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swarmie

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  1. I spoke with my friend tonight and she said it is believed that her son had the coxsackievirus in the past. In other words, I misunderstood and thought her son's bloodwork showed an active case of it. Not so. She also says that her son must have been sick multiple times after he contracted the coxsackievirus, whenever that was. Is it normal for someone with PANS that has gone untreated to show no PANS-related behaviors while exposed to various infections until one day...while sick with another nasty cold you all of a sudden have severe OCD? I think my friend is having doubts whe
  2. My friend's ds has been diagnosed with mitochondrial disease as his primary disease with mild autism as a secondary disorder. MD does have a significant impact on the immune system, I know. Hmm. I know it's a shot in the dark, but I wonder if perhaps MD + the mild autism + the coxsackievirus could have enough to trigger the onset of PANS?? Or maybe it's just that MD (and even mild autism) only impacts the integrity of the immune system, thereby making one more susceptable to catching infections that lead to PANS? I believe my friend commented that Dr. T. stated to her that kids with MD ar
  3. Yes, I knew that kids with pre-existing PANDAS or PITANDS could exhibit OCD behaviors (or any behavior related to the dx.) with the onset of any viral or bacterial infection. However, based upon what I've read in the past, I was under the impression that PANDAS/PITANDS could only form initially by a bacterial infection and not a viral infection(?). Not that it isn't out there...but I couldn't find any research online (besides Dr. T.'s radio podcast) to support this theory that viral infections literally caused PITANDS/PANDAS, so I was wondering if Dr. T. was formulating his own hypothesis ab
  4. Thank you all for your responses. Hayley, we are eager to hear what Dr. L. has to say about the coxsackie virus acting as a trigger to PANDAS. I will pray for your daughter... I'll pray for all the families on this board who are effected by PANDAS/PITANDS.
  5. I am a parent of a seven-year-old daughter who was diagnosed with PITANDS in 2010. Dr. T. was her doctor. Well, now my friend's eight-year-old son recently showed a sudden SEVERE onset of OCD. Dr. T. recently ran a series of blood tests in an attempt to rule out PITANDS/PANDAS. Unfortunately, Dr. T. could find no infections in her ds's body; however, my friend's ds did show that he had the hand/foot/mouth coxsackievirus. Dr. T. recommended as the first course of action to rule out strep even though his bloodwork did not indicate his body had this infection. (I understand that MANY k
  6. Cindy, sorry to hold up Dr. T's phone line:). I remember when I tried to call Dr. T. for the first time I bet I called at least 7 times in a row, desperate like, hoping the line would be free to talk to someone or at the very least leave a message.... (He must have only one line??) Thank you for sharing with me! I wonder if we'll be in a similar situation in that the blood tests won't tell a whole lot??? It will be interesting to see how my dd does with the biacin. Dr. T. says if this is PANDAS/PITANDS, then she is probably experiencing her first episode, given the "mildness" of he
  7. Thanks again for your responses! I really appreciate all of the sharing of personal accounts as well as the advice and referrals. I wanted to share with you what steps we have taken since I last communicated on this forum. I have taken the advice to call a medical professional who has previously diagnosed and treated PANDAS successfully. Specifically, I called Dr. Trifiletti (Dr. T., as he likes to be called) for a phone consultation, which took place this morning (Sat.). (He responded very quickly!) I believe we are now in very good hands!!! Dr. T has ordered several blood tests to
  8. Thank you so very much for the responses to my plea for help. It is so nice to be able to communicate with other families, like you, who can offer support and advice. My brain is now mush at this late hour, but wanted to make sure to pass along my thanks before my night ended. Tonight, my daughter said to me, "I have a lot of bad thoughts and I think about death a lot...I want a doctor to take these thoughts away." How sad is that? Anyway, I emailed Dr. T for advice. Today my best friend who has been helping me found a family in KY, my home state, who has a child diagnosed with PANDAS.
  9. On Nov. 9, my 6 year old daughter started to exhibit very sudden, significant changes in behavior. I have been told her behaviors fit mostly under the Scrupulosity category of OCD. Some examples of behaviors include my daughter saying, "I want to worship Satan...Daddy, I'm afraid Mommy is going downstairs to get a sword and kill me...I'm afraid the church will kill me...I want to worship junk more than God...I feel like dying is interesting...I kind of want to make a fire, but I know I shouldn't." These type of statements seem to have come from no where??? For 4/9 days she has shown emotio
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