So you are saying that this problem arises due to excessive watching porn
Can't stop staring at people
- Thread starter John S
- Start date
So you are saying that this problem arises due to excessive watching porn
Mike555
Active member
Can be.. look. When ever you watch a porn video (Your brain releases Dopamine), when you watch too much and become addicted (takes very very long time and watching a a lot a lot) then you can have low amount of dopamine in your brain.. when you haw low amount, it can cause depression, not feeling alive, not social, no motivation and much more.. check this out and it maybe can lead to extreme things as well.. check this video
https://www.youtube.com/watch?v=wSF82AwSDiU
emptybench
Well-known member
wow, I knew a man who was like this. Everyday I saw him at the bus stop. At first I got anxious thinking it had to do with me, but then I noticed how he stared at everybody and then I got calmer. Don't be too anxious about it, just try to tell to the people you know what is happening and seek professional help.
Mike555
Active member
**** it, nothing worked, just worse.. i'm ****ed and lost.. this problem drives me crazy, totally nuts and i'm in the army, need extreme help! ****...... it's worse than social anxiety by a lot.. with s.a i could atleast sit in groups and do nothing but now i freak out sitting in bus station, bus, or around people. people freak out after me and move away and i fear effecting other people.. fear very badly.. i get shocked and trauma.
supersix
Active member
Hi. My heart really goes out to those who have posted about the sideways eye tic and other tic and anxiety disorder symptoms that you are experiencing. Everything you are talking about on this site, which I happened to stumble across, is not nearly as strange as you think - not to any doctor in the US who treats PANDAS and Tourettes syndromes. STREP, guys. You are dealing with brain/neurological consequences of an immunological problem usually triggered by strep, sometimes staph infections or viruses, but most often good ol' common strep that went untreated or undertreated bc your exposure was to an abx resistant form of the bacteria - perhaps you had just a sore throat or perhaps no sympotms whatsoever - you just woke up one day and STUFF was happening! It is called Rapid Onset OCD and TIC DISORDER and its onset is just that....VERY VERY rapid. Bam. They are still learning about this and studying this phenomena at NIH - the National Institute of Health in Washington DC - the big American Think Tank for all things Infectious Disease. Kudos to whoever was smart enough to put up this site. I just happened to stumble across it - well done! I think you are finally going to get the answers and the medical help you have been seeking....I hope so. Your sideways eye TIC is quite common and the intrusive thoughts are very very common STREP related problems. Things to google asap: PANDAS videos on You Tube. PANDAS NETWORK, the website that explains what happened to you and where this eye thing really comes from and what your treatment options are - here is a tidbit from the site:
The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. In some instances, the onset will be 4 to 6 months after a strep infection because the antibiotics did not fully eradicate the bacteria. Many pediatricians do not know the latent variability of strep – Rheumatologists and Streptococcal Experts do.
Recently, the NIMH has stated that where strep cannot be linked to the onset of symptoms, one should look into the possibility of PANS (Pediatric Acute-onset Neuropsychiatric Syndromes). No concrete treatment plan for this syndrome has been offered at this time by the NIMH but treatment plans similar to PANDAS should be attempted.
Translation - your brain and body had a strep bacteria EXPOSURE that triggered the symptoms that you are experiencing now. All or some of them....there is a spectrum of severity. Not everyone gets the tics, not everyone gets the OCD stuff, and only gets the panic attacks, and so on. In my family, one of my kids had terrible mood swings and TICS, like your eye one. Another child only had anxiety issues and then later developed some tics until she got on the right abx. the baby just had OCD with no tics. My son was the most severely impacted and he is still being treated by Dr.Trifilleti and may need an IVIG to ameliorate all his symptoms, but we are really hopeful for a full recovery and an end to all his tics and symptoms. I got OCD, intrusive thoughts, and some movements that I did not know were actually tics...all of it went away on zithromax and citalopram.
OKAY...so all you need to do is get a decent doctor in Europe who is willing to order the tests and follow the recommendations of Dr. Rosario Trifilleti in New York 201-236-3876,and you are going to be so much better within a few weeks. Another really useful site is webpediatrics.com for info on this disorder - I understand it has pediatric in the title, but it is not exclusively a pediatric issue - PANDAS/PANS/PITAND can happen at any age.
Many parents who have recovered their kids from autism/ocd/pandas issues here in the States know that this sideways glance/eye tic - its a TIC - goes away with proper biomedical intervention. I would contact Dr. Sletten in Los Angeles by e mail or phone if you are interested in any vitamins and other things that can help make the strictly medical appraoch even more effective. He is a DAN Dr as well as a medical MD who recovered his own child from autism and OCD. I think his own son had the side look tic, but certainly many of his patients and former patients are familiar with this particular symptom. In some cases vit A supplementation is hugely helpful...I would call his offices and see if he will answer some basic questions by phone or through an email Q and A consult. He is a great man and a wonderful MD.
Recently strep ripped through a high school in the US - Le Roy High and several students developed the tic you describe and several other tics OVERNIGHT. "experts" tried to say it was hysteria etc etc and arranged for psychological intervention for the girls and the school nurse who also had raid onset of anxiety and intrusive thoughts and other issues. Dr. Rosario Trifilleti ( the NY neurologist treating our family ) went to the school - HE IS A HERO - and informed the girls' families and the nurse that they were all suffering from PANDAS and/or dormant Lyme ignited by their exposure to the strep bacteria. The students that went on his protocol of abx and followed his recommedations ALL RECOVERED and graduated recently - no problems and totally normal now ( Matt Lauer of the Today Show covered this story, so you should be able to track it down via the internet. The families that did not listen to Trifilleti initially are listening NOW bc all the therapy and psychological this and that did NOTHING to shift their symptoms or bring them any relief....because this is about STREP, all you posters, really. YOu do not need psychiatrists, you need a decent family practice doctor with an open mind and or a good neurologist who is willing to implement Dr. Trifilleti's advice for your case. Each one of you will be fine. Its antibiotic resistant strep and it is a scary, but treatable phenomena. It does not have to ruin your lives anymore. You are not crazy, you had an exposure to a bacteria/illness that is not well understood that's all. A strep infection triggered your tics and ocd. I am a 43 yr old mom in VA, just outside Washington DC, and I know how freaked out you must be by whatever unique symptom the PANDAS is triggering in you...I've been there. After strep ping ponged through our house I started having involuntary arm movements and anxiety went attacks and intrusive thoughts...that went away on Dr. Trifilleti's protocol of zithromax and probiotics, and in my case an ssri called citalopram that initially worsened my symptoms, but then really helped unflip whatever switch that strep exposure flipped in my brain. None of my kids needed the ssri though - the zithromax and probiotics were sufficient. My son was the most impacted and he is still being treated by Trifilleti, but his symptoms were EXTREME. So he needs more than just the abx. You are mildly affected if your biggest worry is the sideways eye tic and some anxiety and intrusive thoughts....you are SO treatable. The zithromax protocol will probably suffice. My two year old's panic attacks and weird intrusive thoughts and OCD also went away on Trifilleti's abx protocol. She never had tics like the rest of us. Their dad had no symptoms AT ALL - nothing. Some people don't get hit withing thing, in the same room, the same family, in the same school....and they don;t know why yet. That part remains a mystery - why some of us get this, and others do not. It has to do with individual immune systems, but it does not change the fact that those of us who DO get hit...can be treated and get our lives back relatively quickly.
YOU DO NOT HAVE TO GET STREP TO GET PANDAS. It CAN happen when you are around others who have strep - strep causes Tourettes and OCD and the right medical interventions work, so take heart. I hope this helps you...let me know how you fare. It took a few months for everything to heal and go away....but we are doing great now. Good luck. Diane Early’’
July 5, 2012 20:47
Laura writes:
‘‘
Wow! I`m so glad I found this website. I`m 25 now and have been dealing with this weird eye contact issue for nearly a year now..I`ve always been quite shy, blushing, trembling during public speaking etc, but for some reason I was always good at maintaining eye contact..I think It was a break up that triggered what im going through now though. It ended with the other person saying they didn’t love me anymore, a real confidence knocker so I guess this is where it all started…
I`m travelling/ working overseas at the moment and feel like I can`t go home until I get over this. Id probably freak my parents and friends out!
It happens all the all time- where I`m talking to someone and my eyes wander. What makes it worse is that I know it makes the other person feel uncomfortable and sometimes they look down to see if they havnt closed a button or zip! I`ve tried a few different techniques- which usually involve having something in my hand- a mobile phone or cup of tea.. Pretending i`m deep in thought on what they are saying by starring into space and nodding! Lately it has got worse so Ive been spending nearly all my time outside work alone and when I do meet up with people I usually make an excuse and leave early.
I really need to get over this…
Lets come up with some ideas!!! ((collected))
The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. In some instances, the onset will be 4 to 6 months after a strep infection because the antibiotics did not fully eradicate the bacteria. Many pediatricians do not know the latent variability of strep – Rheumatologists and Streptococcal Experts do.
Recently, the NIMH has stated that where strep cannot be linked to the onset of symptoms, one should look into the possibility of PANS (Pediatric Acute-onset Neuropsychiatric Syndromes). No concrete treatment plan for this syndrome has been offered at this time by the NIMH but treatment plans similar to PANDAS should be attempted.
Translation - your brain and body had a strep bacteria EXPOSURE that triggered the symptoms that you are experiencing now. All or some of them....there is a spectrum of severity. Not everyone gets the tics, not everyone gets the OCD stuff, and only gets the panic attacks, and so on. In my family, one of my kids had terrible mood swings and TICS, like your eye one. Another child only had anxiety issues and then later developed some tics until she got on the right abx. the baby just had OCD with no tics. My son was the most severely impacted and he is still being treated by Dr.Trifilleti and may need an IVIG to ameliorate all his symptoms, but we are really hopeful for a full recovery and an end to all his tics and symptoms. I got OCD, intrusive thoughts, and some movements that I did not know were actually tics...all of it went away on zithromax and citalopram.
OKAY...so all you need to do is get a decent doctor in Europe who is willing to order the tests and follow the recommendations of Dr. Rosario Trifilleti in New York 201-236-3876,and you are going to be so much better within a few weeks. Another really useful site is webpediatrics.com for info on this disorder - I understand it has pediatric in the title, but it is not exclusively a pediatric issue - PANDAS/PANS/PITAND can happen at any age.
Many parents who have recovered their kids from autism/ocd/pandas issues here in the States know that this sideways glance/eye tic - its a TIC - goes away with proper biomedical intervention. I would contact Dr. Sletten in Los Angeles by e mail or phone if you are interested in any vitamins and other things that can help make the strictly medical appraoch even more effective. He is a DAN Dr as well as a medical MD who recovered his own child from autism and OCD. I think his own son had the side look tic, but certainly many of his patients and former patients are familiar with this particular symptom. In some cases vit A supplementation is hugely helpful...I would call his offices and see if he will answer some basic questions by phone or through an email Q and A consult. He is a great man and a wonderful MD.
Recently strep ripped through a high school in the US - Le Roy High and several students developed the tic you describe and several other tics OVERNIGHT. "experts" tried to say it was hysteria etc etc and arranged for psychological intervention for the girls and the school nurse who also had raid onset of anxiety and intrusive thoughts and other issues. Dr. Rosario Trifilleti ( the NY neurologist treating our family ) went to the school - HE IS A HERO - and informed the girls' families and the nurse that they were all suffering from PANDAS and/or dormant Lyme ignited by their exposure to the strep bacteria. The students that went on his protocol of abx and followed his recommedations ALL RECOVERED and graduated recently - no problems and totally normal now ( Matt Lauer of the Today Show covered this story, so you should be able to track it down via the internet. The families that did not listen to Trifilleti initially are listening NOW bc all the therapy and psychological this and that did NOTHING to shift their symptoms or bring them any relief....because this is about STREP, all you posters, really. YOu do not need psychiatrists, you need a decent family practice doctor with an open mind and or a good neurologist who is willing to implement Dr. Trifilleti's advice for your case. Each one of you will be fine. Its antibiotic resistant strep and it is a scary, but treatable phenomena. It does not have to ruin your lives anymore. You are not crazy, you had an exposure to a bacteria/illness that is not well understood that's all. A strep infection triggered your tics and ocd. I am a 43 yr old mom in VA, just outside Washington DC, and I know how freaked out you must be by whatever unique symptom the PANDAS is triggering in you...I've been there. After strep ping ponged through our house I started having involuntary arm movements and anxiety went attacks and intrusive thoughts...that went away on Dr. Trifilleti's protocol of zithromax and probiotics, and in my case an ssri called citalopram that initially worsened my symptoms, but then really helped unflip whatever switch that strep exposure flipped in my brain. None of my kids needed the ssri though - the zithromax and probiotics were sufficient. My son was the most impacted and he is still being treated by Trifilleti, but his symptoms were EXTREME. So he needs more than just the abx. You are mildly affected if your biggest worry is the sideways eye tic and some anxiety and intrusive thoughts....you are SO treatable. The zithromax protocol will probably suffice. My two year old's panic attacks and weird intrusive thoughts and OCD also went away on Trifilleti's abx protocol. She never had tics like the rest of us. Their dad had no symptoms AT ALL - nothing. Some people don't get hit withing thing, in the same room, the same family, in the same school....and they don;t know why yet. That part remains a mystery - why some of us get this, and others do not. It has to do with individual immune systems, but it does not change the fact that those of us who DO get hit...can be treated and get our lives back relatively quickly.
YOU DO NOT HAVE TO GET STREP TO GET PANDAS. It CAN happen when you are around others who have strep - strep causes Tourettes and OCD and the right medical interventions work, so take heart. I hope this helps you...let me know how you fare. It took a few months for everything to heal and go away....but we are doing great now. Good luck. Diane Early’’
July 5, 2012 20:47
Laura writes:
‘‘
Wow! I`m so glad I found this website. I`m 25 now and have been dealing with this weird eye contact issue for nearly a year now..I`ve always been quite shy, blushing, trembling during public speaking etc, but for some reason I was always good at maintaining eye contact..I think It was a break up that triggered what im going through now though. It ended with the other person saying they didn’t love me anymore, a real confidence knocker so I guess this is where it all started…
I`m travelling/ working overseas at the moment and feel like I can`t go home until I get over this. Id probably freak my parents and friends out!
It happens all the all time- where I`m talking to someone and my eyes wander. What makes it worse is that I know it makes the other person feel uncomfortable and sometimes they look down to see if they havnt closed a button or zip! I`ve tried a few different techniques- which usually involve having something in my hand- a mobile phone or cup of tea.. Pretending i`m deep in thought on what they are saying by starring into space and nodding! Lately it has got worse so Ive been spending nearly all my time outside work alone and when I do meet up with people I usually make an excuse and leave early.
I really need to get over this…
Lets come up with some ideas!!! ((collected))
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supersix
Active member
read as much as you can regarding pandas. read articles written by Jory F. Goodman on psychology today. read all the comments there. i found them very helpful. find a doctor who have knowledge about pandas. do all the medical strep test and also test for other viral infection. recently i have tested mine after knowing about pandas. my test result came positive. i have suffered almost three years. just dont wait. go and see a doctor as early possible.. panda is a kind of rear disease. if the doctor dont know about the panda show him the articles. i believe it can be cured with proper biomedication.
Mike555
Active member
holy shit i just went to the clinic.. i went out of the house was so ****ing nervous, i saw people stare at me.. probably i was red, walked fast and was extremely nervous. i think i also made other people nervous with my nervous moves...
I got inside the clinic.. saw bunch of people sitting there.. i was like wow wtf.. there was a girl looked at me, i think she liked me or something with how i look and she started being nervous or it's because of me i was extremely nervous (got shocked even - like dizzy mode) and then she started being nervous! i tried reading something but i constantly moved (nervous moves) and it made other people nervous too WTF! IF i had no OCD problem, i stood up and walked home. I would've sat! but with OCD I CAN'T GO EVEN! WTF IN THE HELL! BTW it was a meeting to the family doctor and he had to arrange meeting with a psycholog through the family doc........ OH my god.. i will go in 2 days earliest in the morning.. hope noone will be there!!!!! I'm currently shocked from what happened, i feel even dizzy and i can't talk.... i have ****ing Schizoid personality disorder which makes everything way way worse!!!!!!!! OH GOD!!!!!!! when i walked, it was so paranoied, i thought someone will even kill me wtf! paranioa! with my paranioa i cause other to be paranoied too! it's the worst feeling on earth. it literally feels like hell! like burning or something mentally
I got inside the clinic.. saw bunch of people sitting there.. i was like wow wtf.. there was a girl looked at me, i think she liked me or something with how i look and she started being nervous or it's because of me i was extremely nervous (got shocked even - like dizzy mode) and then she started being nervous! i tried reading something but i constantly moved (nervous moves) and it made other people nervous too WTF! IF i had no OCD problem, i stood up and walked home. I would've sat! but with OCD I CAN'T GO EVEN! WTF IN THE HELL! BTW it was a meeting to the family doctor and he had to arrange meeting with a psycholog through the family doc........ OH my god.. i will go in 2 days earliest in the morning.. hope noone will be there!!!!! I'm currently shocked from what happened, i feel even dizzy and i can't talk.... i have ****ing Schizoid personality disorder which makes everything way way worse!!!!!!!! OH GOD!!!!!!! when i walked, it was so paranoied, i thought someone will even kill me wtf! paranioa! with my paranioa i cause other to be paranoied too! it's the worst feeling on earth. it literally feels like hell! like burning or something mentally
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Today, i feel good, i understand my lecture in class but i only understand becoz my teacher don't look at me. When he look at me his eyes attarcts my attention and again that sucks. When i went to home by bus and when i try to look out of window my parifiral vision look other person who is sitting behind me and he/she got nervous. I try to look at my mobile so that other don't get nervous.
dead24
Well-known member
Hey man your not alone. We are the same. I go through the same problem everyday. I just quit my job last August just because of this f**king ocd peripheral staring. And I agree with you it is WAAAAAAAAAY worse than s.a. At least with social anxiety you can be quiet and calm with people around but with staring all I can do is stare at my phone so I won't make people uncomfortable.
supersix
Active member
My son was diagnosed at age 19 with PANDAS and Chronic LYME disease during his first semester of college by Dr. Schweig and Amy Smith, NP at Hill Park Medical Center in Petaluma after a two year search to find out what had happened to him. Collected
At the beginning of my talk, I asked for a show of hands for how many parents have children who were diagnosed over the age of 18. Only 3 hands were raised. Including myself, that made 4 children over 18 represented. I left thinking how many of the parents of children who likely should have been diagnosed with PANDAS/PANs were sitting in a similar support group but at a psychiatric symposium.
PRESENTATION OF PANDAS/PANS:
TEENAGE BEHAVIOR OR ILLNESS?
This is one of the unique problems facing parents of teens and young adults who suddenly, overnight have a personality transplant. Suddenly, they are exhibiting odd physical gestures (choreic upper body movements), odd habits (OCD) and they begin disappearing into their own world...not quite autism, not quite Parkinson's.,not quite depression, bipolar, or any other of the DSM IV diagnostic codes.
We were confounded by the difficulties of determining how much of what we were seeing was typical developmental “teenage” behavior or something else for which we were completely unprepared.
It seems that in most children, PANDAS presents with a certain set of behavioral changes many of which were discussed by the previous presenters (OCD). However in a teen or young adult, there are many other behavioral, mental and emotional changes that are difficult to attribute to an illness and are often part of the normal teenage development:
withdrawal/ unwillingness to talk about how he is feeling -procrastination/slowness
difficulty making decisions
irritability
anxiety
age regression
disorganization (executive function)
loss of confidence in self -eating habits change...picking at food.
However, these other changes also seemed to be extreme and sudden. Was it hormones, fear/ anxiety surrounding the college process, social pressures? OR Was it related to the sudden onset of the OCD and odd body gesturing?
As a mother (or parent), you know something is wrong, very wrong and you know it is not any of the things you hear along the way of trying to figure out what is happening to your child. Professionals and friends tell you all kinds of things that you canʼt believe. Since your child is a teen, they reach for the obvious...that your son is doing drugs, or that this is the “natural” age that mental illness presents...accept it and get him medicated....or he must be having a nervous breakdown...or later, once I suspected PANDAS, I often heard that it canʼt be PANDAS because the P is for pediatric.
HIPAA: NOT OUR ALLY
Like so many of you, I honored my gut instincts and I started doing my own research. I started with what I knew and called a colleague who practiced Chiropractic Neurology to assess my son. He found that his basal ganglia was out of synch. He didnʼt know why this had occurred and gave him brain exercises to rebalance this part of his brain. He described the functions of the basal ganglia and it matched many of the areas where my son was having sudden difficulties including handwriting...further complicating his days at school and his ability to learn. A counselor at his high school told us that he had apparently developed learning disabilities in his junior year of high school and he should be tested.
So, I spent night after night on my computer. I agree with Diana Pohlman. Where would we be today in our understanding of PANDAS without the internet? Finally, in utter frustration, I typed in “what causes sudden overnight OCD...?”. While I was sifting through the many research articles, I noticed a pop up of Beth Maloneyʼs book Saving Sammy which included the subtitle Curing the Boy Who “CAUGHT” OCD! That was it...that was what I was trying to describe to everyone.
After devouring her book and learning that PANDAS affects the basal ganglia, I knew I had found a potential answer...but I found that no medical professional would talk to me because my son was over 18 and he was protected by HIPAA (The Health Information Privacy and Accountability Act). They would only share their assessment of him with me if he would sign a permission form-- highly unlikely given the state of his mind at this time. HIPAA was actually preventing me from helping him.
My son then 18 1/2 had previously been an independent young man who knew what he wanted. Suddenly, he couldnʼt make even the smallest of decisions; moved rather slowly through the his life (“pathologic slowness”, I would later learn is a form of OCD); and he stopped talking not only to us, but in public too. Given the high level of brain inflammation that was later revealed through diagnostic testing, it was no wonder that at the time, he had incredible difficulty making any decisions at all. He withdrew from his friends and isolated himself from his previous life. At the exact time he expected to be 2 even more independent from us, he was withdrawn, depressed, confused, lost his confidence to move about the world and didnʼt have a clue what was happening to him. He would not agree to go to any doctor and instead wanted us to accept him for who he was becoming. He later said he was scared, confused and afraid to talk to about it.
It was not until I spoke with Amy that I knew I had finally found an ally. She told me that this did in fact sound like PANDAS and that it was a family issue now. We would be present at the the first and following appointments to provide information, feedback and help monitor our sonʼs progress. He did not have to face doctor appointments alone and doctors would not have to rely on his inability to talk about what he was experiencing. Finally, our son and family could begin the process of healing.
BALANCING INDEPENDENCE WITH PARENTAL INVOLVEMENT
By now, our son was living an hour away at college which presented another set of unique problems. It was difficult to monitor his compliance with taking the medications and observe if the medications were working. It was equally difficult to balance my sonʼs need to have independence over his medical regime and our need to monitor how much progress he was making and when we might need to try something else. Were we seeing the waxing and waning of the illness or were we seeing the waxing and waning of his compliance with taking the medications?
Fortunately, as the medications and supplements began to work, and now 10 months after IVIG, we have resumed a new balance where he is able to talk with some ease about his experience. He is more open to talking about the times he missed taking his medications and the effect it has on him. In other words, he is now able to be a willing participant in his own care.
AGE REGRESSION AND EXPECTATIONS FOR AN OLDER CHILD
Age regression is a documented aspect of PANDAS and has been a very distressing part of the illness for all of us. It has been difficult to balance the issues of developmental age regression and the expectations you have for an older child. PANDAS mainly affects just one small part of the brain so while we see developmental regression in some areas, we also see some areas of very age appropriate behaviors. We see times when there is a high level of maturity and intelligence and times when you drop into despair. Just when you think he has progresses 6 steps ahead....itʼs 4 steps back. I have learned to be more flexible in my expectations as he waxes and wanes on his course through healing. He too had to learn during these regressive times that it was his “infection” operating and it didnʼt define him entirely.
I should mention that we have a second son 9 years younger. While much of this journey has been very difficult on him, it has also provided both of them with an ironic opportunity to grow closer. ..the only upside to the age regression.
SCHOOL ACCOMMODATIONS
Our son began college before he was diagnosed, so there was no time for a 504 plan to be put into place. Once again, HIPAA came into play but by this time, my son was willing to sign off on the appropriate forms and allow us to communicate with the Disability Services Department at his school.
It was necessary to educate them about PANDAS and what supports he would need at school. Guided by our very own Jamie Candelaria-Green, we described the situation and what he needed as if he had broken his leg. He would heal but he needed a cast and crutches and would have to use the elevator, not the escalator to get to classes. This they understood and were willing to provide the following accommodations and supports:
He would need notetakers in each of his classes (writing was still hard for ! him and he couldnʼt listen to the lectures and type at the same time.)
He would need extra time to tests.
He would need to take exams either orally or on a computer.
With these in place, I am happy to say that he went from a semester of barely earning Cs and Ds to earning Aʼs and Bs.
It has now been a little over a year since his diagnosis and treatment began. I am happy to say that he is at his own assessment 75% improved. He is more independent and engaged in his life than he has been in 3 years. He may have missed the last teenage years of his life but he doesnʼt plan on missing his young adulthood. It has been a difficult journey and we as a family are more committed than ever to having PANDAS diagnosed and treated quickly.
Thank you. Ann (collected)
At the beginning of my talk, I asked for a show of hands for how many parents have children who were diagnosed over the age of 18. Only 3 hands were raised. Including myself, that made 4 children over 18 represented. I left thinking how many of the parents of children who likely should have been diagnosed with PANDAS/PANs were sitting in a similar support group but at a psychiatric symposium.
PRESENTATION OF PANDAS/PANS:
TEENAGE BEHAVIOR OR ILLNESS?
This is one of the unique problems facing parents of teens and young adults who suddenly, overnight have a personality transplant. Suddenly, they are exhibiting odd physical gestures (choreic upper body movements), odd habits (OCD) and they begin disappearing into their own world...not quite autism, not quite Parkinson's.,not quite depression, bipolar, or any other of the DSM IV diagnostic codes.
We were confounded by the difficulties of determining how much of what we were seeing was typical developmental “teenage” behavior or something else for which we were completely unprepared.
It seems that in most children, PANDAS presents with a certain set of behavioral changes many of which were discussed by the previous presenters (OCD). However in a teen or young adult, there are many other behavioral, mental and emotional changes that are difficult to attribute to an illness and are often part of the normal teenage development:
withdrawal/ unwillingness to talk about how he is feeling -procrastination/slowness
difficulty making decisions
irritability
anxiety
age regression
disorganization (executive function)
loss of confidence in self -eating habits change...picking at food.
However, these other changes also seemed to be extreme and sudden. Was it hormones, fear/ anxiety surrounding the college process, social pressures? OR Was it related to the sudden onset of the OCD and odd body gesturing?
As a mother (or parent), you know something is wrong, very wrong and you know it is not any of the things you hear along the way of trying to figure out what is happening to your child. Professionals and friends tell you all kinds of things that you canʼt believe. Since your child is a teen, they reach for the obvious...that your son is doing drugs, or that this is the “natural” age that mental illness presents...accept it and get him medicated....or he must be having a nervous breakdown...or later, once I suspected PANDAS, I often heard that it canʼt be PANDAS because the P is for pediatric.
HIPAA: NOT OUR ALLY
Like so many of you, I honored my gut instincts and I started doing my own research. I started with what I knew and called a colleague who practiced Chiropractic Neurology to assess my son. He found that his basal ganglia was out of synch. He didnʼt know why this had occurred and gave him brain exercises to rebalance this part of his brain. He described the functions of the basal ganglia and it matched many of the areas where my son was having sudden difficulties including handwriting...further complicating his days at school and his ability to learn. A counselor at his high school told us that he had apparently developed learning disabilities in his junior year of high school and he should be tested.
So, I spent night after night on my computer. I agree with Diana Pohlman. Where would we be today in our understanding of PANDAS without the internet? Finally, in utter frustration, I typed in “what causes sudden overnight OCD...?”. While I was sifting through the many research articles, I noticed a pop up of Beth Maloneyʼs book Saving Sammy which included the subtitle Curing the Boy Who “CAUGHT” OCD! That was it...that was what I was trying to describe to everyone.
After devouring her book and learning that PANDAS affects the basal ganglia, I knew I had found a potential answer...but I found that no medical professional would talk to me because my son was over 18 and he was protected by HIPAA (The Health Information Privacy and Accountability Act). They would only share their assessment of him with me if he would sign a permission form-- highly unlikely given the state of his mind at this time. HIPAA was actually preventing me from helping him.
My son then 18 1/2 had previously been an independent young man who knew what he wanted. Suddenly, he couldnʼt make even the smallest of decisions; moved rather slowly through the his life (“pathologic slowness”, I would later learn is a form of OCD); and he stopped talking not only to us, but in public too. Given the high level of brain inflammation that was later revealed through diagnostic testing, it was no wonder that at the time, he had incredible difficulty making any decisions at all. He withdrew from his friends and isolated himself from his previous life. At the exact time he expected to be 2 even more independent from us, he was withdrawn, depressed, confused, lost his confidence to move about the world and didnʼt have a clue what was happening to him. He would not agree to go to any doctor and instead wanted us to accept him for who he was becoming. He later said he was scared, confused and afraid to talk to about it.
It was not until I spoke with Amy that I knew I had finally found an ally. She told me that this did in fact sound like PANDAS and that it was a family issue now. We would be present at the the first and following appointments to provide information, feedback and help monitor our sonʼs progress. He did not have to face doctor appointments alone and doctors would not have to rely on his inability to talk about what he was experiencing. Finally, our son and family could begin the process of healing.
BALANCING INDEPENDENCE WITH PARENTAL INVOLVEMENT
By now, our son was living an hour away at college which presented another set of unique problems. It was difficult to monitor his compliance with taking the medications and observe if the medications were working. It was equally difficult to balance my sonʼs need to have independence over his medical regime and our need to monitor how much progress he was making and when we might need to try something else. Were we seeing the waxing and waning of the illness or were we seeing the waxing and waning of his compliance with taking the medications?
Fortunately, as the medications and supplements began to work, and now 10 months after IVIG, we have resumed a new balance where he is able to talk with some ease about his experience. He is more open to talking about the times he missed taking his medications and the effect it has on him. In other words, he is now able to be a willing participant in his own care.
AGE REGRESSION AND EXPECTATIONS FOR AN OLDER CHILD
Age regression is a documented aspect of PANDAS and has been a very distressing part of the illness for all of us. It has been difficult to balance the issues of developmental age regression and the expectations you have for an older child. PANDAS mainly affects just one small part of the brain so while we see developmental regression in some areas, we also see some areas of very age appropriate behaviors. We see times when there is a high level of maturity and intelligence and times when you drop into despair. Just when you think he has progresses 6 steps ahead....itʼs 4 steps back. I have learned to be more flexible in my expectations as he waxes and wanes on his course through healing. He too had to learn during these regressive times that it was his “infection” operating and it didnʼt define him entirely.
I should mention that we have a second son 9 years younger. While much of this journey has been very difficult on him, it has also provided both of them with an ironic opportunity to grow closer. ..the only upside to the age regression.
SCHOOL ACCOMMODATIONS
Our son began college before he was diagnosed, so there was no time for a 504 plan to be put into place. Once again, HIPAA came into play but by this time, my son was willing to sign off on the appropriate forms and allow us to communicate with the Disability Services Department at his school.
It was necessary to educate them about PANDAS and what supports he would need at school. Guided by our very own Jamie Candelaria-Green, we described the situation and what he needed as if he had broken his leg. He would heal but he needed a cast and crutches and would have to use the elevator, not the escalator to get to classes. This they understood and were willing to provide the following accommodations and supports:
He would need notetakers in each of his classes (writing was still hard for ! him and he couldnʼt listen to the lectures and type at the same time.)
He would need extra time to tests.
He would need to take exams either orally or on a computer.
With these in place, I am happy to say that he went from a semester of barely earning Cs and Ds to earning Aʼs and Bs.
It has now been a little over a year since his diagnosis and treatment began. I am happy to say that he is at his own assessment 75% improved. He is more independent and engaged in his life than he has been in 3 years. He may have missed the last teenage years of his life but he doesnʼt plan on missing his young adulthood. It has been a difficult journey and we as a family are more committed than ever to having PANDAS diagnosed and treated quickly.
Thank you. Ann (collected)
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Mike555
Active member
Yeah lol it sucks so badly.. especially when i have 1 hour drive and my neck starts hurting because of looking down all the time or looking at 1 direction and i can't look the other way because of peripheral vision and other people easily detect it as you're watching at them. freaking hell!
Yeah me too i'm at home now and i feel like i'm gonna die, i'm in constant anxiety and i have light-head everyday + dizziness, i can't even get out of my house, i really don't want people i knew in the past and good friends to see me in that state. they were cool with me before but now they will be shocked to see me that way.. i have freaking shcizoid, ADHD, ocd starring, severe social anxiety, fear of effecting other people and paranoia.. i feel like hunted.... wtf it's so crazy.. seriously it feels like my time's up and i'm gonna die. i think i have low amount of dopamine in my brain due to some addiction.. not drug addiction though but this thing https://www.youtube.com/watch?v=wSF82AwSDiU
IDK what to do, i don't have energy for anything, my world feels like color-less, no taste, i don't enjoy anything, i don't enjoy things i used to in the past like camping.. i can't socialize.. i have dizziness, i effect other with tons of problems by making other people freak out or extremely nervous lol..
supersix
Active member
i am taking antibiotics and ssri. Already having some good result. its more like an sensory disorder(sensitive to human body) than OCD. i believe the constant nervousness or anxiety is created by those antibodies which attacking the basal ganglia and creating false alarm.
Mike555
Active member
will do! i also heard 2 or 1 guys from yahoo answers who had this problem and it disappeared almost ! well, i will try it too, i have an appointment in November 3, 2014 to the psychiater and will ask for medication as well.
I don't know i have 'panda' or not but i know that i m so unlucky. I think i m alone who have this problem in my collage and also in my hometown. From the childhood i always feel different, i always feel humilate and weak due to my cast(even there not so strict cast system) and now i become different. And i start to watch porn when i m 9years old due to bad company. I can't concentrate even for 1 minute in study. And now i m so sensitive to sounds like car horn, doors shut down. This problem i really destroying my life.
supersix
Active member
Watching porn is not a bad thing. If you felt different from that age did you you ever tell your parent that you feel awkard? Depression is one of the key symptom of pandas and it always started from early age like your age. Also not every body get the pandas. Genes and stress are the key factor of occuring panda. There is a thing called BLOOD BRAIN BARRIER. it protects your brain from enetring unnecessery thing from the blood. it is made by endotheleial tissue. you can google it. if a person undergo so much pressure then the Blood BRAIN BArreir gets broken or weakend. and its gets broken and weakend all shorts of bacteria, virus, antibodies get the chance to enter your brain and they start damaging theings and you get all shots of mental illness. so its quiete important to taking care of blood brain barrier.The most saddest thing about pandas thought gets stuck in the head and it doesn't happen to everybody. In my case I never knew I also have other form of ocd before I met with my doc. I always had repeated thoughts in my head mostly religious and never considered this thing as a form of disorder and yes also lived a very stressful life with kind of distorted self image where my religion and social rules played a big part of creating these. I still can remember the day when it started. It started three years ago. I had issues but I was outgoing and kind of extrovert guy. The other day I had passed a stressful day and went to bed but the next day I woke up with extreme panic and was unable to go to next room let alone looking at someone because of extreme anxiety. From that day my hellish life began and I started my journey for finding an answer. I was extremely terrified to go to college couldn't even go outside for months. One thing you will notice if you loosen up your control from your eyes it will start dialating its mean the will keep moving all by itself and stop its movement. It is called eye dialating which is also one of the symptom of panda. I have changed myself a lot. I changed my religious belief. You can put me on new agey group. I am more spiritual and less religious. I changed my societies projected shamful belief system. I no longer feel guilt or shametul if watch porn and no longer consider nudity and sex as a bad thing and stop holding taboo beliefs about them. I am less sensitive on gender issues and more open to accepting new ideas. I removed the whole idea of sin whole heartedly from my head. I am less judgemental and I am more open to peace now. Even now I have to change a lot. I can see from here now that I was always prone to have tgis kind of from my childhood but now atleast I can breath peacefully.
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