibiotics is based on clearing 80% of children who have a healthy immune system. For others who fall outside the standard dosing parameters, typically either augmentin or azithromycin are used. Anecdotally, parents on the forum have found that a month is needed to really evaluate whether a particular antibiotic is working. In addition, some strains of GABHS are more sensitive to one antibiotic versus another. Azithromycin is helpful if the strain is one that goes intracellular, Augmentin is helpful inhibiting extracellular strains.
Q: "Saving Sammy" said they used high dose Augmentin/XR. Why is that thought to work?
A: This isn't exactly known. At very high dosage, Augmentin is bacteriacidal (meaning it actually does kill strep). One theory is that there is a strep infection hidden (perhaps inside cells) and once the cell dies it releases strep into the blood stream. In this case, Augmentin could stop the GABHS before an immune response. There is some good anecdotal evidence for this, but this has not been clinically studied. Some researchers have indicated to parents that Augmentin may be anti-inflammatory at high dose, but there is no clinical studies to support this hypothesis.
Q: Why use prophylactic abs in PANDAS children...why not just wait until my child gets a strep infection and treat it then?
A: There is mounting evidence that each exacerbation has increased symptoms and thus prophylaxis prevents significant psychological and neurological symptoms. Gratefully, there does not appear to be any long-term damage from PANDAS; however, this is still a matter of research.
Q:Should I check for clearing of my non-PANDAS children if treated for strep
A: Yes. About 3 weeks after completing treatment for strep you can check for clearance by getting a negative culture. The dosing levels on antibiotics are designed so that about 80% of children with normal immune systems are cleared with a "standard" dosing of antibiotics. Some strains of strep are harder to eradicate and either longer treatments or use of antibiotics like azithromycin and augmentin seem to be effective on these strains.
Q:Why are doctors so hesitant to prescribe antibiotics or check for GABHS in asymptomatic children
A: The concern is primarily around creating a treatment resisitant form of GABHS. By overprescribing antibiotics, doctors worry that some of the bacteria that is resistant to that form of antibiotic will survive and replicate. Antibiotics slow down the growth of the target (e.g., GABHS) and also helpful bacteria. This means that an antibiotic resistant strain could grow uncontrolled while the normal competing non-dangerous bacteria is held back. It's all a matter of balance and antibiotics do upset that balance. In terms of checking for GABHS in asymptomatic children, this is a matter of considerable debate. The exact reason why some children don't exhibit classic "sore throat" signs or why their colonization doesn't seem to turn into full infections is just not known. There is mounting evidence that asymptomatic carriage is not as benign as once thought, but most doctors have not read these research reports.
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Treatment: IVIG, Plasmapherisis, and Plasma Exchange
Q: What is IVIG and PEX?
IVIG stands for Intravenous Immunoglobulin. Immunoglobulin antibodies, type G, are extracted from donated blood. These antibodies are transferred to the recipient through an intravenous line. IVIG is used in many auto-immune diseases but the exact nature of how it works is not known. IVIG is highly anti-inflammatory and may help T-regulatory cells become re-activated to help remove anti-host antibodies. In addition, some of the infused antibodies may help recognize infected cells or bacteria that was missed by the recipient's own antibodies.
PEX technically stands for Plasma Exchange. It is sometimes used interchangeably (especially on this forum) with plasmapheresis. Plasmapheresis is a process of removing antibodies from the blood stream through filtration. In Plasma Exchange (PEX), another donor's plasma is added on the return so that new antibodies are added (similar to IVIG). Plasmapheresis is used in severe auto-immune diseases because it can address acute antibody levels.
Q: Why does IVIG or Plasmapheresis work?
A: PANDAS is thought to be caused by three events:
the creation of an antibody to Group A Beta-Hemolytic Streptococcus that can react with neuronal tissue
the failure of the immune system to suppress the antibody
a breach of the blood-brain barrier so that a B-cell or the antibody can reach the neuronal tissue
IVIG is highly anti-inflammatory and can close #3. There are also reports that IVIG resets the T-regulatory cells addressing #2. Plasmapherisis works by removing the antibodies in #1. Antibiotics also help with #1 by slowing an infection so the immune system can kill the bacteria. Once the antigen (the bacteria) is removed, the antibodies generally disappear in ~4-6 weeks.
Q: Do I need IVIG or PEX to cure PANDAS?
A: Most of the studies and certainly parents on this forum report that IVIG and PEX are helpful in putting PANDAS in remission, but don't "cure" PANDAS. There are many reports of PANDAS symptoms returning after re-exposure to GABHS. This is why many parents use long term prophylactic antibiotics. It is also important to mention that some parents report that antibiotics used aggressively at initial onset of symptoms seem to put PANDAS in remission.
Q: Is this a chronic condition or will IVIG and PEX fix what’s wrong?
A: We don't know. There is good anecdotal evidence that IVIG and PEX have both been effective at removing 50+% of symptoms and that these treatments with prophylactic followup antibiotics have kept patients in remission for > 1 year. It does appear, however, that the prophylactic antibiotics is critical as many have had a recurrence when their child has been re-exposed to GABHS.
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Treatment : Other
Q:I've read a lot about Ibuprofen, what can it do for my child?
A: Many parents report anecdotally that Ibuprofen (e.g., Advil, Motrin) seems to lessen symptoms. The exact reason is not known. Several recent papers indicate that this could be caused by reduced inflammation of the blood-brain barrier and thereby preventing the anti-neuronal antibodies from reaching neuronal tissue. For those interested in how T-cells cross the blood brain barrier and the effect of ibuprofen on ICAM-1 adhesion modules see http://www.latitudes...art=#entry46222
Q:Where can I find a list of doctors in my area?
A: You can ask on this forum. We've collected some of the names of doctors others have seen here: http://www.latitudes...?showtopic=5023
Q:Why shouldn't PANDAS be treated "like any other case of OCD or tics" like the NIMH website recommends?
A
ANDAS is thought to have a different cause than non-PANDAS OCD and tics. Research studies thus far indicate that children with PANDAS had higher behavioral activation rates on SSRIs see http://mbldownloads....06PP_Murphy.pdf. Anti-psychotics have many serious side effects and there are not controlled studies on the use of these medications on children in the PANDAS subgroup. There has been studies of Cognitive Behavioral Therapy that has shown some efficacy with older PANDAS children; however, the main benefit raised in the report was that parents learned techniques for managing exacerbations. There are not controlled clinical studies on Exposure Response Prevention, but some parents on this forum have tried this technique. Anecdotal reports are mixed on the effectiveness for PANDAS children.
Q: What else should I do to keep my PANDAS child strep-free?
A: It is very important to test everyone in the household for GABHS. Many families have found that there is a someone else in the family (children and parents) with strep during an exacerbation. The positive individual often is asymptomatic and parents and doctors are often surprised when they come back positive. This individual needs to be treated to prevent reinfection of others. Antibiotics don't prevent colonization or infection, antibiotics slow down the infection but the immune system still responds. Be sure to check 2 weeks later to ensure the positive individual cleared.
A: Unfortunately, No. First, the tests have to be taken during the rising titer period. ASO tends to rise 1-4 weeks post infection and Anti-DNAseB tends to reach a peak at around 6-8 weeks. Even with perfect timing of titer draws, 31% of children with confirmed colonized strep did not have a rise in either ASO or Anti-DNAse B. So anti-DNaseB and ASO can confirm a previous strep infection, but cannot rule one out.
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Tests: Antineuronal Antibodies Tests
Q: What are Cunningham tests?
A: Kirvan and Cunningham have been studying specific antibodies to GABHS. Cunningham has an open trial where she is recruiting patients to investigate the relationship between these antibodies and PANDAS symptoms. Many parents on this forum have participated in the study. These studies are still research studies and are not yet diagnostic for PANDAS -- but we're all hopeful they might be soon.
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Tests: Predinsone Burst Test
Q: What is the purpose of a prednisone burst and why does it work?
A: The prednisone burst is used to temporarily slow down the immune system response by reducing inflammation (from T-cells) and reducing antibody production by B-cells. It is thought that prednisone helps close the blood-brain barrier temporarily. Essentially, abatement of symptoms in a prednisone burst helps indicate that the issue is auto-immune. It is important to know that the prednisone burst is a short term treatment (typically 5 days) and is not intended as a long term treatment. Prednisone does have significant side effects particularly for any long term use. Prednisone has no known positive effect on non-PANDAS OCD or non-PANDAS tics.
Q: How long after starting antibiotics should I expect a response?
A: In severe exacerbations, some parents have reported a response within 24 hours. However, more parents have reported significant improvement 10-12 days post initiation of antibiotics. Anecdotal evidence indicates that exacerbations can last for many weeks (often 4-6 weeks). Parents with children on prophylactic antibiotics seem to report that subsequent exacerbations do occur but are less severe than without antibiotics.
Q: How long after starting a prednisone burst should I expect a response?
A: Similar to antibiotics, most parents have reported significant immediate improvement during severe exacerbation and temporary remission of symptoms at 10-12 days post initiation of prednisone. This test seems to vary with age, symptoms and gender. Caution should be noted here that parents of children with diagnosed Tourette's Syndrome have noted that symptoms actually got much worse during a prednisone burst. As such, there should be good clinical reasons for a PANDAS diagnosis before using a prednisone burst.
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Treatment: Antibiotics
Q: If PANDAS is caused by an antibody, why do so many parents have their kids on prophylactic antibiotics?
A: The antibody is an immune response to Group A Beta-Hemolytic Streptococcus. Many of the parents on this board have seen that subsequent exacerbations are much more severe (similar to the case for other auto-immune disorders to GABHS such as Sydenham Chorea). The prophylaxis is to minimize colonization and infection by GABHS.
Q: Can Amoxicillin and Augmentin be given only once a day for prophylaxis?
A: Apparently not. Amoxicillin and Augmentin both have extremely short half-lives (1-1.5 hours). This means that most of Amoxicillin/Augmentin is removed from the body in ~10hours. If a dose is skipped, the child is actually unprotected for 1-2 days. Azithromycin has a longer half-life (~1.5 days), can be taken once per day and is easier on the GI tract, but there are reports of macrolide resistant strains of GABHS.
Q: Do antibiotics kill Group A Beta-Hemolytic Streptococcus?
A: Not exactly. Antibiotics such as Amoxicillin, Azithromycin and Augmentin slow down the progression of the bacteria and prevent it from rapidly growing. This gives the child's immune system a chance to respond to the infection and kill the bacteria. Antibiotics alone aren't sufficient to eradicate strep, the body's immune system must complete the job.
Q: Which is better amoxicillin, augmentin or azithromycin?
A: This is a matter of considerable debate. Both Augmentin and Azithromycin are more clinically effective in clearing GABHS than Amoxicillin. Some strains of strep can go intracellular (where azithromycin is more effective) and some strains are macrolide tolerant (where augmentin is more effective). Often a parent will try 2 different antibiotics over a period of 2 months to find one that seems to work.
Q: My child doesn't seem any better after 10 days of amoxicillin. Does this mean he doesn't have PANDAS?
A: No. Many children actually need a stronger antibiotic than the standard treatment of amoxicillin. The standard dosage of antibiotics is based on clearing 80% of children who have a healthy immune system. For others who fall outside the standard dosing parameters, typically either augmentin or azithromycin are used. Anecdotally, parents on the forum have found that a month is needed to really evaluate whether a particular antibiotic is working. In addition, some strains of GABHS are more sensitive to one antibiotic versus another. Azithromycin is helpful if the strain is one that goes intracellular, Augmentin is helpful inhibiting extracellular strains.
Q: "Saving Sammy" said they used high dose Augmentin/XR. Why is that thought to work?
A: This isn't exactly known. At very high dosage, Augmentin is bacteriacidal (meaning it actually does kill strep). One theory is that there is a strep infection hidden (perhaps inside cells) and once the cell dies it releases strep into the blood stream. In this case, Augmentin could stop the GABHS before an immune response. There is some good anecdotal evidence for this, but this has not been clinically studied. Some researchers have indicated to parents that Augmentin may be anti-inflammatory at high dose, but there is no clinical studies to support this hypothesis.
Q: Why use prophylactic abs in PANDAS children...why not just wait until my child gets a strep infection and treat it then?
A: There is mounting evidence that each exacerbation has increased symptoms and thus prophylaxis prevents significant psychological and neurological symptoms. Gratefully, there does not appear to be any long-term damage from PANDAS; however, this is still a matter of research.
Q:Should I check for clearing of my non-PANDAS children if treated for strep
A: Yes. About 3 weeks after completing treatment for strep you can check for clearance by getting a negative culture. The dosing levels on antibiotics are designed so that about 80% of children with normal immune systems are cleared with a "standard" dosing of antibiotics. Some strains of strep are harder to eradicate and either longer treatments or use of antibiotics like azithromycin and augmentin seem to be effective on these strains.
Q:Why are doctors so hesitant to prescribe antibiotics or check for GABHS in asymptomatic children
A: The concern is primarily around creating a treatment resisitant form of GABHS. By overprescribing antibiotics, doctors worry that some of the bacteria that is resistant to that form of antibiotic will survive and replicate. Antibiotics slow down the growth of the target (e.g., GABHS) and also helpful bacteria. This means that an antibiotic resistant strain could grow uncontrolled while the normal competing non-dangerous bacteria is held back. It's all a matter of balance and antibiotics do upset that balance. In terms of checking for GABHS in asymptomatic children, this is a matter of considerable debate. The exact reason why some children don't exhibit classic "sore throat" signs or why their colonization doesn't seem to turn into full infections is just not known. There is mounting evidence that asymptomatic carriage is not as benign as once thought, but most doctors have not read these research reports.
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Treatment: IVIG, Plasmapherisis, and Plasma Exchange
Q: What is IVIG and PEX?
IVIG stands for Intravenous Immunoglobulin. Immunoglobulin antibodies, type G, are extracted from donated blood. These antibodies are transferred to the recipient through an intravenous line. IVIG is used in many auto-immune diseases but the exact nature of how it works is not known. IVIG is highly anti-inflammatory and may help T-regulatory cells become re-activated to help remove anti-host antibodies. In addition, some of the infused antibodies may help recognize infected cells or bacteria that was missed by the recipient's own antibodies.
PEX technically stands for Plasma Exchange. It is sometimes used interchangeably (especially on this forum) with plasmapheresis. Plasmapheresis is a process of removing antibodies from the blood stream through filtration. In Plasma Exchange (PEX), another donor's plasma is added on the return so that new antibodies are added (similar to IVIG). Plasmapheresis is used in severe auto-immune diseases because it can address acute antibody levels.
Q: Why does IVIG or Plasmapheresis work?
A: PANDAS is thought to be caused by three events:
the creation of an antibody to Group A Beta-Hemolytic Streptococcus that can react with neuronal tissue
the failure of the immune system to suppress the antibody
a breach of the blood-brain barrier so that a B-cell or the antibody can reach the neuronal tissue
IVIG is highly anti-inflammatory and can close #3. There are also reports that IVIG resets the T-regulatory cells addressing #2. Plasmapherisis works by removing the antibodies in #1. Antibiotics also help with #1 by slowing an infection so the immune system can kill the bacteria. Once the antigen (the bacteria) is removed, the antibodies generally disappear in ~4-6 weeks.
Q: Do I need IVIG or PEX to cure PANDAS?
A: Most of the studies and certainly parents on this forum report that IVIG and PEX are helpful in putting PANDAS in remission, but don't "cure" PANDAS. There are many reports of PANDAS symptoms returning after re-exposure to GABHS. This is why many parents use long term prophylactic antibiotics. It is also important to mention that some parents report that antibiotics used aggressively at initial onset of symptoms seem to put PANDAS in remission.
Q: Is this a chronic condition or will IVIG and PEX fix what’s wrong?
A: We don't know. There is good anecdotal evidence that IVIG and PEX have both been effective at removing 50+% of symptoms and that these treatments with prophylactic followup antibiotics have kept patients in remission for > 1 year. It does appear, however, that the prophylactic antibiotics is critical as many have had a recurrence when their child has been re-exposed to GABHS.
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Treatment : Other
Q:I've read a lot about Ibuprofen, what can it do for my child?
A: Many parents report anecdotally that Ibuprofen (e.g., Advil, Motrin) seems to lessen symptoms. The exact reason is not known. Several recent papers indicate that this could be caused by reduced inflammation of the blood-brain barrier and thereby preventing the anti-neuronal antibodies from reaching neuronal tissue. For those interested in how T-cells cross the blood brain barrier and the effect of ibuprofen on ICAM-1 adhesion modules see http://www.latitudes...art=#entry46222
Q:Where can I find a list of doctors in my area?
A: You can ask on this forum. We've collected some of the names of doctors others have seen here: http://www.latitudes...?showtopic=5023
Q:Why shouldn't PANDAS be treated "like any other case of OCD or tics" like the NIMH website recommends?
A
ANDAS is thought to have a different cause than non-PANDAS OCD and tics. Research studies thus far indicate that children with PANDAS had higher behavioral activation rates on SSRIs see http://mbldownloads....06PP_Murphy.pdf. Anti-psychotics have many serious side effects and there are not controlled studies on the use of these medications on children in the PANDAS subgroup. There has been studies of Cognitive Behavioral Therapy that has shown some efficacy with older PANDAS children; however, the main benefit raised in the report was that parents learned techniques for managing exacerbations. There are not controlled clinical studies on Exposure Response Prevention, but some parents on this forum have tried this technique. Anecdotal reports are mixed on the effectiveness for PANDAS children.Q: What else should I do to keep my PANDAS child strep-free?
A: It is very important to test everyone in the household for GABHS. Many families have found that there is a someone else in the family (children and parents) with strep during an exacerbation. The positive individual often is asymptomatic and parents and doctors are often surprised when they come back positive. This individual needs to be treated to prevent reinfection of others. Antibiotics don't prevent colonization or infection, antibiotics slow down the infection but the immune system still responds. Be sure to check 2 weeks later to ensure the positive individual cleared.
supersix
Active member
Research questions
Q: What is intracellular strep?
A: Several strains of GABHS are able to penetrate into cells and act like viruses. This has the property of enabling the GABHS to evade the typical discovery mechanism of the immune system by hiding in cells. When the cell eventually dies, the GABHS is released into the blood stream and can grow/reinfect other cells.
Q: Why is PANDAS controversial?
A: PANDAS is a new disease (< 12 years old) and there's a lot not known about the disease. The primary controversy is really from researchers who think GABHS is too common an infection to treat as causal for PANDAS. They think it is likely coincidence. In reading studies, most of the criticism come from researchers studying children with Tourette's Syndrome. Unfortunately, by the time a child has had Tourette's Syndrome, they typically have had motor and vocal tics for more than 1 year with no remission for > 3 months. This means that most researchers pulling subjects who have Tourette's are not studying the rapid onset of symptoms (i.e., what most parents coming here are struggling with). Most of the controversy surrounding PANDAS comes from a particular group of researchers who have not been able to replicate other researcher experiments. We hope they all get together soon and compare notes and methods.
A second source of controversy comes from researchers who think that antibiotics, IVIG and PEX all have powerful placebo effect and studies in Russia and in US on efficacy should not be trusted. It's hard to know how to respond to these researchers except to think they've never had a PANDAS child in their test group. This board has lots of samples of children who are dramatically improved after antibiotics and in severe cases with IVIG and PEX.
Q:I'm concerned about vaccinations and whether they cause of PANDAS
A: The research at this point indicates that the disease is an incorrect response by the immune system to Group A Beta-Hemolytic Streptococcus and not a result of vaccines.
Q:Will a vaccine trigger an exacerbation?
A. Possibly. There are several parent reports of onset or worsening of symptoms within a short period of time after recieving vaccinations. This is a very controversial area and talking with an immunologist with experience with Multiple Schlerosis, Acute Rheurmatic Fever or Sydenham Chorea is probably the best recommendation here.
Q: Does PANDAS cause permanent brain injury?
A: At present, it looks like exacerbations in PANDAS do not cause permanent harm to the brain. MRIs reveal no demyelization and while there are reports of enlargement of the basal ganglia (a part of the brain controlling fear, hunger, and motor skills), this seems to remit after treatment. We all certainly hope this is the case.
Q: What is intracellular strep?
A: Several strains of GABHS are able to penetrate into cells and act like viruses. This has the property of enabling the GABHS to evade the typical discovery mechanism of the immune system by hiding in cells. When the cell eventually dies, the GABHS is released into the blood stream and can grow/reinfect other cells.
Q: Why is PANDAS controversial?
A: PANDAS is a new disease (< 12 years old) and there's a lot not known about the disease. The primary controversy is really from researchers who think GABHS is too common an infection to treat as causal for PANDAS. They think it is likely coincidence. In reading studies, most of the criticism come from researchers studying children with Tourette's Syndrome. Unfortunately, by the time a child has had Tourette's Syndrome, they typically have had motor and vocal tics for more than 1 year with no remission for > 3 months. This means that most researchers pulling subjects who have Tourette's are not studying the rapid onset of symptoms (i.e., what most parents coming here are struggling with). Most of the controversy surrounding PANDAS comes from a particular group of researchers who have not been able to replicate other researcher experiments. We hope they all get together soon and compare notes and methods.
A second source of controversy comes from researchers who think that antibiotics, IVIG and PEX all have powerful placebo effect and studies in Russia and in US on efficacy should not be trusted. It's hard to know how to respond to these researchers except to think they've never had a PANDAS child in their test group. This board has lots of samples of children who are dramatically improved after antibiotics and in severe cases with IVIG and PEX.
Q:I'm concerned about vaccinations and whether they cause of PANDAS
A: The research at this point indicates that the disease is an incorrect response by the immune system to Group A Beta-Hemolytic Streptococcus and not a result of vaccines.
Q:Will a vaccine trigger an exacerbation?
A. Possibly. There are several parent reports of onset or worsening of symptoms within a short period of time after recieving vaccinations. This is a very controversial area and talking with an immunologist with experience with Multiple Schlerosis, Acute Rheurmatic Fever or Sydenham Chorea is probably the best recommendation here.
Q: Does PANDAS cause permanent brain injury?
A: At present, it looks like exacerbations in PANDAS do not cause permanent harm to the brain. MRIs reveal no demyelization and while there are reports of enlargement of the basal ganglia (a part of the brain controlling fear, hunger, and motor skills), this seems to remit after treatment. We all certainly hope this is the case.
supersix
Active member
Buster,
This is great - I think it will save new parents an awful lot of time. Here are my comments"
Q: Is PANDAS just mis-diagnosed Sydenham Chorea?
I thought there were studies that determined Pandas is a separate condition than SC and if you had SC, you didn't have Pandas?
Q: Why does IVIG or PEX work?
Plasma-pherisis works by removing the antibodies in #1.
I think it's plasmapheresis, no hypen and only one i at the end - that's what pops up when I google... Also think we should avoid the abbreviation of Pex in a Q&A. What's being used for the moment is plasmapherisis, not Pex. They're actually two different treatments (Pex being pheresis plus IVIG). So while I always use the abbreviation, what I'm really talking about in my own experience is pheresis.
Q: What is the purpose of a prednisone burst and why does it work?
A: The prednisone burst is used to temporarily shutdown ...maybe slow down? The thought of shutting down an immune system is going to scare people. Think it should also be clear we're talking about a short period of time, not as a long term treatment.
Q: We had a negative throat culture, does that rule out PANDAS?
A: No. Group A Beta-Hemolytic Strep can colonize on the skin or the sinuses (plus ear infections, meningitis, pneumonia, GI infections, perianal/******l?)
Q: How long after starting antibiotics should I expect a response?
A: In severe exacerbations, some parents have reported a response within 24 hours. However, more parents have reported symptom relief at 10-12 days post initiation of antibiotics. (is this creating a false expectation that relief = completely gone? maybe "significant improvement"? Maybe mention that episodes can last for many weeks even on abx depending on length of untreated illness - it can takes months for things to clear for kids who've been sick for a long time)
Q: How long after starting a prednisone burst should I expect a response?
(would add a caution about TS kids and how they may have a bad reaction to prednisone - don't want it to sound like it's not without risks)
One other comment that I know others will not agree with - I respect others' opinions about vaccines. But I don't think it belongs on a Q&A about Pandas. I think it's muddying the waters. I personally think a vaccine discussion belongs in a separate place, not a Q&A. Just m.o.
Based on the group result on the NIMH suggestions, I think this will end up being a great resource for parents and caregivers.
Buster--
GREAT idea -- I have two considerations--for this post:
Q: My child doesn't seem any better after 10 days of amoxicillin. Does this mean he doesn't have pandas?
A: No. Many children actually need a stronger antibiotic than the standard treatment of amoxicillin. Typically either augmentin or azithromycin are used.
Yes, "stronger" is an emphasis, but it should be noted that as your own dear EAMom advised me-- also LONGER treatment. It may take a month.
A month of Amoxicillan, or more helped us.
One of the original Ps research told us Amoxicillan had anti-inflammatory effects
Q: Saving Sammy said they used high dose Augmentin/XR. Why is that thought to work?
A: This isn't exactly known. At very high dosage, Augmentin is bacteriacidal (meaning it actually does kill strep). One theory is that there is a strep infection hidden (perhaps inside cells) and if a cell bursts and releases strep, the augmentin can actually stop the GABHS. There is some good anecdotal evidence for this, but this has not been clinically studied.
Yes, but what we still don't know, as so many have noted, is if the effects of the antibiotics are actually some type of anti-inflammatory effect essentially--
All the best, thanks for doing this--
link to this thread is here A PANDAS FAQ - PANS / PANDAS (Lyme included) - ACN Latitudes Forums
This is great - I think it will save new parents an awful lot of time. Here are my comments"
Q: Is PANDAS just mis-diagnosed Sydenham Chorea?
I thought there were studies that determined Pandas is a separate condition than SC and if you had SC, you didn't have Pandas?
Q: Why does IVIG or PEX work?
Plasma-pherisis works by removing the antibodies in #1.
I think it's plasmapheresis, no hypen and only one i at the end - that's what pops up when I google... Also think we should avoid the abbreviation of Pex in a Q&A. What's being used for the moment is plasmapherisis, not Pex. They're actually two different treatments (Pex being pheresis plus IVIG). So while I always use the abbreviation, what I'm really talking about in my own experience is pheresis.
Q: What is the purpose of a prednisone burst and why does it work?
A: The prednisone burst is used to temporarily shutdown ...maybe slow down? The thought of shutting down an immune system is going to scare people. Think it should also be clear we're talking about a short period of time, not as a long term treatment.
Q: We had a negative throat culture, does that rule out PANDAS?
A: No. Group A Beta-Hemolytic Strep can colonize on the skin or the sinuses (plus ear infections, meningitis, pneumonia, GI infections, perianal/******l?)
Q: How long after starting antibiotics should I expect a response?
A: In severe exacerbations, some parents have reported a response within 24 hours. However, more parents have reported symptom relief at 10-12 days post initiation of antibiotics. (is this creating a false expectation that relief = completely gone? maybe "significant improvement"? Maybe mention that episodes can last for many weeks even on abx depending on length of untreated illness - it can takes months for things to clear for kids who've been sick for a long time)
Q: How long after starting a prednisone burst should I expect a response?
(would add a caution about TS kids and how they may have a bad reaction to prednisone - don't want it to sound like it's not without risks)
One other comment that I know others will not agree with - I respect others' opinions about vaccines. But I don't think it belongs on a Q&A about Pandas. I think it's muddying the waters. I personally think a vaccine discussion belongs in a separate place, not a Q&A. Just m.o.
Based on the group result on the NIMH suggestions, I think this will end up being a great resource for parents and caregivers.
Buster--
GREAT idea -- I have two considerations--for this post:
Q: My child doesn't seem any better after 10 days of amoxicillin. Does this mean he doesn't have pandas?
A: No. Many children actually need a stronger antibiotic than the standard treatment of amoxicillin. Typically either augmentin or azithromycin are used.
Yes, "stronger" is an emphasis, but it should be noted that as your own dear EAMom advised me-- also LONGER treatment. It may take a month.
A month of Amoxicillan, or more helped us.
One of the original Ps research told us Amoxicillan had anti-inflammatory effects
Q: Saving Sammy said they used high dose Augmentin/XR. Why is that thought to work?
A: This isn't exactly known. At very high dosage, Augmentin is bacteriacidal (meaning it actually does kill strep). One theory is that there is a strep infection hidden (perhaps inside cells) and if a cell bursts and releases strep, the augmentin can actually stop the GABHS. There is some good anecdotal evidence for this, but this has not been clinically studied.
Yes, but what we still don't know, as so many have noted, is if the effects of the antibiotics are actually some type of anti-inflammatory effect essentially--
All the best, thanks for doing this--
link to this thread is here A PANDAS FAQ - PANS / PANDAS (Lyme included) - ACN Latitudes Forums
supersix
Active member
Back to Main Case Histories Page
Case #1 – Boy, Age 7
Menlo Park, California
Onset: May 2007
Treatment: Abx & IVIG 9/08 resolving
Summary of the Case
Graph of the Symptoms
Detailed Case History
THE SUDDEN ONSET STORY
Prior to onset of PANDAS, our son was an even-tempered, compassionate and patient child. He was focused and able to complete tasks in a confident, calm and coherent fashion. He had a strep infection in April 2007 was treated with antibiotics (Azithromycin due to sudden allergic reaction to penicillin and Augmentin) and seemed to resolve. Approx. 3 weeks after the infection, in early May he began to seem mildly-hyper, mildly defiant, and mildly fearful. I was irritated with him but imagined he was becoming a "big boy" and was over exuberant about summer-time in a new neighborhood (we had recently moved).
August 24, 2007 – I escorted him to his first day of Second Grade and a severely autistic girl, much larger than he, ran towards us screaming and kicking. We were surprised and frightened. Her parents held her while she screamed for more than 20 minutes. His classroom, the other parents and I were surprised – to say the least. I believe this event created a dramatic adrenalin rush that "popped" the PANDAS episode into IMMEDIATE full swing.
At this point, Son's mouth fell open and he stared straight ahead. I hugged him thinking he was frightened. He spoke but in a daze, "I'm ok mom, I feel a little weird, but I'm okay." That day he came home from school, and fell to the street in front of my house, grabbing his head. "I can't decide what to do. I don't know if I should walk forwards or go backwards or go see a friend or stay home," he cried and yelled at me in a confused state while on the sidewalk for about 30 minutes. He finally calmed and we slowly walked home.
Our son came into the home and we turned on the t.v. to relax. Immediately he became terrified of the t.v. "It will kill me! It has radiation!" He turned off all the electronic devices in our home. This type of contamination terror gradually escalated and involved: sky, animals, birds, walking, the ground, bats – etc. He had terrible separation anxiety when I left him or when he went to bed. He would kiss me 20x, "I love you, don't forget." Variations of this continued for four months (see detailed summary for further explanation).
ESCALATING PHYISCAL SYMPTOMS & MEDICAL PROFESSIONALS REACTION
The mental torture then escalated to physical, joint, sensory pain that finally brokered him a deal with the MRI at Stanford U four months later. It showed acute sinusitis and enflamed Virchow-Robin Spaces around the basal ganglia. Prior to that – the psychologist, pediatrician –thought he had become spontaneously tempermental. I had no medical training – so I assumed they were correct. Because the NIMH website is unclear about various diagnostic tests for PANDAS, at this point STILL no further testing of any kind was done by Stanford during this acute time.
I had him mirrored at school by the psychologist and she found he was quiet and compliant and ate lunch by himself. He later told me he kept away from friends so he wouldn't "go wacky."
He suffered no intellectual loss but would get frustrated and cry and become angry when doing homework. Unfortunately, he had the strength of character to "keep it together" at school and would come home and come apart – rolling on the ground, trying to climb the walls, screaming, crying – four hours at a time. Because of his ability to keep it together – the doctors and school assumed our family was negligent in some way.
ARRESTING THE INFECTION ABX and IVIG
Four months after the acute onset, ASO Titers were done showing a "normal" level of 500. The D-nase was mistakenly NOT done or lost by lab. (One year later d-nase was done and was elevated 350; Aso-Titer after one year diminished to 300's.)
An earache caused us to give him Azithromycin in December. In 10 days all his psychological symptoms were down by 80%. We continued on with prophylactic abx. Despite this the improvement w/abx - mood lability and fears of death or contamination continued when he was around strep – microbially (see graph).
One year from the ONSET: IVIG was administered (9/08) by Dr. Kovacevic. Son felt, and the nurses, Dr. K and I saw a complete resolution of all anxiety symptoms within 3 hours of the treatment. Antibiotics will continue daily. Within 3 weeks he had a "turning of the pages" event, as Dr. K calls them, and he raged and yelled and was confused for about 1 hour. He understood the episode, he understood it was PANDAS and not him. This rise and fall in mood, fear anger continued for 10 weeks.
Sudden anger and volatility has become an increased issue. We believe this is largely due to brain inflammation/encephalitis-like in nature. We learn from Neurologists that anger is a common component in children repairing from encephalitis and that in time it will probably diminish.
At week 12 post-IVIG he was still battling mild fears – now it is fear of death or abduction by aliens – and having mood lability issues. He has some cognitive issues also during this time and begins to cry or slam his fists when doing homework. On a scale of 1-100 he is at 90%. Added IVIG benefit – all chronic croupy-like cough and all allgeries - GONE.
6 Months Post-IVIG: Our "normal" child is back. It is good to get to know him again. When he is tired ONLY – he does still have a quick temper and will explode.
7 Months Post-IVIG: Exposed during playdate to strep. Has re-exacerbation. Terror of school; crying and locking himself in room each morning. Stop onset with 30mg 5 days of prednisone.
8 Months Post-IVIG: Anxiety continues and microbial exposure to strep seems to agitate. Will do 800mg/1kg dose of IVIG (about ½ the dose used in the first round). Think this will give him the boost he needs to stop this mild reactivity and baseline attitude change which is irritable and rude at times; rages every other day that last 5 minutes to 1 hour. He is still MUCH improved compared to Acute Onset of PANDAS—just not predictable in nature anymore.
FAMILY HISTORY
Mother and great- grandmother – relapsing/remitting multiple sclerosis.
Mother's brother and Grandfather – Asberger-like brilliance and poor social skills.
Father's mother and sister – rheumatic fever and scarlet fever.
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Case 1 Graph
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DETAILED HISTORY
The graph attached shows 1) antibiotic doses and increase/decrease in symptom severity, and 2) microbial strep exposure is with increase in Y-BOCS (Yale-Brown Obsessive Compulsive) scores as well.
Pre-acute onset
January to April repeat Otitis Media issues. Repeat antibiotics required. Documented strep infection in April 07 w/ subclinical OCD comments made at that time.
Acute Onset Phase – August to December (w/out abs)
August 25, 2007 Onset of acute physical/psychological symptoms w/severity climbing thru December. No presence of sore throat, etc. no swab taken or blood tests done
Management Phase – January to September (w/abs)
Ear infection in late December precipitated use of Azithromycin. Immediate cessation of symptoms were noticed with in 5 days with dramatic results within 10 days.
The graph shows our adherence to the "NIH" guidelines for 2-week antibiotic use only. However, a clear nexus between increased physical and psychological symptoms and the withdrawal of Azithro caused us to continue to administer the antibiotics.
Final Phase – IVIG – abs 250mg Keflex or Azithromycin daily for one year
Finally, IVIG was administered on 9/25/08 because it became apparent to my son – who by this time could recognize the onslaught of PANDAS – and my husband and I that this relentless cycle of terror and demoralization had to stop.
Post IVIG – 8 months – May 2009
A number of other children who did IVIG (1.5 grams/1 kg) when we did had 100% improvement. We have remained at 90% improvement with intermittent reactions to strep at school. Doing an additional smaller dose of IVIG as we approach Summer months – hoping this will give his system a break from strep and time to absorb (800 mg/1 kg) the new antibodies. Think this may stop his continued reaction to strep. All symptoms gone June 2009.
DETAILED HISTORY
Our Son 2007/08 10/17/08
4/13/07 – Strep treated with Azithromycin due to allergic reaction to 1/07 and 2/07 otitis media
8/23/07 - Infection w/allergic reaction to Augmentin and penicillin.
Intermittent hyperactivity – running, talking, jumping.
Mild defiance.
Intermittent Fear of bridges (we had crossed 100’s of bridges all his life).
ACUTE PHASE – August to December 2007 w/out abs
8/24/07
ACUTE ONSET Sudden falling to the street after school holding his head and crying and panic.
Physical Symptoms
Unable to move for one hour– confusion
Hyperventilation.
Eye dilation
Crawling on the floor – panic (daily)
Disorientation (daily)
Decision making impaired – can’t remember how to dress, general confusion.
Psychological Symptoms
ear of electronics – t.v., computer – radiation poison or sucking brain out. (daily)
Fear of making decisions (daily)
Defiance – tantrums (daily)
Hyperactivity – non-stop talking, movement. (daily)
Separation anxiety at bedtime and in daily life. (daily)
MID-SEPTEMBER:
Ritual kissing (20x) at night and going to school. (daily)
10/1-30/07 Physical Symptoms
Crawling and rolling.
Mild aggression – defiance, growling, charging
Eye dilation.
Can no longer swim. Cannot coordinate arms and legs and face.
Psychological Symptoms
Obsessive handwashing – 30-50x at home, 10x at school (no mention of contamination)
Separation Anxiety – bed and school times
Racing thoughts – calmed by handwashing.
Above fears continue.
Night Terrors begin.
11/14/07 Physical Symptoms
Eye dilation
Joint pain in legs and hips.
Sensory decline – taste and vision.
Adventitious movement – hand slamming, jumps, kicks
11/14/07 Psychological Symptoms
INCREASED aggression.
INCREASED hyperactivity
Face alteration – as if crazed older man – not child-;like.
Kick car seat, body slamming – as soon as out of school. (daily)
Swearing and yelling
Fear of contamination – fungus, cigarette butts, shoes, dirt, fertilizer
Kissing rituals continue
Separation anxiety
Night terrors
EXTREME rigidity – perfectionism
Fear of going out – isolates at school
Fear of death. Suicidal comments.
Sexual disinhibition.
12/1-20/07 Physical Symptoms (12/11 – Prozac 5mg daily)
Numbness of digits
Intermittent leg and feet pain
Hearing sensitivity
Taste – loss of taste MRI DONE – ACUTE SINUSITIS
Snakelike chorea
Extreme facial grimacing, eye dilation, tongue extending
12/21/07 EARACHE – 10 day AZITHRO
Psychological Symptoms
Decreased defiance
Decreased perfectionism
1/02/08 NO AZITHRO for next 10 days
Psychological Symptoms
No defiance.
No contamination comments.
No separation anxiety at bed or terrors.
Handwashing diminished by 50%
Physical Symptoms
NONE
1/12/08 Physical Symptoms INCREASE AZITHRO for next (5?) days
Hyperactivity increase
Frequent Urination (10 x or more daily)
Eye dilation
Facial distortion (grimacing, tongue extended)
1/12/08 Psychological Issues 250mg daily AZITHRO thru 2/26/08
Fear of illness
Separation Anxiety at Bedtime Only
Handwashing at 50%
Anxiety about various issues on news at school.
1/15/08 Physical Issues – NONE (Discontinue Prozac)
2/01-26/08 Physical Issues – NONE
Psychological Issues
Anxiety Lessening – Sucking on Shirt and fingers for comfort
Perfectionism and Controlling NO MORE HANDWASHING
2/26/08 TONSILECTOMY/ADNOIDECTOMY – 3 days Prednisone
CESSATION OF ALL PSYCHOLOGICAL/PHYSICAL ISSUES for One week.
3/08 Physical Issues AZITHRO decreased to 500mg weekly
By 3/14
Tourette’s like – clicking, whistling, finger snapping (2 hours daily)
Hyperactivity increases
Insomnia issues
Psychological Issues
Defiance seen in transitions
Increased mood lability – crying, anger, confusion
Begins shirt and finger sucking again
4/08 Psychological Issues begin to Increase Intermittent Fever
Fear of fungus and contamination
Night terrors
Separation Anxiety at bedtime Increases
Physical Symptoms
Continues as Above at 3/14
4/18/08 Psychological Issues
Fear of fungus and contamination
Night terrors
Separation Anxiety at bedtime Increases
Increased Aggression
Increased Night Terrors
Increased Hyperactivity
Physical Symptoms
Disorientation
Eye Dilation and Wild
Extremely Stuffy Nose (extreme allergies reported in town)
4/21/08 INCREASE AZITHRO to 250mg for 10 days
Physical Issues NONE
Psychological Issues
Mild fears
Mild Separation Anxiety
Hyperactivity, terrors, aggression – NONE
5/08 BEGIN AZITHRO to 125mg daily for 4 months
Psychological Issues
Mild Anxiety
Perfectionism
Grouchy "Edgy" but tolerable
5/15/08 STREP INFECTION AT PRESCHOOL 5/10-25/08
Psychological Issues – INCREASE IN ALL – but milder than Acute Onset
Anxiety
Perfectionism
Grouchy "Edgy" angrier
Sexual disinhibition
Finger sucking
Increased Hyperactivity
Ritualistic in readying for school
6/05/08 INCREASE AZITHRO to 250mg Daily
RESOLUTION IN ALL AREAS by JUNE 10th
6/10/08 DECREASE AZITHRO to 125mg Daily
To 6/17 Holding Steady
Mild Perfectionism remains.
6/24/08 and July 1/08 STREP INFECTIONS IN PRESCHOOL – NO INCREASE from 125mg.
I SUSPECT HE WILL GET WORSE BUT DO NOT INCREASE
7/4/08
Physical Symptoms
Eye dilation
Adventitious Movement – kicking, slamming hand on table, awkward body
Hyperactivity
Psychological Symptoms
Fear of contamination
Separation Anxiety at Bedtime
Increased anxieties over all
Increased Perfectionism
Our Son recognizes that THIS is PANDAS. Time to think about IVIG.
Case #1 – Boy, Age 7
Menlo Park, California
Onset: May 2007
Treatment: Abx & IVIG 9/08 resolving
Summary of the Case
Graph of the Symptoms
Detailed Case History
THE SUDDEN ONSET STORY
Prior to onset of PANDAS, our son was an even-tempered, compassionate and patient child. He was focused and able to complete tasks in a confident, calm and coherent fashion. He had a strep infection in April 2007 was treated with antibiotics (Azithromycin due to sudden allergic reaction to penicillin and Augmentin) and seemed to resolve. Approx. 3 weeks after the infection, in early May he began to seem mildly-hyper, mildly defiant, and mildly fearful. I was irritated with him but imagined he was becoming a "big boy" and was over exuberant about summer-time in a new neighborhood (we had recently moved).
August 24, 2007 – I escorted him to his first day of Second Grade and a severely autistic girl, much larger than he, ran towards us screaming and kicking. We were surprised and frightened. Her parents held her while she screamed for more than 20 minutes. His classroom, the other parents and I were surprised – to say the least. I believe this event created a dramatic adrenalin rush that "popped" the PANDAS episode into IMMEDIATE full swing.
At this point, Son's mouth fell open and he stared straight ahead. I hugged him thinking he was frightened. He spoke but in a daze, "I'm ok mom, I feel a little weird, but I'm okay." That day he came home from school, and fell to the street in front of my house, grabbing his head. "I can't decide what to do. I don't know if I should walk forwards or go backwards or go see a friend or stay home," he cried and yelled at me in a confused state while on the sidewalk for about 30 minutes. He finally calmed and we slowly walked home.
Our son came into the home and we turned on the t.v. to relax. Immediately he became terrified of the t.v. "It will kill me! It has radiation!" He turned off all the electronic devices in our home. This type of contamination terror gradually escalated and involved: sky, animals, birds, walking, the ground, bats – etc. He had terrible separation anxiety when I left him or when he went to bed. He would kiss me 20x, "I love you, don't forget." Variations of this continued for four months (see detailed summary for further explanation).
ESCALATING PHYISCAL SYMPTOMS & MEDICAL PROFESSIONALS REACTION
The mental torture then escalated to physical, joint, sensory pain that finally brokered him a deal with the MRI at Stanford U four months later. It showed acute sinusitis and enflamed Virchow-Robin Spaces around the basal ganglia. Prior to that – the psychologist, pediatrician –thought he had become spontaneously tempermental. I had no medical training – so I assumed they were correct. Because the NIMH website is unclear about various diagnostic tests for PANDAS, at this point STILL no further testing of any kind was done by Stanford during this acute time.
I had him mirrored at school by the psychologist and she found he was quiet and compliant and ate lunch by himself. He later told me he kept away from friends so he wouldn't "go wacky."
He suffered no intellectual loss but would get frustrated and cry and become angry when doing homework. Unfortunately, he had the strength of character to "keep it together" at school and would come home and come apart – rolling on the ground, trying to climb the walls, screaming, crying – four hours at a time. Because of his ability to keep it together – the doctors and school assumed our family was negligent in some way.
ARRESTING THE INFECTION ABX and IVIG
Four months after the acute onset, ASO Titers were done showing a "normal" level of 500. The D-nase was mistakenly NOT done or lost by lab. (One year later d-nase was done and was elevated 350; Aso-Titer after one year diminished to 300's.)
An earache caused us to give him Azithromycin in December. In 10 days all his psychological symptoms were down by 80%. We continued on with prophylactic abx. Despite this the improvement w/abx - mood lability and fears of death or contamination continued when he was around strep – microbially (see graph).
One year from the ONSET: IVIG was administered (9/08) by Dr. Kovacevic. Son felt, and the nurses, Dr. K and I saw a complete resolution of all anxiety symptoms within 3 hours of the treatment. Antibiotics will continue daily. Within 3 weeks he had a "turning of the pages" event, as Dr. K calls them, and he raged and yelled and was confused for about 1 hour. He understood the episode, he understood it was PANDAS and not him. This rise and fall in mood, fear anger continued for 10 weeks.
Sudden anger and volatility has become an increased issue. We believe this is largely due to brain inflammation/encephalitis-like in nature. We learn from Neurologists that anger is a common component in children repairing from encephalitis and that in time it will probably diminish.
At week 12 post-IVIG he was still battling mild fears – now it is fear of death or abduction by aliens – and having mood lability issues. He has some cognitive issues also during this time and begins to cry or slam his fists when doing homework. On a scale of 1-100 he is at 90%. Added IVIG benefit – all chronic croupy-like cough and all allgeries - GONE.
6 Months Post-IVIG: Our "normal" child is back. It is good to get to know him again. When he is tired ONLY – he does still have a quick temper and will explode.
7 Months Post-IVIG: Exposed during playdate to strep. Has re-exacerbation. Terror of school; crying and locking himself in room each morning. Stop onset with 30mg 5 days of prednisone.
8 Months Post-IVIG: Anxiety continues and microbial exposure to strep seems to agitate. Will do 800mg/1kg dose of IVIG (about ½ the dose used in the first round). Think this will give him the boost he needs to stop this mild reactivity and baseline attitude change which is irritable and rude at times; rages every other day that last 5 minutes to 1 hour. He is still MUCH improved compared to Acute Onset of PANDAS—just not predictable in nature anymore.
FAMILY HISTORY
Mother and great- grandmother – relapsing/remitting multiple sclerosis.
Mother's brother and Grandfather – Asberger-like brilliance and poor social skills.
Father's mother and sister – rheumatic fever and scarlet fever.
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Case 1 Graph
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DETAILED HISTORY
The graph attached shows 1) antibiotic doses and increase/decrease in symptom severity, and 2) microbial strep exposure is with increase in Y-BOCS (Yale-Brown Obsessive Compulsive) scores as well.
Pre-acute onset
January to April repeat Otitis Media issues. Repeat antibiotics required. Documented strep infection in April 07 w/ subclinical OCD comments made at that time.
Acute Onset Phase – August to December (w/out abs)
August 25, 2007 Onset of acute physical/psychological symptoms w/severity climbing thru December. No presence of sore throat, etc. no swab taken or blood tests done
Management Phase – January to September (w/abs)
Ear infection in late December precipitated use of Azithromycin. Immediate cessation of symptoms were noticed with in 5 days with dramatic results within 10 days.
The graph shows our adherence to the "NIH" guidelines for 2-week antibiotic use only. However, a clear nexus between increased physical and psychological symptoms and the withdrawal of Azithro caused us to continue to administer the antibiotics.
Final Phase – IVIG – abs 250mg Keflex or Azithromycin daily for one year
Finally, IVIG was administered on 9/25/08 because it became apparent to my son – who by this time could recognize the onslaught of PANDAS – and my husband and I that this relentless cycle of terror and demoralization had to stop.
Post IVIG – 8 months – May 2009
A number of other children who did IVIG (1.5 grams/1 kg) when we did had 100% improvement. We have remained at 90% improvement with intermittent reactions to strep at school. Doing an additional smaller dose of IVIG as we approach Summer months – hoping this will give his system a break from strep and time to absorb (800 mg/1 kg) the new antibodies. Think this may stop his continued reaction to strep. All symptoms gone June 2009.
DETAILED HISTORY
Our Son 2007/08 10/17/08
4/13/07 – Strep treated with Azithromycin due to allergic reaction to 1/07 and 2/07 otitis media
8/23/07 - Infection w/allergic reaction to Augmentin and penicillin.
Intermittent hyperactivity – running, talking, jumping.
Mild defiance.
Intermittent Fear of bridges (we had crossed 100’s of bridges all his life).
ACUTE PHASE – August to December 2007 w/out abs
8/24/07
ACUTE ONSET Sudden falling to the street after school holding his head and crying and panic.
Physical Symptoms
Unable to move for one hour– confusion
Hyperventilation.
Eye dilation
Crawling on the floor – panic (daily)
Disorientation (daily)
Decision making impaired – can’t remember how to dress, general confusion.
Psychological Symptoms
ear of electronics – t.v., computer – radiation poison or sucking brain out. (daily)
Fear of making decisions (daily)
Defiance – tantrums (daily)
Hyperactivity – non-stop talking, movement. (daily)
Separation anxiety at bedtime and in daily life. (daily)
MID-SEPTEMBER:
Ritual kissing (20x) at night and going to school. (daily)
10/1-30/07 Physical Symptoms
Crawling and rolling.
Mild aggression – defiance, growling, charging
Eye dilation.
Can no longer swim. Cannot coordinate arms and legs and face.
Psychological Symptoms
Obsessive handwashing – 30-50x at home, 10x at school (no mention of contamination)
Separation Anxiety – bed and school times
Racing thoughts – calmed by handwashing.
Above fears continue.
Night Terrors begin.
11/14/07 Physical Symptoms
Eye dilation
Joint pain in legs and hips.
Sensory decline – taste and vision.
Adventitious movement – hand slamming, jumps, kicks
11/14/07 Psychological Symptoms
INCREASED aggression.
INCREASED hyperactivity
Face alteration – as if crazed older man – not child-;like.
Kick car seat, body slamming – as soon as out of school. (daily)
Swearing and yelling
Fear of contamination – fungus, cigarette butts, shoes, dirt, fertilizer
Kissing rituals continue
Separation anxiety
Night terrors
EXTREME rigidity – perfectionism
Fear of going out – isolates at school
Fear of death. Suicidal comments.
Sexual disinhibition.
12/1-20/07 Physical Symptoms (12/11 – Prozac 5mg daily)
Numbness of digits
Intermittent leg and feet pain
Hearing sensitivity
Taste – loss of taste MRI DONE – ACUTE SINUSITIS
Snakelike chorea
Extreme facial grimacing, eye dilation, tongue extending
12/21/07 EARACHE – 10 day AZITHRO
Psychological Symptoms
Decreased defiance
Decreased perfectionism
1/02/08 NO AZITHRO for next 10 days
Psychological Symptoms
No defiance.
No contamination comments.
No separation anxiety at bed or terrors.
Handwashing diminished by 50%
Physical Symptoms
NONE
1/12/08 Physical Symptoms INCREASE AZITHRO for next (5?) days
Hyperactivity increase
Frequent Urination (10 x or more daily)
Eye dilation
Facial distortion (grimacing, tongue extended)
1/12/08 Psychological Issues 250mg daily AZITHRO thru 2/26/08
Fear of illness
Separation Anxiety at Bedtime Only
Handwashing at 50%
Anxiety about various issues on news at school.
1/15/08 Physical Issues – NONE (Discontinue Prozac)
2/01-26/08 Physical Issues – NONE
Psychological Issues
Anxiety Lessening – Sucking on Shirt and fingers for comfort
Perfectionism and Controlling NO MORE HANDWASHING
2/26/08 TONSILECTOMY/ADNOIDECTOMY – 3 days Prednisone
CESSATION OF ALL PSYCHOLOGICAL/PHYSICAL ISSUES for One week.
3/08 Physical Issues AZITHRO decreased to 500mg weekly
By 3/14
Tourette’s like – clicking, whistling, finger snapping (2 hours daily)
Hyperactivity increases
Insomnia issues
Psychological Issues
Defiance seen in transitions
Increased mood lability – crying, anger, confusion
Begins shirt and finger sucking again
4/08 Psychological Issues begin to Increase Intermittent Fever
Fear of fungus and contamination
Night terrors
Separation Anxiety at bedtime Increases
Physical Symptoms
Continues as Above at 3/14
4/18/08 Psychological Issues
Fear of fungus and contamination
Night terrors
Separation Anxiety at bedtime Increases
Increased Aggression
Increased Night Terrors
Increased Hyperactivity
Physical Symptoms
Disorientation
Eye Dilation and Wild
Extremely Stuffy Nose (extreme allergies reported in town)
4/21/08 INCREASE AZITHRO to 250mg for 10 days
Physical Issues NONE
Psychological Issues
Mild fears
Mild Separation Anxiety
Hyperactivity, terrors, aggression – NONE
5/08 BEGIN AZITHRO to 125mg daily for 4 months
Psychological Issues
Mild Anxiety
Perfectionism
Grouchy "Edgy" but tolerable
5/15/08 STREP INFECTION AT PRESCHOOL 5/10-25/08
Psychological Issues – INCREASE IN ALL – but milder than Acute Onset
Anxiety
Perfectionism
Grouchy "Edgy" angrier
Sexual disinhibition
Finger sucking
Increased Hyperactivity
Ritualistic in readying for school
6/05/08 INCREASE AZITHRO to 250mg Daily
RESOLUTION IN ALL AREAS by JUNE 10th
6/10/08 DECREASE AZITHRO to 125mg Daily
To 6/17 Holding Steady
Mild Perfectionism remains.
6/24/08 and July 1/08 STREP INFECTIONS IN PRESCHOOL – NO INCREASE from 125mg.
I SUSPECT HE WILL GET WORSE BUT DO NOT INCREASE
7/4/08
Physical Symptoms
Eye dilation
Adventitious Movement – kicking, slamming hand on table, awkward body
Hyperactivity
Psychological Symptoms
Fear of contamination
Separation Anxiety at Bedtime
Increased anxieties over all
Increased Perfectionism
Our Son recognizes that THIS is PANDAS. Time to think about IVIG.
supersix
Active member
CASE #2 – Girl, Age 7
Sunnyvale, California
Onset: February 2008
Treatment: Prophy. Azithro
Summary of the Case
Detailed Case History
Our daughter, DD, was a healthy child prior to January 2008, when she turned 7½ years old. On the afternoon of January 23, 2008 she became sick with a fever that lasted for three days. On the first day of the fever she also complained of a sore throat. Four other children in her classroom were out sick at the same time, at least one of which was diagnosed with strep throat. After the fever resolved we noticed puzzling behavior changes in her. These early symptoms, beginning in late January and early February, included:
food restriction: initially no breakfast, then no snacks
severely increased anxiety: social anxiety, separation anxiety, anxiety over being late to school (insisting on waking 2 hours before school so she wouldn't be late)
emotional lability/defiance: many tantrums (including a screaming tantrum ½ hour before her fever started on Jan. 23), "difficult” behavior, irritability, lots of defiance
social withdrawal: she stopped playing with neighborhood children and children at school
touching rituals: sucking in chest and feeling ribs and spine
headaches: including ocular migraines when she saw "ghosts” and iridescent bubbles
On Feb 21st, DD's symptoms worsened after a tooth extraction (for orthodontic reasons). All of her prior symptoms intensified and she exhibited:
vocal utterances: a grunting/soft verbal tic
motor abnormalities: a lack of smoothness in her fine motor skills, increased clumsiness
demanding/controlling: irrational demands about things to be done in certain way. Needed parents to stand or sit. Became very controlling.
Note: on March 1st, we had a sleepover at our house. Four days later, one of the friends (10 years old) was diagnosed with GABHS (had a high fever, sore throat and cultured positive).
DD’s symptoms worsened after a second tooth extraction on March 7th. At the time, we wondered if this was related to a reaction to nitrous oxide, however, in retrospect we believe colonized strep was released into the blood stream. Her symptoms worsened to include:
OCD behaviors: insisting that we go through doorways in a certain way, contamination fears, multiple rituals that had to be completed in particular order.
anorexia nervosa: severe fear of gaining weight, distorted view of body.
complex arm motion: an unconscious complex movement of the right arm touching ribs, chest and then bottom of chin with back of hand (video available).
measurement rituals: a complex measurement of arms, legs, stomach which had to be completed in a particular way (video available).
depression and suicidal statements: declarations of needing to be killed.
DD became obsessed with her weight. She was terrified of weighing more than 50 pounds. She exhibited compulsive questioning rituals with each meal, "Will this make my stomach grow?"... "Does this have sugar in it* (see note below)... "Are my arms bigger than Sibling's?" (Sibling is her 5-year-old sister). DD would study herself in the mirror, weighed herself many times a day, called her muscles fat, and was sucking in her chest and feeling her ribs and spine. Her drawings of people became distorted with heads oddly shaped and distorted bodies. Her weight plummeted as she would eat no more than 1 small meal per day. When asked why she was not eating, she'd answer "so when I do eat I won't get over 50 lbs." We disabled the scale and DD became obsessed about getting a new scale.
*Note: DD's obsession with sugar appears to have been triggered by a school Scholastic Healthy Eating handout which included a chart with the sugar content of various foods (soda, ice cream, etc.). She kept this handout in her back pack for many weeks. As parents, we have never expressed concern regarding the sugar content of food, aside from asking her to brush her teeth after eating candy.
By mid-March DD developed complex measurement rituals, had movement compulsions, and involuntary arm shakes with increased clumsiness and illegible handwriting. Measurement rituals included encircling her legs with her fingers to ensure her legs would "fit", measuring her wrists, and measuring the distance from her back to her stomach. This ritual was extremely pronounced during meals and she would have to stop and repeat the ritual if she "got it wrong."
On March 15th, at her pediatrician's office, she was psychotic with suicidal statements (she was inconsolable and was screaming "I need to die", "I need to be killed", "Please kill me"). She also emphatically stated many times at home that she would "rather die than eat breakfast" and that she considered herself to be a "bad person." When asked why, she said she was bad "because she was in speech therapy." DD was visibly depressed.
She was hospitalized on March 20th at LPCH comprehensive care (inpatient eating disorder clinic) for malnutrition with hypothermia and hypotension. She had dropped 15% of her body weight in 2 weeks. Her admission weight was 19.5kg; height was 122cm. The provisional psychiatric diagnosis was PANDAS induced OCD/Anorexia Nervosa. Sedimentation rate was normal. CBC was normal with exception of eosinophils (0.38). Her UA showed 3+ Ketones. Initial EKG was abnormal with elongated QTc interval. Cultures were positive for GABHS (throat and perianal). Interestingly, despite positive culture and likely infection since January, DD's ASO and anti-Dnase-B were not elevated relative to norms [ASO (39, school-age children ref. range < 166 IU/ml)) and anti-Dnase-B (149, expected value < = 400)]. She was started on boost therapy (re-feeding) for Anorexia Nervosa, Klonopin (0.75mg) for anxiety, and on the 3rd day Augmentin for strep and Lexapro (5mg) for OCD. DD was able to drink Pediasure provided it was called "medicine" and not "food."
24hrs after Augmentin was started, DD's mood improved dramatically with her drawings returning to normal proportions. It was as if a cloud has passed and she smiled for the first time in a month. With encouragement she was now able to take full meals. She still had compulsions and rituals associated with eating, but was satisfied with one round of questions rather than continuous checking.
At this same time (March 24), a rapid strep test on her asymptomatic 5-year-old sister Sibling, was positive. Sibling was started on Augmentin (10 days rx) but received 7 days as she developed a rash after 1 week on the antibiotic (see below).
DD was released March 27th with stable vital signs. Weight was monitored at LPCH outpatient ED clinic. Psychiatric monitoring and CBT was started with a private practice pediatric psychiatrist specializing in OCD and ED. Lexapro was increased to 10mg to help OCD symptoms. Klonopin was tapered off over 8 days. On the theory of PANDAS, DD was started on prophylactic antibiotics, Amoxicillin 250mg BID. We were also trying to prevent re-colonization by eradicating GABHS in sister.
By April 2nd, Sibling presented with a rash that was thought by pediatrician to be viral (appearance like Rubella rather than Scarlet Fever). Augmentin was discontinued as a precaution. Sibling was cultured negative for strep.
On April 14th, Sibling presented with shingles and recultured heavy positive for GABHS. Sibling was given 5 day course of azithromycin for GABHS. Her throat culture was negative 3 weeks later (May 15th).
On April 28, a throat culture on DD for GABHS was negative. As she was still on Amoxicillin at that time, we suspect it was a false negative culture. Titers were repeated and were even lower than the previous month [ASO at 28.1 and anti-Dnase-B was < 60]. Different laboratories were used to run tests so comparing tests is somewhat suspect; however, there was no elevation despite positive cultures on March 23rd.
Overlapping with this time, DD had dilated pupils, increased defiant behavior, and greater clumsiness. Due to concerns that some of these symptoms might be from Lexapro (akathesia, possible serotonin syndrome), Lexapro was discontinued in mid-May. DD had significant withdrawal symptoms (headache, sweating, abdominal discomfort, flu-like symptoms, anxiety, "zaps", and nausea). Pupil dilation disappeared but anorexia nervosa symptoms returned in full force. DD displayed a renewed obsession about weight and the return of extremely restrictive eating. DD continued to exhibit weight loss ( -0.5 lb/wk). Prozac (5mg titrated to 10mg) was started to soften withdrawal. At this time, Amoxicillin was temporarily discontinued while she received Cefuroxime 250mg BID for ten days. There was no apparent improvement in symptoms on the Cephalosporin. We also gave DD 200mg of Ibuprofen several times during mid-May and we did notice a temporary improvement in mood and interest in food after receiving this NSAID. Often she fell asleep shortly after receiving the Ibuprofen.
By June 1st, DD was exhibiting significant weight loss, suicidal statements, and significant contamination fears. She did not wash her hands for 3 weeks in May because "we wanted her to" and "because she saw ghosts coming out of the tap." On the theory that DD's strep was intracellular (i.e., not reachable by Penicillin/Amoxicillin) and because Sibling's strep was eradicated on Azithromycin, DD was started on Azithromycin 250mg/daily. DD's mood improved on the 5th day of Azithromycin. We also added a probiotic. Substantial improvement was seen on the 9th day of Azithromycin with Anorexia Nervosa symptoms disappearing by the 15th day. By July 4th, verbal tic and all OCD symptoms resolved. By July 30th, movement disorders/measurement rituals resolved. DD also received Ibuprofen, usually 200mg every morning from mid-June until the end of July as we felt this relieved some of her symptoms. DD is still on 10mg Prozac and 250mg Azithromycin daily, along with a multi-vitamin and probiotic.
DD remained symptom free for the remainder of the summer and September. In October we noticed a mild increase in tantrums and fine motor abnormalities, vocal tics, with occasional "measurement" ritual movements, despite still being on Azithromycin. During the 3rd week of October her asymptomatic sister once again cultured positive for GABHS and received another 5 day course of Azithromycin. After Sibling's course of antibiotics, DD's symptoms improved. Two weeks later, some fine motor abnormalities (hand tremors) are reappearing. A repeat throat culture of Sibling was negative (3 weeks after her Azithromycin course). According to staff at DD and Sibling's school, they are seeing lots of strep this year.
Retrospective:
Prior OCD incident in 2005:
Sibling had an upper respiratory infection/ear infection on 2/24/05 that was treated with a 5 day course of Azithromycin. On 3/03/2005, DD had sudden onset daytime urinary frequency which preceded a high fever by 2 days. DD was not treated with antibiotics as no bacteria was found in urine. No throat culture was done. Five days after that, Sibling developed a high fever and vomiting. Around this time, DD also developed compulsive hand washing and worried about swallowing a fly. (A neighbor's child was very ill and died in June. DD was quite worried about getting sick.) After several weeks these behaviors eventually subsided.
Interestingly, neither DD nor Sibling had been cultured for GABHS prior to the March 23rd, 2008 tests. This is true despite Sibling having almost 20 ear/upper respiratory infections in 4 years and DD having spiked fevers coincident with Sibling's symptoms. We now realize that neither Sibling nor DD present with an inflamed sore throat when they do culture positive for GABHS. While carriage is possible and might explain low titers, it appears that an imbalance to carriage (tooth extraction, treatment with antibiotics, other flora/strains) do have some correlation with behavioral events.
In discussion with Dr. Ed Kaplan on latest GABHS research, he comments that "carriage remains an enigma" and is "unlikely as benign as originally thought."
Back to top
CASE #2 – Girl, Age 7 January 2008
Sunnyvale, California Treatment: Prophy. Azithro
DETAILED HISTORY
History of Present Illness:
DD is an 8-year old female who was healthy prior to December 2007. In Feb 2008, she exhibited food refusal with acute dramatic decrease in food intake following tooth extractions the week of March 7th. By March 13th, she had developed a vocal tic, exhibited significant contamination fears (wouldn't wash hands), was seeing "ghosts", obsessing about being "fat" and worrying about being "late." She also developed complex measurement rituals, had movement compulsions and involuntary arm shakes with increased clumsiness and illegible handwriting. On March 15th, at pediatrician's office she was psychotic with suicidal wishes ("I need to die", "I need to be killed", "Please kill me").
She was hospitalized on March 20th at LPCH comprehensive care for malnutrition and received psychiatric consult. The provisional diagnosis was PANDAS induced OCD/Anorexia Nervosa. Sedimentation rate was normal. Differential CBC was normal with exception of elevated Ketones (3+) and eosinophils (.38). Initial EKG was abnormal with elongated QTc interval. Cultures were positive for GABHS (throat and perianal). She was started on boost therapy for Anorexia Nervosa, Klonopin (.75mg) for anxiety, and on 3rd day Augmentin for strep and Lexapro (5mg) for OCD. 24hrs after Augmentin, her mood improved and with strong encouragement was able to take meals. She still had compulsions and rituals associated with eating.
DD was released March 27th with stable vital signs. Weight was monitored at LPCH ED clinic, with psych monitoring and CBT with psychiatrist. Lexapro was increased to 10mg to help OCD symptoms. Culture on sibling showed asymptomatic GABHS infection. On theory of PANDAS, DD was put on prophylaxis Amoxicillin while trying to prevent re-colonization by eradicating GABHS in sister.
Despite Augmentin, sister re-cultured positive in mid-April. Sister was given azithromycin and culture was negative at 3 weeks (end of May). Overlapping with this time, DD had dilated pupils, increased defiant behavior, and greater clumsiness. Psychiatrist and neurologist felt increased symptoms might be from Lexapro (akathesia). Lexapro was stopped and DD had significant withdrawal symptoms (headache, sweating, abdominal discomfort, flu-like symptoms, anxiety, "zaps", and nausea). Pupil dilation disappeared but nausea led to food refusal with increased obsession about weight. DD continued to exhibit weight loss (.5 lb/wk). Prozac (5mg titrated to 10mg) was started to soften withdrawl.
By June, DD was exhibiting significant weight loss, suicidal statements, significant contamination fears. On theory that the strep was intracellular (i.e., not reachable by Penicillin), DD was given Azithromycin propholaxis for 30 days. Substantial improvement was seen on 9th day of azithromycin with Anorexia Nervosa symptoms disappearing by 15th day. By July 4th, verbal tic and all OCD symptoms resolved. By July 30th, movement disorders/measurement rituals resolved. DD remains on 10mg Prozac and 250mg azithromycin. Provisional diagnosis is PANDAS or atypical Sydenham Chorea.
Jan 23 2008
DD had a major tantrum (screaming at preschool about 1 hour before we noticed she had a fever on the afternoon of 1/23). Another parent remarked that Her behavior was "very out of character".
Jan 23-28th
Likely strep infection, high fever, 5 kids sick in class on the 24th, 1 cultured positive (that we know of) for strep.
Feb 1st-20th
Emotional lability, separation anxiety, social anxiety, irritability, "difficult" behavior, tantrums persisted throughout Feb. DD stopped eating breakfast and then afternoon snacks. She started to insist that she be woken up 2 hours before school started.
Feb 21st
Tooth extraction (with nitrous oxide), significant exacerbation of symptoms and restrictive eating.
March 5th
Called pediatrician -- thinks it might be social anxiety and refers to psych, twitch/****y movements.
March 7th
Second tooth extraction (with nitrous oxide), even higher exacerbation of symptoms, verbal tic, restrictive eating worse (one meal/day), begins measurement rituals. DD demonstrates "classic" anorexia nervosa symptoms.
March 10th
DD wakes up at 4 and 5 am, anxious about being late for school. Lisa calls pediatrician on 3/11 because DD is barely sleeping or eating.
March 13th
Has dropped 7 lbs (15% of body weight since Mar 1st).
March 17th
Pediatrician office, suicidal statements and full out psychotic events asked to return in 3 days.
March 20th
Observed at pediatricians office, contamination fears, verbal tic, barely able to walk to car. Concerned about vitals and malnutrition.
March 21st
Take to LPCH eating disorder for malnutition (secondary diagnosis is anorexia nervosa). Our theory is PANDAS and we request ASO and Anti-DNASE B, throat culture (positive on 3/24).
March 22nd
Start on refeeding therapy (pediasure), Klonopin -- increasing OCD, contamination fears, demanding behavior.
March 23rd
High OCD behavior - organizes room, highly demanding, extreme separation anxiety.
March 24th
Cultured perianal (positive for strep on 3/26), start augmentin, Klonapin and Lexapro (SSRI).
March 25th
Sister cultured positive for strep. Start Augmentin to clear.
March 25th
Dramatic improvement of behavior -- 2nd day of augmentin. Able to eat lunch, dinner.
March 26th
Dramatic reduction in OCD behavior, still high separation anxiety.
March 27th
Released from hospital, kept on Augmentin and then propholaxis amoxicillin while trying to clear sister.
April 3rd
Sister gets rash (rubella like, does not appear to be scarlet fever), augmentin discontinued on sister.
April 12th
Sister gets shingles (sigh), OCD features growing again, food restriction growing.
April 18th
Sister cultures positive for strep again.
April 19th
Sister starts azithromycin (5 days).
May 6th
Extreme defiant behavior -- pees on doctors floor as defiant behavior. Showing sweating, stumbling, concerned about SSRI.
May 8th
Taken off Lexapro -- headaches, anorexia nervosa returns in full force.
May 16th
10 day course of cefuroxime -- in case strep is resistant to amoxicillin (no benefit seen).
May 17th
Sister is cultured clear (3 weeks from last postive culture) – looks like azithromycin gets strain.
May 18th
Significant food restriction, start Prozac.
May 21st
Significant weight loss of last month. Approximate loss 1lb per week. Gave advil for headache – saw improvement in mood. Something about NSAIDs?
May 27th
Very concerned about weight loss. OCD contamination fears growing. Separation anxiety hitting hard.
June 2nd
Start azithromycin (5 day course, 250mg/day).
June 4th
Improvement in mood. Eating now lunch and dinner (but no breakfast).
June 10th
Started second round of azithromycin.
June 13th
Dramatic improvement in mood and symptoms. Eating breakfast, lunch and dinner. Contamination fears resolve for first time in 2 months!
June 20th
OCD questions gone. Restrictive eating gone. Eating snacks.
June 21st-July4th
Improvement in mood. Some motion tics still present.
July 5th
Motion tics gone or extremely infrequent.
July 6th-August 1st
Some social anxiety remains. All OCD behavior gone. Motion + verbal tics go
Sunnyvale, California
Onset: February 2008
Treatment: Prophy. Azithro
Summary of the Case
Detailed Case History
Our daughter, DD, was a healthy child prior to January 2008, when she turned 7½ years old. On the afternoon of January 23, 2008 she became sick with a fever that lasted for three days. On the first day of the fever she also complained of a sore throat. Four other children in her classroom were out sick at the same time, at least one of which was diagnosed with strep throat. After the fever resolved we noticed puzzling behavior changes in her. These early symptoms, beginning in late January and early February, included:
food restriction: initially no breakfast, then no snacks
severely increased anxiety: social anxiety, separation anxiety, anxiety over being late to school (insisting on waking 2 hours before school so she wouldn't be late)
emotional lability/defiance: many tantrums (including a screaming tantrum ½ hour before her fever started on Jan. 23), "difficult” behavior, irritability, lots of defiance
social withdrawal: she stopped playing with neighborhood children and children at school
touching rituals: sucking in chest and feeling ribs and spine
headaches: including ocular migraines when she saw "ghosts” and iridescent bubbles
On Feb 21st, DD's symptoms worsened after a tooth extraction (for orthodontic reasons). All of her prior symptoms intensified and she exhibited:
vocal utterances: a grunting/soft verbal tic
motor abnormalities: a lack of smoothness in her fine motor skills, increased clumsiness
demanding/controlling: irrational demands about things to be done in certain way. Needed parents to stand or sit. Became very controlling.
Note: on March 1st, we had a sleepover at our house. Four days later, one of the friends (10 years old) was diagnosed with GABHS (had a high fever, sore throat and cultured positive).
DD’s symptoms worsened after a second tooth extraction on March 7th. At the time, we wondered if this was related to a reaction to nitrous oxide, however, in retrospect we believe colonized strep was released into the blood stream. Her symptoms worsened to include:
OCD behaviors: insisting that we go through doorways in a certain way, contamination fears, multiple rituals that had to be completed in particular order.
anorexia nervosa: severe fear of gaining weight, distorted view of body.
complex arm motion: an unconscious complex movement of the right arm touching ribs, chest and then bottom of chin with back of hand (video available).
measurement rituals: a complex measurement of arms, legs, stomach which had to be completed in a particular way (video available).
depression and suicidal statements: declarations of needing to be killed.
DD became obsessed with her weight. She was terrified of weighing more than 50 pounds. She exhibited compulsive questioning rituals with each meal, "Will this make my stomach grow?"... "Does this have sugar in it* (see note below)... "Are my arms bigger than Sibling's?" (Sibling is her 5-year-old sister). DD would study herself in the mirror, weighed herself many times a day, called her muscles fat, and was sucking in her chest and feeling her ribs and spine. Her drawings of people became distorted with heads oddly shaped and distorted bodies. Her weight plummeted as she would eat no more than 1 small meal per day. When asked why she was not eating, she'd answer "so when I do eat I won't get over 50 lbs." We disabled the scale and DD became obsessed about getting a new scale.
*Note: DD's obsession with sugar appears to have been triggered by a school Scholastic Healthy Eating handout which included a chart with the sugar content of various foods (soda, ice cream, etc.). She kept this handout in her back pack for many weeks. As parents, we have never expressed concern regarding the sugar content of food, aside from asking her to brush her teeth after eating candy.
By mid-March DD developed complex measurement rituals, had movement compulsions, and involuntary arm shakes with increased clumsiness and illegible handwriting. Measurement rituals included encircling her legs with her fingers to ensure her legs would "fit", measuring her wrists, and measuring the distance from her back to her stomach. This ritual was extremely pronounced during meals and she would have to stop and repeat the ritual if she "got it wrong."
On March 15th, at her pediatrician's office, she was psychotic with suicidal statements (she was inconsolable and was screaming "I need to die", "I need to be killed", "Please kill me"). She also emphatically stated many times at home that she would "rather die than eat breakfast" and that she considered herself to be a "bad person." When asked why, she said she was bad "because she was in speech therapy." DD was visibly depressed.
She was hospitalized on March 20th at LPCH comprehensive care (inpatient eating disorder clinic) for malnutrition with hypothermia and hypotension. She had dropped 15% of her body weight in 2 weeks. Her admission weight was 19.5kg; height was 122cm. The provisional psychiatric diagnosis was PANDAS induced OCD/Anorexia Nervosa. Sedimentation rate was normal. CBC was normal with exception of eosinophils (0.38). Her UA showed 3+ Ketones. Initial EKG was abnormal with elongated QTc interval. Cultures were positive for GABHS (throat and perianal). Interestingly, despite positive culture and likely infection since January, DD's ASO and anti-Dnase-B were not elevated relative to norms [ASO (39, school-age children ref. range < 166 IU/ml)) and anti-Dnase-B (149, expected value < = 400)]. She was started on boost therapy (re-feeding) for Anorexia Nervosa, Klonopin (0.75mg) for anxiety, and on the 3rd day Augmentin for strep and Lexapro (5mg) for OCD. DD was able to drink Pediasure provided it was called "medicine" and not "food."
24hrs after Augmentin was started, DD's mood improved dramatically with her drawings returning to normal proportions. It was as if a cloud has passed and she smiled for the first time in a month. With encouragement she was now able to take full meals. She still had compulsions and rituals associated with eating, but was satisfied with one round of questions rather than continuous checking.
At this same time (March 24), a rapid strep test on her asymptomatic 5-year-old sister Sibling, was positive. Sibling was started on Augmentin (10 days rx) but received 7 days as she developed a rash after 1 week on the antibiotic (see below).
DD was released March 27th with stable vital signs. Weight was monitored at LPCH outpatient ED clinic. Psychiatric monitoring and CBT was started with a private practice pediatric psychiatrist specializing in OCD and ED. Lexapro was increased to 10mg to help OCD symptoms. Klonopin was tapered off over 8 days. On the theory of PANDAS, DD was started on prophylactic antibiotics, Amoxicillin 250mg BID. We were also trying to prevent re-colonization by eradicating GABHS in sister.
By April 2nd, Sibling presented with a rash that was thought by pediatrician to be viral (appearance like Rubella rather than Scarlet Fever). Augmentin was discontinued as a precaution. Sibling was cultured negative for strep.
On April 14th, Sibling presented with shingles and recultured heavy positive for GABHS. Sibling was given 5 day course of azithromycin for GABHS. Her throat culture was negative 3 weeks later (May 15th).
On April 28, a throat culture on DD for GABHS was negative. As she was still on Amoxicillin at that time, we suspect it was a false negative culture. Titers were repeated and were even lower than the previous month [ASO at 28.1 and anti-Dnase-B was < 60]. Different laboratories were used to run tests so comparing tests is somewhat suspect; however, there was no elevation despite positive cultures on March 23rd.
Overlapping with this time, DD had dilated pupils, increased defiant behavior, and greater clumsiness. Due to concerns that some of these symptoms might be from Lexapro (akathesia, possible serotonin syndrome), Lexapro was discontinued in mid-May. DD had significant withdrawal symptoms (headache, sweating, abdominal discomfort, flu-like symptoms, anxiety, "zaps", and nausea). Pupil dilation disappeared but anorexia nervosa symptoms returned in full force. DD displayed a renewed obsession about weight and the return of extremely restrictive eating. DD continued to exhibit weight loss ( -0.5 lb/wk). Prozac (5mg titrated to 10mg) was started to soften withdrawal. At this time, Amoxicillin was temporarily discontinued while she received Cefuroxime 250mg BID for ten days. There was no apparent improvement in symptoms on the Cephalosporin. We also gave DD 200mg of Ibuprofen several times during mid-May and we did notice a temporary improvement in mood and interest in food after receiving this NSAID. Often she fell asleep shortly after receiving the Ibuprofen.
By June 1st, DD was exhibiting significant weight loss, suicidal statements, and significant contamination fears. She did not wash her hands for 3 weeks in May because "we wanted her to" and "because she saw ghosts coming out of the tap." On the theory that DD's strep was intracellular (i.e., not reachable by Penicillin/Amoxicillin) and because Sibling's strep was eradicated on Azithromycin, DD was started on Azithromycin 250mg/daily. DD's mood improved on the 5th day of Azithromycin. We also added a probiotic. Substantial improvement was seen on the 9th day of Azithromycin with Anorexia Nervosa symptoms disappearing by the 15th day. By July 4th, verbal tic and all OCD symptoms resolved. By July 30th, movement disorders/measurement rituals resolved. DD also received Ibuprofen, usually 200mg every morning from mid-June until the end of July as we felt this relieved some of her symptoms. DD is still on 10mg Prozac and 250mg Azithromycin daily, along with a multi-vitamin and probiotic.
DD remained symptom free for the remainder of the summer and September. In October we noticed a mild increase in tantrums and fine motor abnormalities, vocal tics, with occasional "measurement" ritual movements, despite still being on Azithromycin. During the 3rd week of October her asymptomatic sister once again cultured positive for GABHS and received another 5 day course of Azithromycin. After Sibling's course of antibiotics, DD's symptoms improved. Two weeks later, some fine motor abnormalities (hand tremors) are reappearing. A repeat throat culture of Sibling was negative (3 weeks after her Azithromycin course). According to staff at DD and Sibling's school, they are seeing lots of strep this year.
Retrospective:
Prior OCD incident in 2005:
Sibling had an upper respiratory infection/ear infection on 2/24/05 that was treated with a 5 day course of Azithromycin. On 3/03/2005, DD had sudden onset daytime urinary frequency which preceded a high fever by 2 days. DD was not treated with antibiotics as no bacteria was found in urine. No throat culture was done. Five days after that, Sibling developed a high fever and vomiting. Around this time, DD also developed compulsive hand washing and worried about swallowing a fly. (A neighbor's child was very ill and died in June. DD was quite worried about getting sick.) After several weeks these behaviors eventually subsided.
Interestingly, neither DD nor Sibling had been cultured for GABHS prior to the March 23rd, 2008 tests. This is true despite Sibling having almost 20 ear/upper respiratory infections in 4 years and DD having spiked fevers coincident with Sibling's symptoms. We now realize that neither Sibling nor DD present with an inflamed sore throat when they do culture positive for GABHS. While carriage is possible and might explain low titers, it appears that an imbalance to carriage (tooth extraction, treatment with antibiotics, other flora/strains) do have some correlation with behavioral events.
In discussion with Dr. Ed Kaplan on latest GABHS research, he comments that "carriage remains an enigma" and is "unlikely as benign as originally thought."
Back to top
CASE #2 – Girl, Age 7 January 2008
Sunnyvale, California Treatment: Prophy. Azithro
DETAILED HISTORY
History of Present Illness:
DD is an 8-year old female who was healthy prior to December 2007. In Feb 2008, she exhibited food refusal with acute dramatic decrease in food intake following tooth extractions the week of March 7th. By March 13th, she had developed a vocal tic, exhibited significant contamination fears (wouldn't wash hands), was seeing "ghosts", obsessing about being "fat" and worrying about being "late." She also developed complex measurement rituals, had movement compulsions and involuntary arm shakes with increased clumsiness and illegible handwriting. On March 15th, at pediatrician's office she was psychotic with suicidal wishes ("I need to die", "I need to be killed", "Please kill me").
She was hospitalized on March 20th at LPCH comprehensive care for malnutrition and received psychiatric consult. The provisional diagnosis was PANDAS induced OCD/Anorexia Nervosa. Sedimentation rate was normal. Differential CBC was normal with exception of elevated Ketones (3+) and eosinophils (.38). Initial EKG was abnormal with elongated QTc interval. Cultures were positive for GABHS (throat and perianal). She was started on boost therapy for Anorexia Nervosa, Klonopin (.75mg) for anxiety, and on 3rd day Augmentin for strep and Lexapro (5mg) for OCD. 24hrs after Augmentin, her mood improved and with strong encouragement was able to take meals. She still had compulsions and rituals associated with eating.
DD was released March 27th with stable vital signs. Weight was monitored at LPCH ED clinic, with psych monitoring and CBT with psychiatrist. Lexapro was increased to 10mg to help OCD symptoms. Culture on sibling showed asymptomatic GABHS infection. On theory of PANDAS, DD was put on prophylaxis Amoxicillin while trying to prevent re-colonization by eradicating GABHS in sister.
Despite Augmentin, sister re-cultured positive in mid-April. Sister was given azithromycin and culture was negative at 3 weeks (end of May). Overlapping with this time, DD had dilated pupils, increased defiant behavior, and greater clumsiness. Psychiatrist and neurologist felt increased symptoms might be from Lexapro (akathesia). Lexapro was stopped and DD had significant withdrawal symptoms (headache, sweating, abdominal discomfort, flu-like symptoms, anxiety, "zaps", and nausea). Pupil dilation disappeared but nausea led to food refusal with increased obsession about weight. DD continued to exhibit weight loss (.5 lb/wk). Prozac (5mg titrated to 10mg) was started to soften withdrawl.
By June, DD was exhibiting significant weight loss, suicidal statements, significant contamination fears. On theory that the strep was intracellular (i.e., not reachable by Penicillin), DD was given Azithromycin propholaxis for 30 days. Substantial improvement was seen on 9th day of azithromycin with Anorexia Nervosa symptoms disappearing by 15th day. By July 4th, verbal tic and all OCD symptoms resolved. By July 30th, movement disorders/measurement rituals resolved. DD remains on 10mg Prozac and 250mg azithromycin. Provisional diagnosis is PANDAS or atypical Sydenham Chorea.
Jan 23 2008
DD had a major tantrum (screaming at preschool about 1 hour before we noticed she had a fever on the afternoon of 1/23). Another parent remarked that Her behavior was "very out of character".
Jan 23-28th
Likely strep infection, high fever, 5 kids sick in class on the 24th, 1 cultured positive (that we know of) for strep.
Feb 1st-20th
Emotional lability, separation anxiety, social anxiety, irritability, "difficult" behavior, tantrums persisted throughout Feb. DD stopped eating breakfast and then afternoon snacks. She started to insist that she be woken up 2 hours before school started.
Feb 21st
Tooth extraction (with nitrous oxide), significant exacerbation of symptoms and restrictive eating.
March 5th
Called pediatrician -- thinks it might be social anxiety and refers to psych, twitch/****y movements.
March 7th
Second tooth extraction (with nitrous oxide), even higher exacerbation of symptoms, verbal tic, restrictive eating worse (one meal/day), begins measurement rituals. DD demonstrates "classic" anorexia nervosa symptoms.
March 10th
DD wakes up at 4 and 5 am, anxious about being late for school. Lisa calls pediatrician on 3/11 because DD is barely sleeping or eating.
March 13th
Has dropped 7 lbs (15% of body weight since Mar 1st).
March 17th
Pediatrician office, suicidal statements and full out psychotic events asked to return in 3 days.
March 20th
Observed at pediatricians office, contamination fears, verbal tic, barely able to walk to car. Concerned about vitals and malnutrition.
March 21st
Take to LPCH eating disorder for malnutition (secondary diagnosis is anorexia nervosa). Our theory is PANDAS and we request ASO and Anti-DNASE B, throat culture (positive on 3/24).
March 22nd
Start on refeeding therapy (pediasure), Klonopin -- increasing OCD, contamination fears, demanding behavior.
March 23rd
High OCD behavior - organizes room, highly demanding, extreme separation anxiety.
March 24th
Cultured perianal (positive for strep on 3/26), start augmentin, Klonapin and Lexapro (SSRI).
March 25th
Sister cultured positive for strep. Start Augmentin to clear.
March 25th
Dramatic improvement of behavior -- 2nd day of augmentin. Able to eat lunch, dinner.
March 26th
Dramatic reduction in OCD behavior, still high separation anxiety.
March 27th
Released from hospital, kept on Augmentin and then propholaxis amoxicillin while trying to clear sister.
April 3rd
Sister gets rash (rubella like, does not appear to be scarlet fever), augmentin discontinued on sister.
April 12th
Sister gets shingles (sigh), OCD features growing again, food restriction growing.
April 18th
Sister cultures positive for strep again.
April 19th
Sister starts azithromycin (5 days).
May 6th
Extreme defiant behavior -- pees on doctors floor as defiant behavior. Showing sweating, stumbling, concerned about SSRI.
May 8th
Taken off Lexapro -- headaches, anorexia nervosa returns in full force.
May 16th
10 day course of cefuroxime -- in case strep is resistant to amoxicillin (no benefit seen).
May 17th
Sister is cultured clear (3 weeks from last postive culture) – looks like azithromycin gets strain.
May 18th
Significant food restriction, start Prozac.
May 21st
Significant weight loss of last month. Approximate loss 1lb per week. Gave advil for headache – saw improvement in mood. Something about NSAIDs?
May 27th
Very concerned about weight loss. OCD contamination fears growing. Separation anxiety hitting hard.
June 2nd
Start azithromycin (5 day course, 250mg/day).
June 4th
Improvement in mood. Eating now lunch and dinner (but no breakfast).
June 10th
Started second round of azithromycin.
June 13th
Dramatic improvement in mood and symptoms. Eating breakfast, lunch and dinner. Contamination fears resolve for first time in 2 months!
June 20th
OCD questions gone. Restrictive eating gone. Eating snacks.
June 21st-July4th
Improvement in mood. Some motion tics still present.
July 5th
Motion tics gone or extremely infrequent.
July 6th-August 1st
Some social anxiety remains. All OCD behavior gone. Motion + verbal tics go
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CASE #3 – Girl, Age 7
Sunnyvale, California
Onset: Fall 2007
Treatment: Azithro
DD's symptoms started last October with headaches and stomach aches. She had had a sore throat and swollen glands in her neck for about 6 weeks. She was tested for strep, which came back negative, and we were told it was a reoccurring viral infection. She started changing in dramatic and heartbreaking ways.
She started feeling the need to pee every 60 seconds and would be inconsolable and panic stricken when nothing came out. She would cry "Why can't I pee, is God punishing me?" I took her to the Dr. again who said her sore throat was viral and they did a urinalysis to rule out a bladder infection.
She stopped eating saying that she was either going to choke or that her food was poisoned. It was VERY difficult getting her to eat anything. I was concerned about malnutrition and used every trick in the book to get her to eat. If we walked past a bush she knew was poisonous, she would insist that a leaf of it had blown off and into her mouth. She would start spitting to get rid of it. Then she started walking past things like this with her hand over her mouth.
She became irrational, and I could not reason with her. She became argumentative, and highly emotional. She had significant problems making choices.
She developed severe separation anxiety, and cried when I dropped her off at school. She needed multiple reassurances that I was positive that I would be back to pick her up. She obsessed "what would happen to her" if something happened to me.
She thought she was swallowing strange objects, like pen caps or homework papers, anything that might go missing. She would say "I know I didn’t swallow it, but I think I did anyway". She would be panic stricken until she had found the lost object.
She had a hard time falling asleep. She would ask if she was going to wake up in the morning, and how did I know something bad wouldn't happen in the night. She asked repeatedly if I was sure she wouldn’t die in her sleep. She started waking up with nightmares about parasites.
She also became terrified of being "locked in" and insisted on doors being left open in rooms or buildings, or windows rolled down so she wouldn't become hysterical.
She didn't want to "go anywhere, just straight home". She didn't want to go to any of her favorite places. She became less social at school, and sat alone on the playground. She would sometimes sit and stare with her eyes very large. Other times she expressed almost a terror of being "bored". I had to keep her constantly occupied with distractions through the worst of it.
She cried frequently "Mama, why am I so sad, I'll never be happy again, everything is different. Why is everything so different?"
I was so shocked and grief stricken. She was 8 years old, and her beautiful personality was completely gone. The pediatrician could offer me no insight or understanding of what was happening on a physical or mental level, she just said find a psychiatrist as soon as possible.
After I researched PANDAS online, I requested bloodwork be done. Everything came back "normal". By Christmas she was 90-95% herself again.
We saw Dr. D. at CHC, who eventually put her on a low dose (12.5m) of Zoloft ( I think in January), which she is still on (to give her brain a rest).
Then in March, she contracted Fifths disease, and it started again, maybe 60% strength, and lasted about 4 – 6 weeks before tapering off. Her Zoloft was doubled to 25m. She hasn't had a full blown illness again, but her baseline has changed.
I live in fear of her next illness. On Dr. K's website, he mentions that PANDAS and PITAND are probably the same thing, it's just that we don't know all the bacteria and viruses (or vaccinations) that can trigger the autoimmune response yet. He feels that ANY infectious agent can trigger these horrible symptoms. DD's triggers seem to be infections with FEVER and SWOLLEN glands, whether from a virus or bacteria.
What is equally disturbing is that between episodes, DD's baseline personality seems to deteriorate a little more. She is having problems in the area of memory, attention, rigid thinking, empathy, social interaction, anger, emotional liability, rational thinking, decision making, and anxiety. I also believe her handwriting and drawing skills have been adversely effected.
On November 15, DD's pediatrician agreed to a 30 day trial of Azithromicyn. As I write this document, she is on day 21 and I believe I have seen a measurable and significant improvement in DD's mood and behavior, far quicker and broader than I ever experienced with the Zoloft or therapy.
History – Scarlet Fever at 2 years of age.
In October, DD underwent a complete Neuropsychological Evaluation at Children's Health Council. The most significant findings were that DD's full scale IQ was 120 (91st percentile), and her verbal comprehension index was 134 (99th percentile), her working memory index was 88 (21st percentile). Additionally, it was noted that she does suffer from issues that cause social problems for her in school.
Autoimmune disease is common in my family history, my mother has MS, for example. I have one brother with celiac disease, and one who had ulcerated colitous serious enough to warrant a colostomy at age 19.
CASE #4 – Boy, Age 7
Chicago, Illinois
Onset: Sept. 2005
Treatment: IVIG, Proph. ABX-Keflex
September 23 2005 my 7 year old son came home from school with a low grade fever, no other symptoms. We gave him some Tylenol and put him to bed. At 1:00 a.m. he woke up frantic, "bad thoughts" , OCD, etc. We calmed him down and got him to bed. By the morning it was progressing rapidly (our clinical case is on Dr. K. website - 8 year old chicago boy). My son did not have a sore throat and had never had strep before so the thought of strep was the farthest from my mind. By 10:00 p.m. the next day we had to turn off TV as he would get "bad thoughts". I decided to call a Pediatric Neruologist and Pediatric Psych. at 48 hours into the disease. It was very apparent that somthing really bad was developing. I drove to the Ped. Psych. doctors office (without my son). He asked if he had come home sick and I said yes. He then said to take my son to the ER and have them call him on his cell. He believed my son has PANDAS. I did and we went. My Son's ASO were at 280-300 ish and his D-nase were at 1350. This is 72 hours into the disease. They gave him a shot of antibiotic at the ER and put him on 1500 mg of AUG.
I went home and called 2 of my friends, who are local doctors, who called Childrens and sent us there. Go figure, children is where Dr. S. is, one of the most recognized doctors to dispute PANDAS. After 8 hours in the infectious disease group we left. My Son was getting better 4 days into the disease.
Remember this is 3 1/2 years ago... even more unknown.
Staying up 24 hours researching I found out about Dr. K. and Dr. Kim at Minnesota and K.W., who at the time was a graduate student under Dr. Kim, studying PANDAS from the molecular level. KW had recieved the largest medical grant possible and he used it to study PANDAS. KW is now part of the Yale group.
7 days in we saw Dr. K. who put my Son on a steriod burst. It got worse before it got better, but after day 12, 80 percent of his symptoms were gone. By day 24 all the OCD symptoms were gone.
What we still had was severe separation anxiety, his tolerence level for siblings and parents were low, and he had rages and hyperactivity.
Dr. K. had to do weekly blood draws to test his D-nase levels. They went from 1300 to 950 after receiving treatment, but then he stagnated.
Feb. of 2006 we received the IVIG treatment. My Son blood was sent to KW and was utilized for his study.
In march of '06, I can explain a moment when his father and I were sitting with him on the floor. He was tying his shoes. He looked up and gave us a big smile and his eyes sparkled and he said "I'm gonna go play outside."
We looked at each other and new he was back. We all know that its in their eyes... the worry. This worry was gone.
Its 3 years later. The separation anxiety is gone, hyperactivity is gone, and rages are gone. He still has a short temper which may be typical of a 10 year old.
He is on a daily antibiotic for preventative measures.
My thoughts and prayers are with all of you and your families and hope that we can get the word out about this disease. Every day that passes when a child has PANDAS counts!
here you will find rest of the cases http://pandasnetwork.org/cases.html
Sunnyvale, California
Onset: Fall 2007
Treatment: Azithro
DD's symptoms started last October with headaches and stomach aches. She had had a sore throat and swollen glands in her neck for about 6 weeks. She was tested for strep, which came back negative, and we were told it was a reoccurring viral infection. She started changing in dramatic and heartbreaking ways.
She started feeling the need to pee every 60 seconds and would be inconsolable and panic stricken when nothing came out. She would cry "Why can't I pee, is God punishing me?" I took her to the Dr. again who said her sore throat was viral and they did a urinalysis to rule out a bladder infection.
She stopped eating saying that she was either going to choke or that her food was poisoned. It was VERY difficult getting her to eat anything. I was concerned about malnutrition and used every trick in the book to get her to eat. If we walked past a bush she knew was poisonous, she would insist that a leaf of it had blown off and into her mouth. She would start spitting to get rid of it. Then she started walking past things like this with her hand over her mouth.
She became irrational, and I could not reason with her. She became argumentative, and highly emotional. She had significant problems making choices.
She developed severe separation anxiety, and cried when I dropped her off at school. She needed multiple reassurances that I was positive that I would be back to pick her up. She obsessed "what would happen to her" if something happened to me.
She thought she was swallowing strange objects, like pen caps or homework papers, anything that might go missing. She would say "I know I didn’t swallow it, but I think I did anyway". She would be panic stricken until she had found the lost object.
She had a hard time falling asleep. She would ask if she was going to wake up in the morning, and how did I know something bad wouldn't happen in the night. She asked repeatedly if I was sure she wouldn’t die in her sleep. She started waking up with nightmares about parasites.
She also became terrified of being "locked in" and insisted on doors being left open in rooms or buildings, or windows rolled down so she wouldn't become hysterical.
She didn't want to "go anywhere, just straight home". She didn't want to go to any of her favorite places. She became less social at school, and sat alone on the playground. She would sometimes sit and stare with her eyes very large. Other times she expressed almost a terror of being "bored". I had to keep her constantly occupied with distractions through the worst of it.
She cried frequently "Mama, why am I so sad, I'll never be happy again, everything is different. Why is everything so different?"
I was so shocked and grief stricken. She was 8 years old, and her beautiful personality was completely gone. The pediatrician could offer me no insight or understanding of what was happening on a physical or mental level, she just said find a psychiatrist as soon as possible.
After I researched PANDAS online, I requested bloodwork be done. Everything came back "normal". By Christmas she was 90-95% herself again.
We saw Dr. D. at CHC, who eventually put her on a low dose (12.5m) of Zoloft ( I think in January), which she is still on (to give her brain a rest).
Then in March, she contracted Fifths disease, and it started again, maybe 60% strength, and lasted about 4 – 6 weeks before tapering off. Her Zoloft was doubled to 25m. She hasn't had a full blown illness again, but her baseline has changed.
I live in fear of her next illness. On Dr. K's website, he mentions that PANDAS and PITAND are probably the same thing, it's just that we don't know all the bacteria and viruses (or vaccinations) that can trigger the autoimmune response yet. He feels that ANY infectious agent can trigger these horrible symptoms. DD's triggers seem to be infections with FEVER and SWOLLEN glands, whether from a virus or bacteria.
What is equally disturbing is that between episodes, DD's baseline personality seems to deteriorate a little more. She is having problems in the area of memory, attention, rigid thinking, empathy, social interaction, anger, emotional liability, rational thinking, decision making, and anxiety. I also believe her handwriting and drawing skills have been adversely effected.
On November 15, DD's pediatrician agreed to a 30 day trial of Azithromicyn. As I write this document, she is on day 21 and I believe I have seen a measurable and significant improvement in DD's mood and behavior, far quicker and broader than I ever experienced with the Zoloft or therapy.
History – Scarlet Fever at 2 years of age.
In October, DD underwent a complete Neuropsychological Evaluation at Children's Health Council. The most significant findings were that DD's full scale IQ was 120 (91st percentile), and her verbal comprehension index was 134 (99th percentile), her working memory index was 88 (21st percentile). Additionally, it was noted that she does suffer from issues that cause social problems for her in school.
Autoimmune disease is common in my family history, my mother has MS, for example. I have one brother with celiac disease, and one who had ulcerated colitous serious enough to warrant a colostomy at age 19.
CASE #4 – Boy, Age 7
Chicago, Illinois
Onset: Sept. 2005
Treatment: IVIG, Proph. ABX-Keflex
September 23 2005 my 7 year old son came home from school with a low grade fever, no other symptoms. We gave him some Tylenol and put him to bed. At 1:00 a.m. he woke up frantic, "bad thoughts" , OCD, etc. We calmed him down and got him to bed. By the morning it was progressing rapidly (our clinical case is on Dr. K. website - 8 year old chicago boy). My son did not have a sore throat and had never had strep before so the thought of strep was the farthest from my mind. By 10:00 p.m. the next day we had to turn off TV as he would get "bad thoughts". I decided to call a Pediatric Neruologist and Pediatric Psych. at 48 hours into the disease. It was very apparent that somthing really bad was developing. I drove to the Ped. Psych. doctors office (without my son). He asked if he had come home sick and I said yes. He then said to take my son to the ER and have them call him on his cell. He believed my son has PANDAS. I did and we went. My Son's ASO were at 280-300 ish and his D-nase were at 1350. This is 72 hours into the disease. They gave him a shot of antibiotic at the ER and put him on 1500 mg of AUG.
I went home and called 2 of my friends, who are local doctors, who called Childrens and sent us there. Go figure, children is where Dr. S. is, one of the most recognized doctors to dispute PANDAS. After 8 hours in the infectious disease group we left. My Son was getting better 4 days into the disease.
Remember this is 3 1/2 years ago... even more unknown.
Staying up 24 hours researching I found out about Dr. K. and Dr. Kim at Minnesota and K.W., who at the time was a graduate student under Dr. Kim, studying PANDAS from the molecular level. KW had recieved the largest medical grant possible and he used it to study PANDAS. KW is now part of the Yale group.
7 days in we saw Dr. K. who put my Son on a steriod burst. It got worse before it got better, but after day 12, 80 percent of his symptoms were gone. By day 24 all the OCD symptoms were gone.
What we still had was severe separation anxiety, his tolerence level for siblings and parents were low, and he had rages and hyperactivity.
Dr. K. had to do weekly blood draws to test his D-nase levels. They went from 1300 to 950 after receiving treatment, but then he stagnated.
Feb. of 2006 we received the IVIG treatment. My Son blood was sent to KW and was utilized for his study.
In march of '06, I can explain a moment when his father and I were sitting with him on the floor. He was tying his shoes. He looked up and gave us a big smile and his eyes sparkled and he said "I'm gonna go play outside."
We looked at each other and new he was back. We all know that its in their eyes... the worry. This worry was gone.
Its 3 years later. The separation anxiety is gone, hyperactivity is gone, and rages are gone. He still has a short temper which may be typical of a 10 year old.
He is on a daily antibiotic for preventative measures.
My thoughts and prayers are with all of you and your families and hope that we can get the word out about this disease. Every day that passes when a child has PANDAS counts!
here you will find rest of the cases http://pandasnetwork.org/cases.html
Mike555
Active member
lol... i work for a shelther.. and there's a little kid here who thinks i'm trying to harm him or something..... i have a problem because of ocd starring, i'm afraid of doing things in the same time as others........ walking in the same times as others, or eating in the same time as others, or doing movements in same time as others (walking), because of THE OCD STARRING!......... nowwwwwww......... EVERY ONE THINKS I ****ING FOLLOW THEN, ROFL...... they think i'm trying to harm PEOPLE... i tend to follow in the same time as others.... (can't control it).... and when i WALK BEHIND PEOPLE, I SLOW DOWN PURPOSLY SO I WON'T WALK IN THE SAME TIME AS OTHERS OR BY AN ACCIDENT SO I WON'T WALK, people think i follow them somehow, 1 GIRL WHEN I WALKED BEHIND HER WHEN I SLOWED DOWN TO AVOID an awkward situation when we walk in the same TIME, SHE THOUGHT I'M FOLLOWING here, and SHE RAN AWAY...... WTF? what can i do? facing the fear and walking in the same time as people? pffft.. this is too stupid involving other people in ur idiotic thing.. now THE PROBLEM IS.......... i work IN A HOUSE OF FOREIGN PEOPLE IN A NEW COUNTRY....... and they have A KID.. I WAS WITH HIS FATHER AND HIS SON, WE WERE doing something in farming.. i walked behind them coz i was the last one to come out of the building.. now i.. again got into this awkward situation that i almost walked in the same time AS THE OTHER PERSON, I HAD TO SLOW DOWN, LOOK TO THE SIDES........ THE KID LOOKED SCARED THE **** OUT.... and ran to his dad holding his HAND.. wtf.... now 1 week has passed and things are not calm between me and this 7 years old kid.. he thinks i'm trying to harm him now everytime... now i'm acting even more weird, i'm trying to avoid looking at his direction, i try to avoid looking at him, i try to avoid him, AND WHAT HAPPENS WHEN I AVOID? ........ SOMEHOW HE APPEARS MORE than usual infront of my eyes....... making everything more suspicius.. THIS MAKES ME NERVOUS WRITING ABOUT IT AS ****......... ..... THIS IS STUPID AS ****....... i want to bang my head somewhere..
i tried facing my fears, but this kid is still scared.. and in my thoughts constantly i think "he thinks i'm trying to harm him" ... i walked down stairs to REFILL MY BOTTLE WITH WATER... he LOOKED at me scared.. dunno what he was thinking.. he kind of rushed through the door and looked through the glass at me.........
i tried facing my fears, but this kid is still scared.. and in my thoughts constantly i think "he thinks i'm trying to harm him" ... i walked down stairs to REFILL MY BOTTLE WITH WATER... he LOOKED at me scared.. dunno what he was thinking.. he kind of rushed through the door and looked through the glass at me.........
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Mike555
Active member
update.. the kid today tried teasing me for some reason.. maybe to overcome his fears or something or to see if i'm a real threat or not.. not sure.. was swinging a stick at me.. i didn't do anything.. as always i'll stay quiet. that's not my house, i barely talk to people, even when i don't like when somebody plays under my nose while i'm cooking food for my self or playground in the kitchen.. when the kid was swinging the stick at me, didn't look at him.. the second time when he started swinging the stick at me from distance, i looked at him with angrily.. afterwards (5 minutes) he started crying.. now his dad thinks i'm suspicious or something.. asking odd questions
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Can someone help me join the Facebook group please I have sent a request over a month ago now and still haven't got accepted I have requested in two accounts jerry Rodriguez and Juan Cruz idk if maybe someone can message the admin and let them know please and thanks https://m.facebook.com/groups/OCDstarring/
Hey could you message the admin to accept my request please I sent a request over a month ago but nothing I sent it from a Juan Cruz and a Jerry Rodriguez account thank you..
godsbelovedson
New member
A CURE*
I myself suffer from this same habit and it has taking me a while to learn how to overcome this undesirable urge. I have tried different techniques like: constantly reminding myself as much as possible to not look at anyone when I am in public, but I realized that the mere thought of trying not look at people also causes me to look at people. I also live in New York City so it is even harder because there is a numerous of people around me most of the time. I even searched google with hopes to find a solution but I didn’t really find any help that I could use in my everyday life. I did notice that I’m not the only person dealing with this problem, which gives me comfort that I’m not a weirdo and I don’t feel as bad about this issue. Right now I am trying a new strategy that I came up with on my own, and it actually works for me. I am writing this because I want to share my success with others, so that maybe I can help someone else break away from this undesirable urge.
When I am around people now I just try my VERY HARDEST TO STARE AT ANYTHING THAT IS NOT CONSIDERED A PERSON. With all of my willpower I stare at anything except a person, I mean literally anything: the wall, the floor, a window, advertisements on the subway wall, sneakers, bugs, book bags, a dog or cat, a hat or literally anything else except people. I realized that people might notice me focusing on something because I can see them looking at me from the corner of my eye or maybe I think there just looking at me because I’m very subconscious and insecure that lol. But I’ve learned that majority of the time they look at me for a second and then casually look away, probably thinking I’m just minding my own business and that maybe they should do the same. I’m sure they don’t want to get caught staring too. One of my problems is that I am very conscious of how I look when I’m acting like I don’t notice people. I think they can see right through me and that they can tell I’m trying like HELL not to look at them. But the more I ignore people around me I’ve come to realize that people may believe that I’m fighting not to look at them but as long as i never do look at them, than eventually they will start believe that I’m not even thinking about them or maybe didn’t even notice them , and then they will probably start to become insecure and think they’re the ones looking and staring at me lol. The fact is people can’t read minds, although it is true some people are really good at reading people. But reading people isn’t enough for someone to fully make a judgement on you; it’s really just an assumption. If you never ever look at them then they are actually just assuming that you noticed them, and an assumption can be changed and proven wrong. They will than start to think to themselves “this person is not thinking about me, why I am all in this guy/girls face”. They may even start to think “I must be attracted to this person, because they’re not paying me any mind and I’m thinking about them.”
For those of you who suffer with this problem like me, I suggest you just try to accept the fact that people will start looking at you more. The moment you start ignoring people around you the more they will start looking because you will have this aura about you that will make you seem mysterious, and they won’t be able to put their finger on it (UNLESS OF COUSRSE YOU GIVE IN AND LOOK AT THEM)then they will probably realize that your just trying not look at them. As funny as it is, people will start to attract you and want to get to you know you because they will have this sense power coming from you. When really the vibe there getting from you is actually just you trying not look at them lol. So with ending this I want you to look at this uncontrollable desire as a gift and a curse. The gift being you will attract people the moment you start ignoring them completely and the curse being that you really wish you could look at people around but you just cannot. Don’t be afraid to ignore everyone one around you, (UNLESS OF COURSE YOU ARE SPEAKING TO THEM) and I promise you will start turn heads when you walk in a room. Everyone will want to know why they can’t stop looking at you or noticing you and what’s so mysterious about you. You will be like a magnet of attention. And the people around you will have to FIGHT WITH THE TEMPTATION THEMSELVES TO STOP FROM LOOKING AND STARING AT YOU LOL. Ironic isn’t it. Try this out, it really works for me and it help boost my self-esteem I hope this helps someone out there, remember never give up and take one at time. You may give in and look at one person every now and then but that doesn’t mean you will look at the next person that is around you.
I myself suffer from this same habit and it has taking me a while to learn how to overcome this undesirable urge. I have tried different techniques like: constantly reminding myself as much as possible to not look at anyone when I am in public, but I realized that the mere thought of trying not look at people also causes me to look at people. I also live in New York City so it is even harder because there is a numerous of people around me most of the time. I even searched google with hopes to find a solution but I didn’t really find any help that I could use in my everyday life. I did notice that I’m not the only person dealing with this problem, which gives me comfort that I’m not a weirdo and I don’t feel as bad about this issue. Right now I am trying a new strategy that I came up with on my own, and it actually works for me. I am writing this because I want to share my success with others, so that maybe I can help someone else break away from this undesirable urge.
When I am around people now I just try my VERY HARDEST TO STARE AT ANYTHING THAT IS NOT CONSIDERED A PERSON. With all of my willpower I stare at anything except a person, I mean literally anything: the wall, the floor, a window, advertisements on the subway wall, sneakers, bugs, book bags, a dog or cat, a hat or literally anything else except people. I realized that people might notice me focusing on something because I can see them looking at me from the corner of my eye or maybe I think there just looking at me because I’m very subconscious and insecure that lol. But I’ve learned that majority of the time they look at me for a second and then casually look away, probably thinking I’m just minding my own business and that maybe they should do the same. I’m sure they don’t want to get caught staring too. One of my problems is that I am very conscious of how I look when I’m acting like I don’t notice people. I think they can see right through me and that they can tell I’m trying like HELL not to look at them. But the more I ignore people around me I’ve come to realize that people may believe that I’m fighting not to look at them but as long as i never do look at them, than eventually they will start believe that I’m not even thinking about them or maybe didn’t even notice them , and then they will probably start to become insecure and think they’re the ones looking and staring at me lol. The fact is people can’t read minds, although it is true some people are really good at reading people. But reading people isn’t enough for someone to fully make a judgement on you; it’s really just an assumption. If you never ever look at them then they are actually just assuming that you noticed them, and an assumption can be changed and proven wrong. They will than start to think to themselves “this person is not thinking about me, why I am all in this guy/girls face”. They may even start to think “I must be attracted to this person, because they’re not paying me any mind and I’m thinking about them.”
For those of you who suffer with this problem like me, I suggest you just try to accept the fact that people will start looking at you more. The moment you start ignoring people around you the more they will start looking because you will have this aura about you that will make you seem mysterious, and they won’t be able to put their finger on it (UNLESS OF COUSRSE YOU GIVE IN AND LOOK AT THEM)then they will probably realize that your just trying not look at them. As funny as it is, people will start to attract you and want to get to you know you because they will have this sense power coming from you. When really the vibe there getting from you is actually just you trying not look at them lol. So with ending this I want you to look at this uncontrollable desire as a gift and a curse. The gift being you will attract people the moment you start ignoring them completely and the curse being that you really wish you could look at people around but you just cannot. Don’t be afraid to ignore everyone one around you, (UNLESS OF COURSE YOU ARE SPEAKING TO THEM) and I promise you will start turn heads when you walk in a room. Everyone will want to know why they can’t stop looking at you or noticing you and what’s so mysterious about you. You will be like a magnet of attention. And the people around you will have to FIGHT WITH THE TEMPTATION THEMSELVES TO STOP FROM LOOKING AND STARING AT YOU LOL. Ironic isn’t it. Try this out, it really works for me and it help boost my self-esteem I hope this helps someone out there, remember never give up and take one at time. You may give in and look at one person every now and then but that doesn’t mean you will look at the next person that is around you.