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  1. We've been on three different antifungals, and probiotic (Florastor)- what are you taking for a prebiotic? We are not doing very well in getting rid of the silly, yeasty behavior- as well as the unfocused, ADHD type behavior. I'm seriously considering starting GPAS diet int first week in January.....really tired of all the special diet stuff and would like to heal our DS and his gut once and for all.
  2. The TICS started about 3 days before school, becoming more noticeable the day before school started. We took away his DSI for the last 48 hours and the TIC's are actually not as pronounced - I think we're on to something here. We told him that we believe the DSI was causing the TIC - it wasn't met with a standing ovation, but amazingly he understands and accepts that he can't play video games for a long time (if ever) but will be allowed to take pictures with the DSI and practice recording videos. Since he loves to play with this feature it actually went pretty well.
  3. Our son is currently on treatment ABX- has been for a few months. Every time we start to take him off he gets sick and then he starts having mental issues. We took him off his meds for 2 days for blood work the beginning of May and he starting Tic's vocally this was made much worse by our general ped putting him on Straterra. It made him crazy! We ended up having to place him in a locked facility for 6 days - so to have him so much better and to start seeing TIC's, and changing into facial TIC's has me worried. We don't want to go back to where we were a few months ago. Our Dr. has him on
  4. Our son started facial TIC's two days ago. At first we weren't sure if that was what we were seeing, but today it was definite. Our son will suddenly start winking one or both eyes and tells us that he can't help it. I've been racking my brain to think if he's been exposed to any sick people, or what could possibly be going on, as well as what we can do to stop the latest TIC (usually his TICS are verbal). But the more I think about it, the more I think it could be a result of being on a high dose of Motrin 3 times a day for the previous 10 days. The TICS didn’t start until about day 8 wh
  5. We've used CST for several years now and have experienced some good results. CST has helped to CALM our son down and help keep him more in balance. There was a time a few years ago when we were going to our CST therapist 1-2 times a week to help stabilize our son. Now we go every few months, more for a quick tune-up.
  6. Our son is 9. His favorite grandmother is coming tomorrow at noon - she'll be here for a few days, I think we are all counting the hours! No- we haven't tried risperdal. Sounds like we may have to consider it.
  7. Our son started flairing about 3-4 weeks ago and has really hit a bad place. He had a light case of the H1N1 virus in late March. He started coughing after being sick to his stomach and missing two days of school. He was only sick to his stomach twice, and then went into a slight sore throat and coughing. I took him to the Dr. to check for possible strep as he'd just switched ABX and I had some concerns when he started coughing and complaining of a sore throat. Our ped and I were actually doing the happy dance as a positive H1N1 virus meant that his December IVIG was working pretty well- a
  8. We're pretty new in our healing journey as well. I recently read Saving Sammy and it gave me great hope. If you haven't read it, please read it, it will help you!
  9. Our son just had the H1 flu- funny we- the ped and I were actually gloriously happy that it was the flu. He had a mild case she almost didn't test but did just for giggles- so glad she did. When he started coughing and complaining of a sore throat it got me concerned. We've definitely been seeing some flares. I've been going crazy with bleach on every surface as well- don't want the rest of us to get this awful flu.
  10. It's always a good question, was PANDAS, PANS caused by vaccinations? Our son was adopted from Russia. We signed papers when adopting him (via Homeland Security) stating that we would vaccinate our child. We vaccinated him and it wasn't until many years later when doing genetic testing that our DAN doctor advised that our son had a genetic mutation that made it difficult for him to process toxins. He advised that our son is a child that NEVER should've been vaccinated. And he was vaccinated in Russia and in the US. Doctors since then have advised us that our child was poisoned not once but twi
  11. I'd love to hear if there is anyone on the forum that has used this supplement and if they've had any success with Anatabloc. Our son is on a mixture of homeopathic supplements and his antibiotics and if we can remove some of the supplements it would be awesome - we just want to be sure it's the right thing to do. However- the doctor that phoned me about this supplement is using it on her own family and since she is the amazing doctor that helped us get a diagnosis of PANDAS I tend to listen carefully to anything she tells me.And she checked with a pediatric infectious disease doctor that work
  12. Exactly what I'm thinking. If we can find something to reduce the inflammation with fewer side effects that is a natural prednisone- wow- sounds great. I'm hoping that Dr. T gets back to me pretty quickly with positive news to go forward.
  13. Our of our doctors phoned me this weekend to tell me that she and the infectious disease doctor on her team did not recommend using Natrexzone (sp) as it blocks the receptor sites and in case of need for surgery, etc. our son would be in horrific pain as they could not give him anything for pain. She was very excited to tell me about a natural product that is 4x stronger than Celebrex and helps reduce inflammation. Has anyone heard our used Anatabloc? She advised that it has no side effects and is basically natural prednisone. I have an e-mail into Dr. T (NJ) to get his opinion- but me
  14. thenmama thank you so much for a copy of your letter! Very nice explanation. I've even thought of calling the parents individually as the school has been such a pain- but the thought of making 25 phone calls has not put me in a good mood. And your letter is perfect! Explains it nicely without being a germ-a-phob or having people think that their child can some how "catch" PANDAS.
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