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drifter

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  1. 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.
  2. Thanks Adkmom! Yes- I made it here thanks to you and have started my journey (again). We are in the process of finding a doc who will at least consider PANDAS. I sent a request on the Find a Dr. website. Have not heard a response yet. Someone said it here and I saw it again on a video-- If a child has OCD, then PANDAS should at least be considered first and ruled out. I'm still not sure what to think-- but now know I need to pursue this lead anyway. Thank you to ALL for your kind responses. I will follow the advice and a) ask for throat cultures and blood work on all the family members and keep a detailed history from now on--- plus trial of motrin I so appreciate everyone here. Amazing how fast the hours fly by when you spend your time on this research and this forum. Worth every second though I believe.
  3. Hello Everyone, I am new to this forum. I connected with a few other PANDAS parents but thought I'd now reach out further. I was referred to this forum. Let me first say, we do NOT have the PANDAS diagnosis. I'm not sure one way or the other and this is why I write today. My son has always been interesting but...I feel he was a normal preschooler with the exception of a fear of loud noises. He had a wonderful time in preschool and was never a problem for his teachers. At age 5, he presented with a touching compulsion and increased separation anxiety-- about mid way through Kindergarten. Everything he touched had to go to his nose. He developed a blister from all the rubbing. It was not because he wanted to smell things-- it was to "feel right." His Dr. at the time, felt it was just a phase. Sure enough it went away after a few months. At age 6--first grade, he did not display any compulsions or tics that I can remember. He did have some issues with impulsivity-- again about mid way through the school year. They gave him the "maybe ADHD," diagnoses. We did not start meds-- we switched schools, to a smaller more structured one. Great success--impulsivity was well managed by his teachers at the new school and he thrived. He was placed in all accelerated classes and was very successful academically. At age 7 and 1/2--second grade--- he developed another touching compulsion; tapping people or objects a certain number of times, retracing steps, shutting the car door repeatedly, deep knee bends to tap his knees on the ground until it "felt right." We took him to a psychiatrist who dx'd OCD. He did not think it was PANDAS (this was two years ago) because of the other issues in his history-- the anxiety that I saw about loud noises and the impulsivity we saw in first grade... He prescribed Zoloft. This was horrible. My son reacted by bouncing off the walls and becoming very irritable. We took him off right away. After about a month his symptoms started to fade away on their own and wnet completely away. Very regrettably, I didn't pursue this any further. I now know that that was a mistake. Age 8, third grade-- no real problems at all --maybe some brief periods of hyperactivity and anxiety at home. But now, at age 9, his touching compulsion is back-- it just appeared one day. We do have a history of strep but I don’t remember a correlation (was not really thinking PANDAS) until this time. My younger son had strep X 2 at the same time the compulsions in my older son appeared. My older son was sick too for a few days but we did not diagnose strep in him. We didn’t test him because he felt better after two days. Now it’s been a month since the strep issue and the compulsions are already fading again. I am now just reading about all the PANDAS news and I'm wondering—could this be possible? So—after all of that--- my questions: 1) do you think its possible despite the other issues with anxiety and impulsivity (????adhd)? 2) Since this latest round is already fading and since it’s been over a month since the strep—do I still go ahead and ask for blood tests. What if they are negative? Would it be better to wait until the next “flare up?”
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