Ridilin disaster!

[airial95]

Yes, his initial symptoms at presentation (19 months old at onset 26 months old at dx) were OCD, ODD and ADHD. At the time, the NIH didn't acknowledge that kids that young could get PANDAS (age of onset was believed to be between 4-8, they have since removed that criteria), but my son's onset was staggering - overnight, immediately following and impetigo infection. (He went from being verbally advanced to practically non verbal in the 6 months between onset and dx). The other thing that was unclear at the time is whether ADHD was associated with PANDAS or not - this was 4 years ago, so the list of "symptoms" was a bit narrower than it is now.

 

Our ped acknowledged that 2 was a bit young to have a definitive ADHD dx, but the symptoms were clearly there. We opted to assume it was part of the PANDAS and see if those treatments helped first - but recognized the ADHD may just be ADHD on its own. It took us 3 years to finally agree to try something for the ADHD. I'm glad we waited, but I don't regret our decision.

 

We have talked about taking him off of it now that he's doing IVIG and is doing so much better now, but honestly, he's doing pretty well, just a minor bump in the road here and there, that we are too scared to change anything for the moment!!!

[JoyBop]

Airiel, if he is doing well, I wouldn't change a thing. As I've found, if your child is over stimulated, you will know!!

 

It sounds like you have really been through the war. Its great to hear that he is doing so well!

I wanted the stimulant t to work so badly!!!