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VickyLH

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  1. I'm certainly not an endocrine expert, but my son also fell off the growth chart at around age 5. He went from the 50th percentile to the second percentile by age 7. At the time our doctor didn't think it was a big deal, but I insisted we see a Pediatric Endocrinologist. The first visit was lengthy. They asked a lot of questions about his eating and sleeping habits and drew a lot of blood. We had to keep a diary of his diet for 10 days. The blood test revealed that he was IGF-1 deficient(which is the precursor to growth hormone). From there he had an MRI to rule out a tumor on or near h
  2. That's a very good point about the Nosode. At least I have it on hand if things plateau and our homeopath wants us to give it a try. -Vicky
  3. My son has been taking a homeopathic remedy for the past 4 weeks and we are seeing steady improvement! We use the same homeopath based in NYC that Stephanie uses. My son is currently still on antibiotics but I am going to start to ween him off of it and see if he continues to improve. I was so proud of him this past Saturday. He participated in a Lego Robotics competition with his First Lego League team and he had NO issues the entire 10 hour day!! It was so good to see him just being himself, chatting with friends and enjoying the day. My heart soared for him! Currently I'm havin
  4. My son also had a horrible herx reaction for about a week when he first started Azith for PANDAS. We suspected he had intracellular strep lingering from a skin strep infection he had several months prior. After the first week he had the typical sawtooth recovery and gradual improvement over the course of the next few weeks.
  5. I wish this forum had a "like" button. I agree 100%! I have enough stress within my own family to worry about dealing with added stress from a "support group". At this point, I would hesitate referring any other PANDAS/PITANDS/PANS parents to this forum for support, which is very unfortunate since I found this forum extremely helpful when our family was first hit with PANDAS last year.
  6. My son was diagnosed with PANDAS in February and we also see Dr. Corbier (we see him again next week). We live in Greensboro. I have attended the support group in Raleigh once, but it was a little too far to travel every month, especially when my son was in the middle of a PANDAS exacerbation. It was very helpful to share stories amongst other PANDAS parents though. It would be nice if there was a support group closer or a group organized through Dr. Corbier's office.
  7. I just wanted to share that I had an initial consult with Angelica Lemke this morning and it seemed to go well. She is definitely very thorough and spent OVER 3 hours with me trying to truly understand my son and our family history. If nothing else it was very therapeutic for me in that the session enabled me to try to see (and feel) my son's PANDAS from his perspective. I had several revelations that gave me a deeper understanding of what he goes through at times. It was an emotional but uplifting journey. She has prescribed Carcinocin along with a strep nosode. I will keep everyone upd
  8. I'm with you Stephanie, I've been wondering if I too have suffered from mild to moderate PANDAS throughout my life. When I really look at my history it makes sense. I had OCD/Bulimia as a child/teenager (and mild OCD as an adult) and I would go through periods of social awkwardness/withdrawal and depression with paranoia. Last fall when PANDAS hit our family hard and prior to our entire house hold being diagnosed with Strep, I felt very ill myself for several months. I constantly complained to my husband that my joints hurt, I felt anxious all the time, my personality seemed to be changing
  9. Thank you for sharing this much. I'm glad you seem to have found the path to healing that is working for you. Best wishes, Vicky
  10. Pandas16, thank you so much for sharing your success so far!! I'm so happy for you!!!! Although there are many schools of thought on this board, I think we all recognize that as of yet no one has the one-size-fits-all magic cure for our children. It's important to me that I keep my mind open to possible causes beyond Strep and to all treatments options, whether traditional or alternative. Personally I want to hear everyone's opinion and I enjoy reading some of the debates too because it gives me even more to consider and research for myself. If people didn't think outside the box and go a
  11. That is fabulous! Do you have an alternative doctor who is guiding you through the dosage? I can just imagine the look I'd get from our doctors if I suggested we try this. My interest in alternative treatments is definitely peaked though! Please keep us updated. Thank you for sharing! Vicky
  12. I can relate. My son did this when he was 8 as well. It was before we knew he had PANDAS or even OCD for that matter. He actually got expelled from school for a day for touching a girl after he had been warned not to. He didn't touch her inappropriately, but obviously it freaked her out that this boy kept touching her. At the time I couldn't understand why he was acting this way when he was really such a good kid. He felt so bad for what he did and he thought he was an awful person. He obviously couldn't explain why he did it. It breaks my heart knowing he was punished for something he
  13. Wow, that's amazing stuff. Thanks for posting it! The more I am learning about the link between the gut and psychology, the more I believe that's where our children's problems are rooted. I pray that discoveries and research in areas such as this, will ultimately cure all Autism spectrum disorders and many other autoimmune diseases which are on the rise. This also goes to show the power of a parent's insight into their child's disorder! Thanks, Vicky
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