REally overwhelmed today..

[EAMom]

Hi Baylor,

 

while you are waiting for docs, and since your son now has increased symptoms, I would definitely get strep throat cultures on your son and *everyone* else in the household. It is in easy thing to do (unless your ped is a turd, then go to a minute clinic). Do the 72 hour culture if the rapid is neg. The reason I say this, is that many PANDAS kids get strep without typical symptoms (sore throat fever). Also, PANDAS kids will react if family members are carrying strep (that is why is is important to culture others). My PANDAS dd has reacted when her sister (assymptomatic carrier) has had strep.

 

That said, many PANDAS kids will react to non-strep illnesses. Right now my 11 year old PANDAS dd is ticcing (vocal throat tic) more than she ever has (she's had 3 IVIG's over that past couple of years AND she is on long term 250mg/day Azith)for the past 3 days...and I assume it is b/c her sister is home with a 102 fever, sore throat, and cough (not strep per rapid).

 

Also, strep can hide out in non-throat locations (skin, sinuses) so just b/c the throat culture is neg, doesn't 100% mean there is no strep. But, if the cultures are positive, at least you can get some antibiotics (even if only short term).

 

I hope this helps.

[Baylor]

Hi Baylor,

 

while you are waiting for docs, and since your son now has increased symptoms, I would definitely get strep throat cultures on your son and *everyone* else in the household. It is in easy thing to do (unless your ped is a turd, then go to a minute clinic). Do the 72 hour culture if the rapid is neg. The reason I say this, is that many PANDAS kids get strep without typical symptoms (sore throat fever). Also, PANDAS kids will react if family members are carrying strep (that is why is is important to culture others). My PANDAS dd has reacted when her sister (assymptomatic carrier) has had strep.

 

That said, many PANDAS kids will react to non-strep illnesses. Right now my 11 year old PANDAS dd is ticcing (vocal throat tic) more than she ever has (she's had 3 IVIG's over that past couple of years AND she is on long term 250mg/day Azith)for the past 3 days...and I assume it is b/c her sister is home with a 102 fever, sore throat, and cough (not strep per rapid).

 

Also, strep can hide out in non-throat locations (skin, sinuses) so just b/c the throat culture is neg, doesn't 100% mean there is no strep. But, if the cultures are positive, at least you can get some antibiotics (even if only short term).

 

I hope this helps.

 

Thanks for that information. There is so much to take it about all this. I keep trying to figure out what I really want. Tomorrow AM we are going for the blood tests and part of me wants a positive result and part doesn't. I want to think this is not PANDAS but yet, I would rather it be if it can be cured. This is all new to me and my brain feels like it is in overload trying to do the right thing.

 

I can not imagine what it was like to navigate this without a board like this. The people who had to start the journey alone.

 

I am grateful to you all for the kind words, the suggestions, information and help.