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Everything posted by bmam

  1. eljomom, I hear your frustration! I, too, am beyond frustrated that the NIH-YALE study is limited to 12 yrs. old. We are dealing with now 19 yr. olds (PANS since middle school possibly prior) that have debilitating symptoms. They are profile perfect for the study, but for their age. Plus, they are identical twins, so we have a study within a study. We made it through high school, but college is posing a challenge. We are on the books for the first IVIG, for one. The other will start prophylactic abx. We are hoping and praying for success.
  2. The post above is not Noah, but rather his mother........bmam....oops, I didn't realize I was using his log in..... I apologize I have been away from this forum for so long. After our consult with Dr. K and not getting definitive answers regarding the IVIG back in Feb 2010, we continued treatment with abx, a hope and a prayer. It got us through for a while, but then a mild episode hit in the spring. We successfully treated with abx. But enough was enough. Before leaping into the unknown with IVIG we thought we would go the toncilectomy route. So, last summer, we decided to finally have the
  3. THANK YOU LAURENJOHNSONSMOM........you are terrific, thank you for sharing. When faced with the choice on the next step in treatment, it is so difficult. You want to help one thing and only pray it doesn't set another off. I hope people will keep this thread going and share their successes/setbacks and IVIG experiences. Once we decide to do it, I will share for sure.
  4. I am so new to this forum and how to use it properly. Haven't learned how to copy quotes yet. I will say that I feel like I finally found a home. THANK YOU EVERYONE for your helpful posts! I have found so much hope and comfort through your posts. We are weighing the pros and cons of IVIG. I haven't heard enough stories for my boys age group that it has helped put kids in remission and reset their auto-immune system. DCMOM thank you for sharing. And, please keep coming back!!! You are an inspiration. Everyone on here is an inspiration, as we all know how difficult live can be living with t
  5. We can't seem to get a definitive answer that IVIG works....most of the people that have reported success have only found success for a short period of time. The symptoms always seem to reappear. If that is the case, why the IVIG?? Is there anybody that has a symptom free child post IVIG?? If so, how long symptom free? What is the prognosis for long term? We are contemplating the positives with the negatives for IVIG. Also, would like to hear the negative side affects so that we can see both the good and bad. Would love some answers, as we are perplexed which route to take.
  6. I am new to this website and didn't go into detail of our situation. I have tds (twin dear sons)17 yrs. They both suffer from what we now believe to be PANDAS. My husband had suspicions for years, but I didn't believe it. Our ped. didn't believe it. Our psychiatrist thought perhaps, but didn't know enough about it. We convinced our ped to put the boys on abx when they would start to exhibit signs of deterioration ususally the mental came before the physical. He was agreeable, but very skeptical. We finally had our first phone consult with Dr. K. He prescribed an 80 mg. burst of Predni
  7. my son who is about 180-200 ls. was put on a 5 day 80mg burst of Prednisone by Dr. K. Hope this helps!!
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