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Minette

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Everything posted by Minette

  1. I've seen many mentions of yeast in this forum, but am unclear on what that really means. My 7yo DD (pandas suspected but not diagnosed) finished her 10-day course of amox about a week ago, with no noticeable improvement in her anxiety, but also no increased problems with anything else. I had her on a probiotic that whole time and still continuing, though I don't know if it's the "best" one (she is incredibly finicky and I had to pick one I thought she would actually consume). She does eat a lot of sugar, mostly in the form of food (not soda or total junk) but still sugar. I know it's not great, but we're grateful for anything we can get into her, and we do bribe her with dessert. Does that have a connection with yeast? We have an appt with Dr. Melamed (immunologist -- recommended here) in Denver in two weeks, and I'm trying to sit tight and not attempt too many wholesale changes until we know more. Although her anxiety is a problem, it's not disabling (usually) and she is even happy a lot of the time. But I am curious about this yeast thing. If yeast were a problem, how would I know?
  2. Thank you for all the advice. I'm discouraged that after about 24 hours of being so much better, she is now starting to display those obsessive fears again. I was hoping to at least have a break for as long as the 10-day course of amox (for my sanity and because it would make it more clear that it is pandas...). Her (fraternal) twin is also now complaining of sore throat and headache -- for all I know, she caught strep from her sister. Since my DD's main fear is of people who are sick, this is going to make our family life very difficult as she refuses to be in the same room (or car) with her sister. I may try to get the other DD in to the doc tomorrow to get a culture. If she does have strep, I want her abx well underway before the first DD finishes her course! Should DH and I both be tested for strep too, even though neither of us have symptoms? I will also start calling doctors tomorrow. Thanksgiving weekend, but maybe someone will at least have a receptionist working... Thanks again. I'm so glad to have found this forum.
  3. I'm brand new at this and not even sure if my DD has PANDAS, but if she does, it was the FluMist that triggered her first noticeable episode. Both my DDs had had FluMist twice before (at ages 5 and 6) and only got the sniffles. I doubt she'll be getting any flu vaccines in future, and my other DD will get the shot.
  4. Quick update: We saw about a 90% improvement after the very first dose of amox yesterday. She was happy when I picked her up at school and didn't mention her fears one single time all evening. It was so fast, I almost thought it couldn't be the amox because I didn't think abx worked that fast. This morning she has talked a few times about feeling scared, but is still so much better than before starting the amox. I know it can't really be this easy, but this is a pretty strong indicator that we're on the right track, yes? Does therapy really not help at all? I realize it won't cure the problem, but our thought was that if she could learn some coping skills for when she does have a flare-up, that in itself would be useful. I live in Boulder, CO. I found a list of PANDAS-friendly doctors on savingsammy.com, and there is one at Children's in Denver, but when I looked him up, he actually specializes in childhood stroke...? There is also one listed in Boulder who seems to work mostly with kids with learning disabilities (which my DD doesn't have). Is it still best to start by giving one of them a call, or is there another way to find a doc who actually specializes in PANDAS? Thanks for the advice!
  5. A month ago my daughter (just turned 7) developed severe anxieties about being at school with kids who were, had been, or might be sick. She has always had an anxious temperament, and there are various other things going on that could have triggered a bout of anxiety, so we assumed it was psychological at first. But I posted about it on another parenting board and one of the moms there said I should think about PANDAS. I thought it was unlikely since as far as we knew, she'd never had strep. But then I read that it could be triggered by other illnesses or immunizations, and I realized that her anxiety had started exactly two days after a FluMist vaccine. I should mention that she was also diagnosed with celiac disease about 6 months ago. Her celiac symptoms were always mild and have completely gone away since starting the gluten-free diet. For the first couple of weeks, the anxiety was bad at school, but she was OK everywhere else. Now it seems to be spreading to all areas of life. It's not like our former child has completely disappeared, but the anxiety is obviously overwhelming her. However, she doesn't have any tics or repetitive behaviors, and her handwriting is fine. Her only symptoms are obsessive anxiety and urinary frequency (which is also not a new thing for her -- she often gets it when under emotional stress). She just started seeing a therapist for anxiety and possible OCD, and we're waiting to see how that goes. In the meantime, I finally got worried enough to have her tested for strep, and she is positive after all. (The culture was positive -- one blood titer was neg, and the other hasn't come back yet. Sorry, I don't know which is which.) So she also just started a 10-day course of amoxicillin. Too soon yet to see if it makes a difference. My question is, what do I do now? If it does turn out that she has PANDAS, I feel very lucky to have learned about it before going through the months or years of ###### that many families seem to endure. However, it also seems like there's no protocol for diagnosing or treating it without a history of multiple episodes. Would any doctor, even a PANDAS-friendly one, take me seriously after only one month and with (by comparison with other PANDAS kids) relatively mild symptoms? Or do I just have to wait and see if it gets worse? Sorry so long -- I just wanted to give whatever info might be helpful. Thanks for any advice you can give me.
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