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About jenb3106

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    Austin, TX
  1. My dd10 has started getting canker sores (or maybe I am just really noticing it) this go round with PANDAS. Interesting. They have been worse the last week or so and dd7 came down with strep throat last Thursday. DD10 is still on antibiotics for this last flare, but I thought I noticed a mild increase in symptoms (moodiness, more distracted, reported feeling "not right") this last week also (actually going back into the week before that, also). She seems better now. I wonder if it is all related...
  2. Mu daughter had an extreme, adverse effect when given a low dose of Klonopin to calm her down and allow her to get some sleep. So much so that she looked like she was in a psychosis for about 24 hours. The doctor then talked me into a low does of Seroquel for the sedative effect, but it did not sedate her at all and in fact made her sleep even worse. At that point I told the doctor she would not be trying any other psychotropic meds. I have a friend who has bipolar disorder who told me that the lowest does of Seroquel makes her so sleepy she cannot even function. I guess these kids jus
  3. My dd7 has meltdowns/tantrums that are usually triggered by a change or some expectation she has that is not being met. Basically she is very rigid in what her expectations are of what's going to happen next, ie. transitions. Of course, mostly at home and with me (the moms are usually the ones that bear the brunt of it, right?!). The problem is that she doesn't verbalize what she expects to be happening to me, she does goes into meltdown and loses all reasoning. And it doesn't happen all of the time, so we (mostly me!) is left to guess when, where and why. However, she is not my child tha
  4. Oh my. I checked out that thread. Yes, I will get dd7 checked. Thank you!
  5. So, after gathering all of the information I could find and putting together a four page documentation of episodes my dd10 has been through with her anxiety and OCD (the last two in which she was treated for strep), I finally got our pediatrician on our side and thinking that this is a case of PANDAS. Which is great except she has no idea how to treat and our efforts to locate someone (more or less locally) have not gone all that well. However, she did decide to keep her on antibiotics for the time being and we are going to retest her ASO titer next week (it was at 2000 on February 1st when
  6. I just took my daughter off Ritalin as we are in the middle of the a strep episode and it has increased her OCD since she got sick (ASO titers at 2000). We are just now seeking treatment for PANDAS, so I don't have any advice to offer for someone who is in remission. However, here is our experience... At the time we started our dd10 on the adhd meds we had known that adhd was an issue for a while (she also has learning disabilities) but she was NOT diagnosed with PANDAS although we had been through our initial episode about six months earlier. She was already on Zoloft as a result of that
  7. There is a product called No Phenol, I forget which lab makes it. I have used it successfully with my younger DD(7). You might want to try it if you think this may be part of the problem.
  8. Oh yes, my daughter has had that same problem. All I can tell you is that it seems to happens when we are in our worst strep related episodes. And it seems to be related to her OCD raging out of control. We do not, as of yet, have a pandas diagnosis because my doctors here haven't been supportive. So I don't have any other advice to offer. However I can tell you when she starts doing that we take it as a sign that things are about to spiral out of control. Last year she started doing it again about 10 days after she had finished amoxicillin for strep. I was able to convince her doc to p
  9. Ok, you have my attention! I am in Austin and looking for a PANDAS doctor. We are in the middle of a strep infection, DD's ASO titers were at 2000 last week.. Our doctor here is probably not going to prescribe antibiotics beyond normal 10 day course (which we finish this weekend). Just tonight she admitted to an increase in obsessive thoughts...
  10. Wow, thanks so much for the input! I am going to start making some phone calls in the morning. Jennifer
  11. Thanks eljomom for your feedback. I didn't even get into the fact that my extended family has a long history of problems with strep in my ridiculously long post (with a ton of typos - sorry!). When I try to look at it objectively, it seems so obvious, But so far, non of the highly trained medical and mental health professionals in our life have been supportive or had anything to add. We have tried to do everything we can think of to help our daughter, and we have had to private pay for almost all of it (psychologist, psychiatrist, OT, dyslexia tutors, private school...). Now I am wondering
  12. Hi and sorry this is so long! First of all, what a great forum this is! I have already gotten tons of useful information just from reading some of the posts over the last few days. So, I thought I would post our story and see if anyone here had some advice or feedback for us. Here's our backstory: In January of 2009 my dd, 8 at the time, developed a sudden onset case of OCD. But we did not realize it was OCD at the time. My dd has had a history of anxiety and was treated at one time for a phobia. So, one night she woke up in the middle of night with this overwhelming fear of thro
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