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DebC

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Everything posted by DebC

  1. Our daughter never reacted with other infections until her PANDAS started after a strep infection. During her strep recovery, her sinus infections would set off additional behaviors. Now that symptoms are minimal, colds and other infection have not set it off. They recently had a strep outbreak at school and we convinced our ENT to put her on Augmentin to protect her. We noticed that just the exposure caused a small increase in behaviors.
  2. I'm in the process of handing mine out as well. In fact, I followed Beth's suggestion and sent one to the Obamas along with our family's story. I also sent one along with a similar letter to Dr. Kurlan and stated how much harm his webinars against PANDAS will do to PANDAS families: "Our story and that of others I have gotten to know through this journey are my reason for writing to you today. Doctors who say that PANDAS does not exist are not taking into account that these symptoms were not present until a strep infection. The symptoms just suddenly appear and gradually go away
  3. Thank you, thank you, thank you for your post. What a wonderful thing to give all of us a gift on YOUR birthday! I can't begin to tell you how wonderful it is to read a post by someone who is living life to its fullest with PANDAS! It gives such hope to those of us with PANDAS children, knowing that they can learn to live and manage their symptoms.
  4. Poster name: DebC Location: Plano, TX Childs year of birthL 9/2000 Present age: 9 Gender: Female Weight: I'm guessing 55 to 65 lbs. Brief history of symptoms/when they started: First onset of symptoms was probably when our daughter was 7 and in the first grade. She started obsessively cleaning her room after a case of strep. We didn't link the two and thought it was a great phase as her room was extremely neat. In January of 2009, during 2nd grade and at the age of 8, our daughter had her major exacerbation. She went to bed on a Wednesday evening a perfectly "normal"
  5. Our non PANDAS child has this problem with antibiotics and we find that Yakult (in the yogurt section) really helps a ton.
  6. Thanks, mama2alex! I sent a message to Dr. Gupta. Hopefully if more parents do so, he will do a story on PANDAS as well.
  7. Our daughter had flu mist this fall and had a mild onset of OCD symptoms. She is still exhibiting some obsessive cleaning, but we can all live with that as it's mild. It will probably dissipate with time. I am guessing that the mist had something to do with it. However, during this time, H1N1 was rampant in school and her brother had it so I'm still not completely positive that this wasn't also triggered by exposure to other illness. It's hard to say. Fall and winter are hard on these kids since their bodies are always fighting off illness. That being said, I probably won't have the mis
  8. I got one too and blocked it as well. Too bad there isn't a report button for messages.
  9. One thing to change is that CBT should be cognitive behavioral therapy. Our daughter has done this and it has helped. I agree on the SSRI's. Our psychiatrist tried them for a few months and when our daughter's behavior became whacky every evening at bedtime, almost drunk behavior, I took her off the drugs against his advice. Within a week, those episodes were gone. It was unbelievable how they were extending her PANDAS exacerbation.
  10. Our PANDAS child still has her tonsils. However, our 5 year old, non PANDAS son had his tonsils removed last November a week and a half before Thanksgiving. The biggest piece of advice I can give is to give pain meds around the clock. We set the alarm to ring every time he was due a dose and woke him to give him the medication. That way, we stayed ahead of the pain. Also, around day 5 to 7, you see a dramatic improvement in pain level but that is typically short lived as the scabs start to come off a day or two later. Then the pain is as bad or worse than at the beginning. At day 10, it
  11. Thanks for sharing! I love to hear success stories. They provide so much hope!
  12. Our daughter can take her pills if we put them in a spoon of flavored yogurt or apple sauce.
  13. Our daughter also had giddy episodes at night. Those episodes were much worse when her psychiatrist had put her on Prozac. Then, they were almost drunk episodes. I pulled her off of the Prozac after several months and then we were just back to occasional giddiness. Do you notice that your children's pupils are also dilated at night? I notice this with our daughter and wonder if it's from PANDAS or it it's just how her eyes function.
  14. lismom - we are working with a homeopathic protocol similar in theory to antibiotics but with a different substance. when we started this, i posted here often asking how people were rating their treatments. overwhelmingly, it was based on the parent's observations of how their child was doing. of course, you mention the H1N1 which could certainly be a factor, but 3 months sounds like a rather long time to me to not see an improvement. do you see improvements but just not back to 100%? or is it that you don't really see any improvement at all? solely my opinion, if you see some impr
  15. Our daughter does get strep. She's 9 now and was diagnosed in January with PANDAS. Her throat doesn't get sore, but she starts to feel bad, gets dark circles under her eyes, and then throws up due glands that swell with strep. Any time she throws up, I know to take her in for a culture. He symptoms are severe OCD anxiety along with separation anxiety. It took about 3 months for her to return to near normal after her mid January strep. At her worst, she was pretty much non functioning in January. Her first PANDAS episode was probably 2 years ago in first grade. After a bout of strep, he
  16. We live in the Dallas area. Our pediatrician is the one listed on Beth Maloney's site who diagnosed our daughter. However, as I had her specify, he only diagnoses. Our neurologist confirmed PANDAS (titers then weren't high) but since our daughter had no physical symptoms, he doesn't treat further. He would do more if there were tics but she only has the OCD portion. Our psychologist is great at working with her using CBT but this only goes so far. I am getting ready to send very long 4 page letters to our pediatrician and ENT giving them consult information of doctors who are currently t
  17. Our 9 year old daughter was diagnosed with PANDAS in January at the age of 8. Her behaviors normalized after her bout with strep and treatment with antibiotic and then time. I have seen an upswing in obsessive neatness in the last 2 weeks. Her brother had strep and our daughter was also put on Augmentin for 10 days during that time. The behaviors have continued to increase ever so slightly. I want to stop anything that is starting to happen and want to get a blood test run. I plan to request that her pediatrician run a test for the ASO (Antistrep-O) titer and the AntiDNaseB titer. Is th
  18. Our daughter (9) has PANDAS. Our son (5) became sick 2 weeks ago and when I took him in to Acute Care on a Sunday, suspecting influenza as it has been rampant here in Texas for 8 weeks, he ended up testing positive for strep as well. I asked the doctor who saw us to please prescribe for our daughter as well. I explained that she had PANDAS. She put our daughter on a slightly lower dose of Augmentin and our daughter has done well. I have seen a slight uptick in straightening of rooms which always accompanies her PANDAS symptoms when she has a small flare, but so far that has been the exten
  19. Our daughter received her booster chicken pox vaccine when she was 7 and in the first grade. Within 14 days of receiving the shot, she had shingles on her ear. At first they thought it was a staph infection as it was blistered, but as it continued to recur and tested negative for staph, it was determined that it was shingles. Merck was very interested in this reaction at the time, but by the time they were involved, the blistering was done and there were no fluid samples available to send to them. The area was inflamed and sore for over a month. During the same fall, our daughter had stre
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