Update 1/27/11: Another link with PANDAS IVIG trial information and details, including the medication and dose.
 
For Email Newsletters you can trust
Case information is optional
Contact us at:
PANDASnetwork@gmail.com
 |
28 comments to Yale-NIH Details on PANDAS IVIG Clinical Treatment Study |
||
|
Copyright © 2013 PANDAS Network - All Rights Reserved -
We are not physicians and do not give medical advice. We share with you anecdotal evidence only for a more accurate clinical diagnosis of PANDAS and tentative medical treatments that have worked for our young children. |
|||
Just learned of PANDAS when looking up strep info. My son is 10 yrs old and has had his share of strep…some episodes with obvious severe symptoms but numerous times very asymptomatic with no fever, just slight sore throat & generally under weather. Most of those times the doctor said he’s fine but I insisted on rapid strep and yes he was positive. I wonder if strep went by under the radar other times. He is very argumentative and trouble focusing on homework, seems to have some OCD. With a recent bout of strep, it was like someone flipped a switch – on amoxicillan my son was calm, focused, polite, agreeable 24/7. The treatment was 10 days. He is usually this way when he feels really sick with fever and I joke that he doesn’t have the energy to argue with me. His calmness, focus etc lasted for at least 2 1/2 weeks. He then came down with another bout of strep within a week of last amoxicillan dose and was put on Keflex for 10 days. His usual oppositional behaviour returned duringt the end of the second treatment. Does this sound like it could be PANDAS?
Lee, we cannot give an opinion if a child is possible PANDAS. In regards to your question, a child can have bouts of strep with the parent never knowing it. Also, some articles have cited that perhaps kids have different thresholds for when the PANDAS reaction may finally happen. The fact that your child’s symptoms improve with antibiotics, leads me to highly suggest you see a physician that is familiar with PANDAS.
I’m a little disappointed that the age requirement of the study does not include up to 13 or 14..should just be pre-puberty…my son is 13 and no signs of puberty yet. This excludes him based on age and not on development.
Through biological intervention we had gotten our son (diagnosed with regressive autism at 18 mos.) mainstreamed by first grade and at grade level until 3rd grade, when we missed a bout of strep and it later appeared elsewhere on his body. Eventually, we were able to diagnosis, but that infection began a slow and steady decline until we ‘lost’ him again. Thank you to this website, which helped us to arrive at the diagnosis. After a few rounds of antibiotics, we were so encouraged that we tried the steroid burst. What a clear flag that was for us— we began to see that we could get him back again. We have decided to go the ‘tonsil out’ route and then will pursue IVIG. Without this site as our starting point (until the NIMH updated its site on PANS), we would be in a very sad and hopeless place. The “webpediatrics” is also great site for those who are looking. Thanks!
I believe my son has pandas at 3 yrs old he was diagnosed with autisum but since then has went backwards he has had strep several times every year,his nose bothers him to were he is unching himself. and a uti not sure why with no signs of fever ,pain nothing he has gotten 80 % better after i begged the doc to place him on penicillan for 30 days . before this he was ticing like crazy, had teribble nightmares, ocd , and anxiety issues terrible . every doctor that i have taken him to is a dead end road they dont want to talk about pandas , he just turned 7 in july of this yr. and i do see this improvement but scared to death of what is going to happen when he is not taking them anymore. please help
Kim, we responded to you via email. Thank you.