PANDAS Based Tourettes

[emma1]

Just wanted to say that I was re-reading some posts sent to me in answer to my numerous questions, and Ronnas sent an article that stated that, indeed, PANDAS was more likely in families that had a history of tics or ocd. We have neither in our family -- though sometimes I think I am becoming obsessed trying to find answers to this PANDAS issue with my daughter!

 

Michele, my daughter won't let me tell a sole, and doesn't usually want to talk with me about it at all. I've only spoken to the doctor (definitely not chatty about it) and my husband (who doesn't really talk about it at all -- but who will occasionally tell me, if I ask, how he thinks she is doing). I am so thankful for this board or I would be totally alone (well, as alone as one can be in a house full of children)!!

[amy1]

Yes, my family is in total denial and still to this day thinks my daughter is fine and that PANDAS, etc is in my head. I had my eval report from UF (over 6 pages) and showed my sister. i am trying to be better and not caring what they think. they can think i'm nuts i guess. our parents generation didn't talk about anything and didn't question much and didn't go out and search for answers...keep on keeping on and try not to let them get to you!!!!

 

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[emma1]

Amy, I just realized that this is entitled "PANDAS Based Tourettes" and saw your post on another thread that Dr. Murphy had diagnosed your child with PANDAS and Tourettes. Does that mean that if your child has tics because of strep titres, but the tics go on for more than a year, then that child has Tourette's? I was thinking that there was TS, which had certain supplements that might help, and then there was PANDAS (tics/ocd), where antibiotics and other supplements might help. Both TS and PANDAS might look the same -- but the root causes are different -- so different approaches might be in order.

 

I guess my question is: Did Dr. Murphy say your child had TS because your child has PANDAS and has had tics for more than a year, or did she say your child had TS based on additional criteria?

 

Thanks!