Chemar

[P_Mom]

Hi Cheri,

Me again, just with more thought in my head for a change.

 

Anyway, I know you have been to many doctors and know what you are dealing with as you have been for many years, and I am no doctor and what do I know???...but, with the thing with your husband and strep...could you humor me and answer a couple of questions I have floating around in my head?

 

Did your sons explosion of tics, at age 10, occur any time near your older sons strep infection? (did I already ask you that?)

How long after this explosion did your son get checked for PANDAS at Shands? Were his symptoms still as severe as in onset when he was checked for PANDAS?

 

Thanks...sorry to be so stuck on this PANDAS thing.....I am like Caryn, aka ,"gluten lady", I think I'll start to call myself "PANDAS Woman."

[Chemar]

Hi Kelly

 

my son's explosive burst of symptoms around 10yo was about a year before my older son got strep throat and we honestly didnt notice any waxing in younger son with that. I recall being amazed that he did not get strep too. But his tics were in such constant wax mode at the time that i likely wouldnt have noticed them kickin up any notches

 

TS son went for his testing at Shands about 6 months after oldest had strep

At the time we were at Shands, my son was still on the medications, and it was one of the associates there who helped me wean him off them and also taught us a lot re OCD/tic interactions etc. He was great and the only reason we stopped seeing him was he moved abroad. BIG loss!

to answer your other question, my son's symptoms were worse when he was at Shands than they had been at the time of the explosive "onset", attributed to the fact that things had worsened due to the severe side effects of the drugs, especially related to his OCD

 

so nope ...doesnt look like any PANDAS in my TS son tho PITANDS concept a real possibility..especially now that we know he also has Crohn's..............now my hubby, based on the memory re his childhood severe strep, may well have had what we now call PANDAS. His family are all deceased, so I dont have anyone to ask for more details, but my husband knows he had tics and OCD from very early childhood

[P_Mom]

Thanks Cheri...that sums it up pretty well.