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Everything posted by T_Anna

  1. Mayzoo, thanks!! I will read the articles, sounds scary and interesting. I don't think either doctor would be ok with it....or DH, but I will see what the articles say, God knows the medical poisons we have already tried. Cream and Compounding pharmacy - what a great idea!! We already get LDN from skips, I'll do some research. Every night I use this CBD cream/Salve and that may be something to try on his feet. I sleep great and it's much milder than the CBD oil under the tongue. Thanks again, T.Anna
  2. Thanks MomsLove. CBD - Yes, we are still using CBD - 20 drops x 2 a day. Gaia Passion Flower - We also added Gaia Passion Flower which definitely helps calm him before bed (he hadn't taken it Wednesday night and slept poorly)...I bought it at a regular health food store - similar to a small Whole Foods. Ativan - It didn't work for us. Tried it a few times. In fact it made DS more anxious/nervous. Min-Tran - A friend suggested Min-Tran which she said is great and she got it from her chiropractor, it looks like it's mostly Calcium 120 mg 10%, Iodine 200 mcg 135%, Magnesium 19 mg 4% in 4 pill
  3. A little bit of an update: DS16 did well cognitively with the neuro-psych evaluation. He was average in many areas and the school seemed able to accommodate him in a modified 11th grade. Today is day #2 of school and he generally had a good day reconnecting with friends and old teachers. He did get annoyed, because they switched around his classes and teachers from what they promised during orientation on Wednesday. And one of his issues is that he doesn't do well with change : / This morning when DH & I went to wake him up, we woke up OCD instead. DS16 describes it as havin
  4. Has anyone taken their child to a Shaman healing? Can you tell me about your experience? TIA, T.Anna
  5. Any recommendations for a therapist in Bronx, Manhattan, Lower Westchester or Northern NJ? Anyone ever work with Dr. Sharon K. Farber, Ph.D. Psychotherapist 914-478-1924 Hastings-on-Hudson, NYShe's on Pandas network site. Thanks in advance, T.Anna
  6. DS16 was very emotional before his mental break through (after 5 doses). Yes, it made him a bit manic. give it a few more days, T.Anna
  7. Ok, so I just read an article in the New Yorker about a family's journey with rare disease. The father had written a blog post “Hunting Down My Son’s Killer” http://www.newyorker.com/magazine/2014/07/21/one-of-a-kind-2 In the article he mentione that their son found some relief from NAC and .... Highly Concentrated Cocoa Extract So I did some research and found this review on a product called CocoaVia (looks to be from the father in the article): Helps with glutathione-deficiency By Matt on October 9, 2013 Verified Purchase My son has an extremely rare genetic disorder which
  8. Ds16 has the same issue. He will be up and at the breakfast table and just sit there while I'm waiting to take him to school. He has gotten better as he's started feeling better.
  9. Yes. IVIG can def skew blood results. We have always been told to wait 6 weeks post IVIG to get blood work done. When we were doing more IVIGs we watched the symptoms to see if things were trending up or down. T.Anna
  10. Ok, we added the Namenda back in on Wednesday and so far Thursday and Friday have been better. Hopefully, it will keep working. We also are only doing 1 Neurochondria a day (AM) and so far so good with that too. Wondering how long it will take to get urine test results : / T.Anna
  11. Thanks for the feedback! Initially I started with 1 pill and that seemed fine so we worked up to 3 pills. He was feeling more energetic and wanted to ramp up too. What have I stopped? I stopped the Nameda. I asked him if he was feeling any more brain fog the past few days and he said definitely (after reviewing what that meant). So I added it back this morning and he seems in a much better place today with the 1 pill of supplement and the Namenda. What have I added: We also added ViraStop after tittering up the Neurochondria. Changes? Yes, summer school is ending and he has a f
  12. So DS16 is really anxious again, can it be too much folate? We just added a supplement for his suspected Mito dysfunction. We are using Neurochondria and it seems to have a lot of stuff inside. Here are the ingredients for Neurochondria: Three Capsules Contains: Vitamin B12 (as Methylcobalamin) 1.5 mg. Folate (as L-5-Methyltetrahydrofolate from L-5-Methyltetrahydrofolic Acid, Glucosamine Salt ) 300 mcg. Acetyl-L-Carnitine (as Acetyl-L-Carnitine Chloride) 300 mg. Benfotiamine* 250 mg Coenzyme Q10 150 mg. Glutathione (Reduced) 150 mg. Phosphatidylserine 150 mg. R-Lipoic Acid (as Sodium R-Li
  13. We just did an Organix test and are waiting for those results too. T.Anna
  14. We have been using Namenda for about a month. I am going to update my charts now, but it might be part of the reason that DS16 is still struggling with OCD. He is going to summer school and going out and about, but lately he has been suffering from anorexia. Restrictive eating has always been a PANS symptom here, but lately he has lost a ton of weight (he's 5'56" and went from 107 in May to 91.8 last Wednesday) and he really had NO appetite. We found that his thyroid may have recovered some functionality and we were probably over medicating him with Synthroid + Thyroid Support. We stopped
  15. We were on mino for a long time, since it passes the BBB it seemed like the right choice, but it did not seem to help. I'm glad to report that he has eaten every day this weekend (only one meal, but it's a start). So maybe it was the thyroid condition (retesting next Monday), or the Ceftin. Started supplementing the mito issue so hoping this week brings more improvements. Thanks as always T.anna
  16. Thanks! We are currently with Dr.C in Mt.Kisco and happy with them. Someone recommended this doctor, but after some feedback and research I'll stick with Dr.C in the meantime. One complaint was that this doctor's office doesn't return calls, I have very little patients left for that style of doctor. If only doctors knew how much phone etiquette and prompt response would help their business : / T.Anna
  17. Maybe Ceftin will be the right abx for us, we've tried so many. We are also on a ton of supplements, but every time I think of scaling things down I remember why we added it : / T.Anna
  18. Ophelia, have you ever checked for Mitochondrial Dysfunction? The symptoms sound very similar and it explains why you are so sensitive to medications. Our integrative neurologist recommended 1-3 of these a day: Neurochondria http://www.amazon.com/gp/product/B001BA9EPK/ref=oh_details_o00_s00_i00?ie=UTF8&psc=1 T.Anna
  19. Integrative neurologist just recommended ViraStop for DS16 who has many virus issues (HHV6 & Coxsackie). We are also doing Valtrex and Reishe. We just doubled the Reishe and hope to titer off Valtrex in a few months. T.Anna
  20. thanks Searching for Help! Today he is grilling and has made lists etc. I am just hoping he will be content. He seems a bit more mellow so maybe the Thyroid numbers were impacting him. Thanks, T.Anna
  21. FrikFrak Just deleted a ton of stuff. Thanks,
  22. Anyone have experience with this doctor? We are currently seeing Dr. Daniel Cameron, but this doctor was recommended. T.Anna
  23. Took DS16 to LLMD yesterday. Switched him from rifampin/Azith to Ceftin/Azith. She said that CEFTIN was the closest thing to IV abx(??) DS weighed almost 92 lbs (5'6") and for the first time admitted that OCD was the real reason he doesn't eat (and admitted "I realize I have an eating disorder, I just don't want to be fat."). Sunday we learned that his thyroid is over active (was under active since the fall) so we stopped the synthroid and thyroid supplement. His doctors believe that was impacting his appetite too) The LLMD said Lyme can affect thyroid numbers too. - If he is not eating beca
  24. Anyone ever try an appetite enhanser? Know anything about this one? Apetamin Cyproheptadine Lysine & Vitamins Syrup -200ml
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