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[Dedee]

Well, I have wondered if he may be out growing the PANDAS because of his age and clearly to look at him he is going through puberty at a rapid rate. He is the size of an adult man already 5'9" and 175lbs. He already has facial hair and looks much older than his 13 years. However, the simple fact that he still reacts when my other children have strep (even though he doesn't get it), tells me that we are simply "controlling" the symptoms. Back before christmas he had an episode where he began to have tics again. He had not done this for almost a year. They weren't terrible, but defininately noticable. Thank goodness he really did not have any real behavior issues at that time. We went to the pediatrician and stopped the daily antibiotics and started stronger ones (augmentin) for a two week period (even though his strep test was negative), then back to the regular ones. This seemed to help about 50%and the rest just sort of resolved gradually over the next couple of weeks. So just when you think you have this thing licked, it kicks your butt again. So I never let my guard down. I watch him constantly for flare ups, behavior changes, etc. I'm sure you know what I mean. I still feel really fortunate, but I haven't relaxed yet.

 

dcmom, about the T&A, I personally feel that for our situation it was very helpful. His tonsils were huge and full of pits where I believe the strep was never really cleared. It may have gotten better for a while but always there in his system causing the constant immune response. Immediately after his surgery he began to improve. I realize that some physicians will tell you that they can still get strep without tonsils and that tonsils are a defense line, etc. We took all that into consideration, and decided in our situation, we believed this to be a constant strep source for our son. Our ENT was supportive of our decision, even though he was not very informed about PANDAS. Of course, I realize that ENT's are surgeons and that is there primary job. Still, after making it through a rough recovery process, he has done very well. I would make the same decision again. It's hard to know what is the right or wrong thing. Only in hindsight is it clear. You can only do your best and know that is better than what many children are getting. You are pro-active in your childs care. That is the BEST thing you can be doing. Keep up the good work!

 

Dedee

[dcmom]

eamom,

 

We are new to this as well. DD just diagnosed in Feb with pandas (OCD started in january). I have heard some say that kids will grow out of pandas, but my fear is that they will not. To my knowledge there are no long term studies. I know a boy who is 16, and still struggling with OCD/ pandas. My neurologist also told me of a patient he has had since she was young, she is 22, and although doing well-ish, still struggles with flare ups. This is not encouraging. I do know a family who participated in the NIH study, and their child has been completely symptom free since plasma pheresis (about 10 yrs ago- I guess). This really makes me think.My neuro definately seems to think pex is a cure, but he also thinks its risky.

 

Do you have any insight into the difference of the risk and results of IVIG, and pex? I know a lot of families have had IVIG on this board, but the results seem mixed, at best.

 

I am reading and researchin so much, but there is just not a lot of info on prognosis, any thoughts or conclusions you have come to about where to go from here would be so appreciated.

 

(MY dd is 5. She improved after initial course of abx- but now still on abx and her OCD has stalled. Have you done a steroid burst? Her first titers were drawn last week- after 2 mos on abx and were not high- around 150 and 200, is this meaningful?).

 

Thanks,

 

Eileen