Is there such a thing as non-OCD or tics P.A.N.D.A.S.?

[riffleshell]

Thanks so much for the many helpful comments. I so much appreciate the advice I have gotten.

 

Quick update: I took him back to his doctor 10 days ago and it turned out he did still have an active strep infection so we got a stronger antibiotic and just finished that up. His behavior is dramatically improved -- no more crazy fears, sleep programs, anger, clinginess, etc. The only remaining symptom are just that he seems a little less mature, more forgetful, more emotional and seems to have a harder time concentrating. All in all he's just more ADHD than he was before.

 

But it isn't something that is terribly obvious to others like it was before.

 

(He very likely always has had ADHD but I have never sough a diagnosis for him because he's such a sweet awesome kid most of the time. Since I didn't want to medicate him I didn't see the need to a doctor to tell me what I already knew.)

 

At any rate, we see a pediatric neurologist on Friday. He is apparently knowledgeable about PANDAS. My pediatrician got us bumped up the priority queue, apparently otherwise it would have taken months to see him. We will see.

 

Thanks all.

[Mommy2MCL]

Good luck and keep us posted. If you find this dr. not to be knowledgeable in PANDAS or you aren't happy keep fighting... Or at least a blood test. My understanding of this is if he were to present again with another infection it could get worse and harder to recover from.

 

Good luck with the Dr...

[riffleshell]

I just wanted to update this thread and let folks know that we got a conclusive PANDAS/PANS diagnosis back in December. The doctor believes that he is on his way to recovery, but he is not all the way there yet.

[nicklemama]

Great news.

[Rachel]

Thanks for bumping this post up. My son has never been diagnoised with OCD but has the antibodies according to the Cunningham Panel. My son saw Dr. Rao in Plano, Texas this last December. He was diagnosied with Unspecific Encephalities. I'm learning so much so quick and so glad I found this forum.

Rachel

[jferinga]

We were recently at the NIH and met Swedo and several other doctors on her team. They provided clarification on the antibiotic use (propylaxis). They stated that the initial round of antibiotics should be strong enough to rid the body of antibiotics. The propylaxis antibiotics are to prevent reinfection (reinfection was the key) so the body can heal the damage from the autoimmune process.

 

We have explained it in this manner to others and they finally understand. Our PED didn;t like propylaxis abx however did understand the reasoning. We mentioned, do the propylaxis or do ivig/pex. You choose.

[JoyBop]

jferinga, did dr swedo say there was a choice? I was told to stay on abx long term either with or without the IV Ig. Perhaps every case is different.