PANDAS resources
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What is PANDAS? "PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever." Read more at the source: http://intramural.nimh.nih.gov/pdn/web.htm Background: Your doctor might not be aware of PANDAS or might not accept it's validity. Why not? It's rare: PANDAS is considered a "rare disease" by the Office of Rare Disease at the National Institute of Health. By definition, a rare disease affects less than 200,000 Americans. It's new: I get the impression that the first article on it was published in 1998. The National Institute of Health (NIH) is behind both the coining and most of the research. PANDAS isn't in the diagnostic manuals yet, so if a doctor was willing to diagnose it, they couldn't code it for insurance purposes etc. At this point it is just considered a "hypothesis". (Remember: there has also been a hypothesis that autism is an auto-immune disease, a hypothesis that first turned up in the 1950s and there's still no proof). Treatment: The research is still out on possible treatments. So it looks like the best you can do is to identify and treat strep infections as early as possible as a preventative measure. (See next post for more treatment information). Links: http://www.neurodiversity.com/pandas.html - various links http://pediatrics.aappublications.org/cgi/content/full/113/4 /883?ijkey=1d10ce14095f5b41c19a170765ed7e7846b5abf9 - an overview written for physicians in the medical journal Pediatrics. http://www.medscape.com/viewarticle/445217 - article "PANDAS in Children: Current Approaches" by Richard P. Barthel, MD. Gives an example of how a patient could be followed up (including testing other family members to see if anybody could be an asymptomatic strep carrier that keeps re-infecting the child). The article is member-restricted, but you can access it by googling I was able to access it by googling the title. http://www.adhd.com.au/PANDAS.htm - reader-friendly article. Mentions that if you suspect PANDAS but didn't get a throat culture in time, you can check for a recent strep infection by doing a "streptococcus serology (ASOT or AntiDNAse-B)." Any other resources or experiences to share? Dr. Miroslav Kovacevic is a Board certified Pediatrician in the Chicagoland area, with 30 years of experience. He has a very strong interest in autism and PANDAS and other neuropsychiatric disorders in children. His webpage includes: http://www.webpediatrics.com/pandas.html - basic information about PANDAS and a review of currently available treatments http://www.webpediatrics.com/pandasclinicalcases.html - 4 case histories and conclusions based on his clinical practice http://www.webpediatrics.com/ivig.html - more info on IVIG, which is his preferred treatment (specifically Gamunex from Bayer). I'm always so worried about strep, and go back and forth on whether we should go to the doctor or not, but I finally got a good answer on what to look for. American websites always seem so vague and say only the doctor can tell. While that is true, at least a Norwegian site I found had some helpful hints. The most helpful bit was learning that if you have a runny nose, cough, hoarseness or runny eyes, it's probably NOT strep. The other helpful point was that if the fever is/has been 101 or up, it probably IS strep. Here's a translation of the whole section: If you have a sore throat and it's hard to swallow, it is probably because of strep if: - Tonsils are red and swollen with white patches (comment from NorwayMom: like we have a chance in heck of looking in their throats). - You have a fever over 101.3 degrees fahrenheit (38.5 celsius). - You have swollen and tender lymph nodes in your throat - You do NOT have a cough or runny nose. It is probably just a virus if 2 or more of the following criteria apply: - You have a runny nose, cough, hoarseness or runny eyes. - You have a normal or slightly elevated temperature. - Your tonsils don't have white patches. - The back of your throat is red. Thanks Norway! I want you to move in with me:) Just wanted to add since some of our kids dont run fevers like mine and she is being treated for Strep throat right now ..she had real big swollen glands under jawline and white patches on throat~this was a feat to witness personally but they were there:) No cough..a little runny nose but she has allergies...her throat also was not sore enough to prevent her from eating doritos so I am thinking with "our " kiddos we are going to have to be super diligent in looking for strep...the only way I knew something was not right was because she had a rash on her legs, and trunk which I thought I better take her to the doc to find out if she was allergic to something....which after some tests (throat & urine) she was diagnosed with Scarlet Fever...I was flabbergasted! Live & learn:) In addition to PANDAS, there's something called PITAND. Scroll down on this link:http://www.webpediatrics.com/pandas.html |
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