Cummingham test pre-initial onset

[EAMom]

50 pounder can have 200mg (1 reg. OTC pill) of Ibuprofen/advil 3-4 times a day for the short term (a few days).

 

Our dd (58 pounds now) is on 200mg once a day long term (indefinitely-so far it's been a year).

[tpotter]

My younger son is the one with "classic" symptoms...came on suddenly post sinus infection, tics, ocd, rages, anxiety, etc., etc., etc.

 

When his older brother had severe psych symptoms last year (hospitalized), and all they did was put him on anxiety meds that did nothing, that was our first indication that there was a problem. BUT, we still didn't suspect. doctors thought he was bipolar at that point (he's also dx with Aspeger's, and HAD been tested by Dr. T....ASO and AntiDnaseB previously...not high). Things got worse that year. Then, we found Dr. K, and his paper which talked about PANDAS in adolesc, and adults. One of them sounded just like my son. We were on a plane shortly thereafter to Chicago. He confirmed the dx of PANDAS. Then we found Dr. Cunningham, had BOTH kids tested, and, yes, he's positive. Had PEX in September. Doing infinitely better, but symptoms starting to come back (he's on the list to repeat.) He had strep constantly as a young child, and also had an allergic reaction to the Mumps vaccine (broke out in hives.) He did not come on suddenly, as far as we know, but then again, the dx of Asperger's, positive hx of strep infection, family hx, and family hx of autoimmune illness, pretty much confirms it. Also, since symptoms are returning, and there is a question again of whether or not it is PANDAS, I repeated Dr. C's test. CamK is about 134, which is in the PANDAS range.

 

So, no, didn't test younger sib, but did test older sib, and he is positive.

 

Good luck

[tpotter]

If she has PANDAS, you will probably want to do a T & A, because the strep can get stuck there, and not be visible. All our PANDAS docs that we've been to said to do it, and we did.

[matis_mom]

If she has PANDAS, you will probably want to do a T & A, because the strep can get stuck there, and not be visible. All our PANDAS docs that we've been to said to do it, and we did.

Thanks all for the replies. I am going to try ibuprofen and see how she does. I am so hoping this just passes. But then again, looking back at my PANDAS ds's history, I can see soooo many things that passed and came back and I see a partern of building up to last year. Every now and then I see in another parents' posts things that I hadn't thought of. Like yesterday someone mentioned stuttering: he had stuttering episodes at age 5! (not until age 11 did we see more severe neuro/psych symtoms)

 

Well, whatever comes, we'll have to deal with, one day at a time.

 

I am sorry to have side-tracked the original topic!

 

Isabel