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Kaki's Achievements

  1. The immunosuppressants are hardcore. But, I have wondered about the antimalarial drug, hydroxychloroquine (also has side effects)? It has helped me for lupus symptoms.
  2. Reading the question about how many have tics, made me wonder about Austim. So many of the behaviors I read about here sound like Autism. My daughter was dx with both. She has stimmed since she was a baby. But, I would attribute that to Austim and not the PANDAS. The PANDAS dx came with the sudden onset of OCD/anxiety and Strep.
  3. No tics. But, my daugther is on the Spectrum and stims. She's a hand-flapper and a hopper.
  4. Just got our results back from a stool study: high yeast = Diflucan for three weeks. There was also a low IgA. Can someone tell me what the low IgA means?
  5. My daughter stims. Not a tic though. She has stimmed since she was 6 months old. She hand flaps, hops and crosses one eye. I couldn't do all of that at once if I tried. The good thing is that she has learned that it's not appropriate to do in public. So, now she only does it at home when she thinks noone is looking. I'm very eager to see if the new treatments will have any affect on the stimming.
  6. That makes sense, because so many kids have gut issues. Is it a compounded cream? I've heard of sublingual, but not a topical cream?
  7. Neither, actually. I posted a link in this thread that explains it better than I can.
  8. My son has the same thing! Would you mind sharing dosage/weight for the 5-MTHF (and maybe brand/source too?) Thanks! Here's the link to the brand that was suggested: http://www.thorne.com/Products/Neurological-Support/prd~B129.jsp. They give a good explaintion of the 5-MTHF. Dosage is a good question. She didn't tell me, and I forgot to ask.
  9. According to her doctor, the folic acid to be supplemented in the form of 5-MTHF because of the genetic mutation. From what I've read so far, this is a fairly common mutation. The mutation disrupts the enzyme function that breaks down folic acid into the form that is needed to "fuel the brain." The 5-MTHF form of folic acid is what is used for many subsequent prosseses that "help drive" neurotransmitter function (serotonin & dopamine), methylation, and "protect against too much histamine." Hope this maks sense. I'm still trying to understand it myself.
  10. Thanks for the Valtrex link. Since Ren has been dx with both ASD and PANDAS, I guess her doctor is looking at this from both angles.
  11. I been around and reading your posts. You got me motivated to find a doctor that would treat for PANDAS. I thought we would have to travel hours, but we got lucky and found a local pedatrician, that treats ASD biomedically and treats PANDAS. Two things my daughter, Ren, needs help with. The doctor ran several tests. One of the tests the doc ran was for a C677T mutation on the MTHFR gene. It was postive. Ren also has very high histamine levels. This points to undermethylation and decreased seretonin = OCD/anxiety. She's starting folic acid supplements (5-MTHF specifically). Anyone else familiar with this? My daughter also had elevated mycoplasma titers along with her history of strep and PANDAS, so we are going to do a trial of Zithro. The doc also suggested that we might try Valtrex. That was a new one for me. Has anyone else's doctors suggested an antiviral like Valtrex? These are just a couple of things what came up during the lab reviews. Alot of it I was expecting, but I had never heard of treating for undermethylation or with an antiviral. Love to hear your experiences.
  12. Hi Vickie, I've read that it can be difficult to get in touch with her directly. Would it be better to contact someone in the lab?
  13. We are using Omega Mood. But, it takes 3 tablets a day. And, it's still not the recommended dosage. I wonder why our docs don't prescribe Lovaza. I know it's for cholesterol, but it seems like it could be prescribed off-label. Has anyone looked into Lovaza. I'm going to look into the Omapure too.
  14. I know this has probably been posted a hundred times. But, I can't find it. Can someone give the contact information to request the Cunningham tests? My daughter's been doing worse lately, so I guess now is the time to have the tests done. Thanks!
  15. Thnnks for the cookbook ideas. I'll have to look for them.
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