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Lor

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  1. Have just been reading about high copper and testing plasma ceruloplasmin in regard to OCD symptoms. I'm wondering if anyone has a doctor who has ordered a copper or ceruloplasmin test, and if so which one... hair or blood test? My 10-year-old DS has PANDAS OCD. On reading about treatments to reduce copper levels (if he would have one) it seems that symptoms can become worse with increased zinc if it isn't replaced just right. I have read about 2 doctors on the Internet who offer testing and supplementation for a fee. Has anyone had any experience with either of them? I appreciate any info.
  2. Have just been reading about high copper and testing plasma ceruloplasmin in regard to OCD symptoms. I'm wondering if anyone has a doctor who has ordered a copper or ceruloplasmin test, and if so which one... hair or blood test? My 10-year-old DS has PANDAS OCD. On reading about treatments to reduce copper levels (if he would have one) it seems that symptoms can become worse with zinc if it isn't replaced just right. I have read about 2 doctors on the Internet who offer testing and supplementation for a fee. Has anyone had any experience with either of them? I appreciate any info.
  3. Here's a link to a study "High ceruloplasmin levels are associated with obsessive compulsive disorder: a case control study" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2596773/ I would be interested in hearing from others who have had this tested in their children, and the results. Please keep me posted! We are in SW Florida. I don't know that our ped would order it. Where is this doctor? Sounds like a keeper!!
  4. My DS has huge fear of needles, but the blood draw was worse than the LP for him. The NIH had the whole team (5) people in there for the LP. They are professional with these kids! They numbed the area, but no anesthesia. They let him continue his game on the xbox and that seemed to keep him occupied enough to do the proceedure. Of course I couldn't be in the room while they did it so I have to take their word on it. :-) I am in agreement though that it seems a little much for a folate level... I was just reading on hair testing for tissue mineral/nutrients though I don't know much about it yet.
  5. Lor

    New to PANDAS PLEASE Advise us!

    I second DeterminedMom regarding the steroids. I spoke with many LLMD's in the past and they all said "never use steroids unless it's to save your life". They said that 'if you have an active infection and take steroids the steroids allow the bacteria to take over and prevent the body from fighting.' If you're considering the study @ NIH, call and talk with Dr. G regarding any medications that might exclude your DS. He can also email you the 39 page protocol. I carry a copy with me to all doctors appts. He has been very patient and helpful in talking with any of the pediatricians that I have asked him to call. I am taking my DS to the NIH in 2 weeks (sooner than I could get into see some neurologists and/or pediatricians!) and I just started conversation with them the end of March. They were going to get us on the 16th, but we couldn't go. (My DS developed sudden-onset OCD Feb 10th, and it exploded on March 23rd.) Luckily for us the neurologist in SW Florida that I was able to get a cancellation appointment with, was knowledgable about PANDAS and the study! Good luck to you and your DS. Hugs.
  6. Lor

    Update on IVIG study

    My 9-year-old son is going to participate in the IVIG study at NIH. I'm hoping to connect with other parents who have taken their children there or plan to. Please contact me if you have any personal knowledge.
  7. I'm in desperate need of a pediatrician in SW Florida who understands PANDAS/PANS and will prescribe ABX. We live between Ft. Myers and Naples. Dr. Distasio (pediatrician) referred us to a neurologist. Dr. Distasio is not educated on PANDAS/PANS and does not believe in prophylactic antibiotics. I couldn't get an appointment with a neurologist in the area in less than 6 weeks. I finally got in with a pediatric neurologist, Dr. Osterman, who had a cancelation, and he diagnosed my 9-year-old son with PANDAS but neither doctor will prescribe antibiotics! My son meets the criteria to be in the NIH clinical study for IVIG, but could be excluded b/c I can't find a doctor to prescribe the prophylactic antibiotics. Please let me know of any pediatricians in the area who are familiar with the condition and treatment of PANDAS/PANS. My son's 10 day course of amoxicillin runs out on Sunday. It has helped to lessen my son's sudden-onset OCD and I'm not looking forward to an increase!
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