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moosiebell

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Everything posted by moosiebell

  1. The xylitol in the xclear is a biofilm buster, per our mold doctor. She says it can cause a herx reaction, and to go slowly with it. Perhaps try waiting a day or two, and proceed with xclear only, then add the other things as tolerated.
  2. Thank you so much, LLM. He is on Welchol for the mold. He has been on multiple antiinflammatories and current on motrin prn, fish oil, and was on quercetin prior to this week. He had a better day yesterday -- no klonopin at all. Lots of OCD but never got to the point of desperate despair. We'll see what today brings...I will keep you posted. And LLM, are you in Maine as well? Thanks so much.
  3. Update: so very thankful for you suggestions and support. This week we have gone to my son's doctor locally, a psychiatrist, called Dr. M and things are still extremely bad. My son says he is physically feeling better since moving from our moldy environment 3 months ago. The first month after the move (August) was pretty good and he reported feeling better and better. He was tested postitive for MARCONS (no fungal infection) and prescribed BEGI spray by Dr. M. He started about 1 week after school began in September. He had already had one course of BEGi in May. He became very stuffy and we sta
  4. My 17 yo ds has had pandas for over 5 bloody long years, complete with diagnoses of Lyme, bartonella and an inflammatory condition secondary to mold. He sometimes does well, other times limps along, but over the past couple months he has slowly gotten worse again. When we were in a house with mold (moved 3 months ago) his anxiety was more generalized with a moderate degree of OCD-- reassurance seeking, feeling he was responsible and guilt-- but with the help of a 504 plan and Dr. M in CT, we have managed where wasn't great, but we had good and bad days. Over the past week, his symptoms to
  5. My son (age 17) has had this illness for 5 bloody long years and like most others, we have gone up and down. We found he was very sensitive to mold and even moved from our old house 2 months. We stopped antibiotics 7 months ago under Dr. M in CT. His symptoms didn't change after d/c the antibiotics. Initially after we moved he felt much better, and many of his symptoms have improved. For instance, when he is feeling well, he is truly himself-- loving, funny, energetic and creative. But those periods of time seem to be decreasing, and now prominent pandas symptoms are present-- excessive rumina
  6. Thank you, LLM. I have been giving zinc and manganese in the am only now (was giving twice a day) and have noticed OCD/ excessive worry waning. I tried the Core supplement with B6 and B12 and each time I tried it, his mind was racing and he couldn't sleep. He is having great days at school now, so am leery to change anything at the moment, but we still see a waxing and waning element of severe anxiety lasting from 15 min to 5 hours usually 2-3 x per week. BUT it is soooooooo much better than the past and I am thankful I see my son is emerging slowly but surely.
  7. LLM, Thank you. My DS14 also has PANDAS, Lyme and pyroluria. He is doing much much better over the past year with antibiotics, gluten/casein free diet and supplements including zinc and manganese. He revs up the Thorne #6 B6 supplement, so I have not been adding any B's (except what he gets in veggies/juice). I too have notice increased waxing and waning OCD and he is NOT on any copper. What copper supplement and B6 brand do you use? Any other suggestions? Again, thank you so much for all your help, Sharon
  8. I discovered a angry red doughnut size swelling with a center nodule on the inner aspect of my 13 yo son's leg a couple days ago. We brought him to urgent care, and he was diagnosed (by external exam only-- no culture) with MRSA infection (methicillin resistant staph infection) and put on doxycycline. He is on rifampin, zithromax, probenecid, augmentin xr and a bunch of anti-inflammatory supplements already. Does anyone have experience with this? My son's PANDAS symptoms have increased dramatically. Thanks, Sharon
  9. I discovered a angry red doughnut size swelling with a center nodule on the inner aspect of my 13 yo son's leg a couple days ago. We brought him to urgent care, and he was diagnosed (by external exam only-- no culture) with MRSA infection (methicillin resistant staph infection) and put on doxycycline. He is on rifampin, zithromax, probenecid, augmentin xr and a bunch of anti-inflammatory supplements already. Does anyone have experience with this? My son's PANDAS symptoms have increased dramatically. Thanks, Sharon
  10. Hi S & S, Why is your child on risperdal? I ask because we found our 13 yo DS got worse on it and eventually we took it away. He is now on rifampin/nystatin/zithromax and augmentin with much better results. The rifampin made the biggest difference.
  11. The IVIG's were 8 weeks apart. Thanks for the reassurance re the labs. They drew them on the second day of IVIG-- you would think they would make it standard practice to draw pre-ivig if the labs get skewed; otherwise why draw them? So if the ASO isn't skewed by IVIG, it shows persistent infection, doesn't it? Thanks again, S
  12. Hello, I am very frustrated right now. My 13 yo son had his 2nd IVIG with Dr. B last week. Routine labs were drawn which showed the following: WBC normal, Granulocyte 69.3 % (high) and Lymphocytes 1.11 (Low) ASO now 400 High (was 226 on 8/15/11 when this recent nightmare started) DNAase-B 255 (read as nl) -- was 168 on 8/15 Mycoplasma IgG >5 (very high) -- was 0.58 on 8/15 Mycoplasma IgM 26 (nl) -- was .35 on 8/15 I will talk with Dr. B soon, but wondered if anyone had suggestions. My son's PANDAS was EXTREMELY activated both times with the IVIG (he continues to do poor
  13. Their email is: nurses@advanced-allergy.com Hope that helps, Sharon
  14. Thank you so much...every difficult journey is so full of lessons...as pandas parents we should all be freaking geniuses by now!
  15. I do not have specific recommendations, but there is a book by Kenneth bock m.d. Callied healing the new epidemic...he is a pediatrician who advocates vaccinations at a much slower rate than the typical schedule...His office may have doc recommendations. Sharon
  16. thank you, Nancy!!! I bought the clay at Whole Foods this evening. How much did you use? Sharon
  17. Hello, My 13 yo son will have his second IVIG on Mon and Tues with Dr. B. On his last treatment, his PANDAS sx went through the roof for a couple weeks before he began to improve. Luckily we had few direct physical side-effects from the IVIG (no headache or vomiting) but his OCD, hallucinations, and fear were at at all time high. Has anyone had success with bentonite clay or activated charcoal. I bought some charcoal today, but there is no way my son will take that size pill. Thanks for all you help, Sharon
  18. Our son has had one IVIG with Dr. B and will have his second next week. Dr. B. never mentioned whether he should or shouldn't go to school, but because our son's symptoms were exacerbated by the IVIG (apparently many kids get worse initially and then better), we kept him out for a few days, before returning to a curtailed school day (secondary to his PANDAS symptoms, not the IVIG). I hope that helps, Sharon
  19. Hi, I would love to her what Dr. K said-- my son is 12 and is really struggling with OCD and hallucinations-- very terrorizing. We see Dr. B. and are starting the process of IVIG but overall we feel so helpless. What are his thoughts around the adolescent pandas kid? supplements? type of antibiotics most effective post-IVIG, etc. Thank you so much, Sharon
  20. Can you share the neurologist's name? Thanks!
  21. Dr. Price recently 'cut us loose." When antibiotics didn't work, or IVIG, she basically didn't want much to do with us. When I offered ideas from research I'd read, it was often met with not much excitement. She finally told us when denied for PEX that she wasn't going to do much of anything and we should go somewhere else. Yes she gave anti biotics, IVIG and tried to get us PEX (to shut me up from bothering her with ideas) but she gave up on us. Dr. Wu, on the other hand had lots of "outside the box ideas" and was open to any ideas when we were at a stand still. He recently prescribed the Res
  22. We are trying clomipramine 25 mg per day right now-- no noticeable difference yet. PowPow, what dose are you using?
  23. I was happy to see it in the Post as well. NIMH continues to talk about CBT and SSRI's, which is such a small part of the treatment for most kids. Nonetheless, the publicity is great. I wrote a blog about my son's and our family's journey at www.drsharonkelley.com I sometimes still can't believe how devastating this illness is...
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