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- By Jeff Szymanski, Clinical Instructor in Psychology, Harvard Medical School
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My son was diagnosed with Aspergers Syndrome in August of 2008. Since then I have been on a mission to learn all that I can about this challenge he has. I really hate using the term disability because, in my opinion, he is just different – not disabled. There has been a lot of discussion lately about whether to do away with the term Aspergers Syndrome and just use the Autism diagnosis instead. There are pros and cons to both but I am leaning towards no.
Aspergers is considered by many as high functioning Autism although they are really very different. While they both fall on the Pervasive Development Disorder (PDD) scale, they have some vast differences. Typically, Autistic people do not want to socialize while Asperger’s (Aspies) do want to be social but they just don’t have social skills. One of the other differences in the language delay, those with Autism are typically delayed in developing language skills while Aspies are not.
PANDAS and autism is very common. My son has both. When we can get his PANDAS under control, his autism is almost nonexistant. He has been diagnosed with PDD-NOS, which is atypical autism. PANDAS antibodies can also attack other areas of the brain if the infection gets out of control. People need to be aware of this. Untreated strep would result in my son regressing further into autism. If you have looked into Saving Sammy, you’ll notice he stopped responding, like many autistics, and that some of his repetitive behaviors could be considered similar to stimming.
With my son, he also gets repetitive movements and OCD, but ADHD symptoms, major defiance and extreme outbursts, threats of violence, etc.
More doctors of autistic kids need to screen them for PANDAS.
Dr Syzmanski, I noted that your article, like the IOCD foundation’s article, failed to mention that children with autism get PANDAS/PANS. When children with autism, after the 12-24 month regression, are coming along well, making great gains, then regress again, and again- this is PANS. Practitioners are throwing our children out, claiming it’s just autism. Nothing oould be farther from the truth. Sue Swedo has even said children with autism are very likely to get PANDAS (now PANS). As you know, there is nothing in the DSM to excuse repeated regressions with the exact same symptoms of PANS by brushing it off as “just autism”. We need the experts to speak up on our behalf, because pediatricians and “tic” specialists are ignoring signs of PANS in our kids. Please give parents a hand by putting this in print.
Tics can be the primary symptom.
I’m a mother of 3 that tic.
Two are in remission.
One has had MANY episodes and a long time before a Dr would treat him. His is more chronic at this point.
my son had tubes in ears early on and is succeptible to allergies and was taking nasonex his doctors do not believe his ocd is panda related I have demanded the tests
My daughter was exhibited signs of OCD when he was 15 years old. She had a history of chronic sinus infections and ear infections. She was tested for the strep by the psychiatrist but nothing showed. I find it very interesting that other infectious organisms beside the strep cause the OCD. She is very allergic and I definitely believe that the OCD may very well be an autoimmune response to the many allergens she confronts and the many sinus/ear infections she endured which were treated with 500-775 mg of Augmentin. She has been taking 80 mg of Prozac daily for the past seven years. Her OCD is under control however she does have some anxiety issues. She is a college graduate and has a masters degree. She is employed at a reputable financial firm.
In July 2009 this is exactly….what happened to our daughter then age 8. Being an RN myself I quickly pushed and sought medical treatment. NO MD was willing to hear when I suggested this was PANDAS. i just thank GOD I pursued, threatening to travel to Mexico to obtain antibiotics. In short, she got the antibiotics but i felt like she need IVIG, so I then traveled to Chicago, Il to have this with Dr M Kovacevic, then 12/27/12 she had Tonsils and Adenioids removed which were filled with Pseudomonas. I pushed at that time to cover her with a combo antibiotic of Keflex 500mg qday (which she takes everyday) and Augmentin 500mg BID that is twice a day 10day prior surgery and 10 days after.
Today she is symptom free of PANDAS please feel free to contact me for any more info. I hve started a PANDAS network support group here in the Phoenix AZ area
Thanks for the info. My 6 year old son showed extreme OCD the week of Jan 23, 2012 Back in Aug he was tested for strep results were negative. I would like more info please contact me
I admire your persistence in helping your daughter and it is awesome that she is symptom free. Our son has been ill for two years with PANDAS; at first we did not know what was wrong. He stopped eating, drinking and swallowing because he was afraid he would choke. This happened when he was ill with a sinus infection and strep throat in February 2010. We have been to an eating disorder insitution, an ocd hospital, and have had his sinuses and adenoids removed, but he continues to struggle; his condition is very severe. We have begun to pursue experts in the field of PANDAS. If you have any information that would be helpful and would be willing to share that I would appreciate it. I hope that some day our son can be at least some what improved.
I too live in AZ and my 8 yr. old son was diagnosed with PANDAS almost a year ago. I don’t know anyone else out here who has a kid with PANDAS. I would like to join your support group. you can email me at email@example.com.
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