New and Overwhelmed

[eljomom]

Meg's Mom---I did the scale for tics for my daughter, and she went from an 8-9 to a 28-29 within a two week period following the high fever. But my problem here is that she has stayed elevated like that for 6 months now. I do believe still that there is definitely an autoimmune issue, and that even when the bacteria/virus is cleared, the autoimmune issue has not been shut down. Does that make any sense??

 

 

Thank you! I agree. A detailed journal will help-- particularly because I am still very confused about the traditional "waxing and waning" of OCD vs. the “remission and exacerbation” of PANDAS/PITSAND.. Since strep is not always positive nor always the culprit it seems clear that I will have to be very diligent from here on out. I am kicking myself for “coasting” for so many years.

 

Now I wonder, even if he does have more traditional OCD/ADHD tendencies, what are the chances that in several years we'd identify an autoimmune component to all of these childhood issues. PANDAS seems like the tip of a huge iceberg.

iceberg tip = speaking to the choir on that!

 

I cannot stand the terms wax & wane. Hate them with a passion. Those 2 little words kept my child in a *&*% place. Here is the deal. If your child is a 15 on the Y-boc score, and sometimes goes down to a 12, and other times is an 17 - that is wax & wane - could be an autoimmune contributor - more confusing. If your child is a 15 on the y-boc score, and then goes to a 28 - then you likely have somthing else going on, and you need to look at PANDAS. It's an exacerbation. If your child is an 8 on the y-boc scale and goes to a 28 - then you definitely have an issue - something like PANDAS - IMHO. There is really no reason that you can't have a tendency to OCD & then get PANDAS on top of it. That is a very bad situation.

[eljomom]

Also, forgot to add, but I had a hard time with the ocd scale, as I really don't know how much the thoughts of germs are in her head. It's so insiduous to me....she will not eat anything that has been touched, won't turn her head my direction if I pick her up (my breath), etc....so many things I didn't realize b/c she doesn't verbalize them. The not eating from germs was obcvious---"you touched it!!!"....but the time she mentioned that she flicks her fingers (a tic in my opinion) to flick the germs off---that one is tough for me to rate.