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lulu4 last won the day on March 4 2014

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  1. WorriedMama and Newfie, I hope you both already received the information you needed to contact Dr. L., but in case you didn't. She moved her offices to Washington, D.C. a couple years ago and the contact info from the beginning of this thread in 2010 would be different. She was our doctor. She really helped us. Google her, and the information for Latimer Neurology Center should come up with her contact information Good luck
  2. Bttrfly1, when my dd had a flare long after IVIg, we did use ibuprofen but also Dr. gave antibiotics course. Helped within a day or two. moutainmom, in answer to your question at the top of this post, I believe IVIg saved my daughter's life. Her recovery took a while, but she is living a normal life now. She just graduated from high school at the top of her class. I'm so thankful for that treatment giving her her life back I believe you posted on another thread that restricted eating is one of the symptoms that you deal with? We were fortunate that during that time our dd would drink
  3. If you are worried about the ibuprofen, an alternative is turmeric, as one person mentioned above. I buy turmeric capsules. Then I take off the top part of the capsule, tap out the turmeric that's in that small cap, and refill it with ground black pepper. Then I put the pepper filled cap back on the turmeric capsule. Black pepper with the turmeric has been found to make the turmeric many times more effective at fighting inflammation. If your son would take this, I would give it 1-2x/day. Also, giving during a meal that also includes some olive oil can increase the digestibility, I believe
  4. I agree with dcmom. sounds to me like you need something to actually get at the autoimmunity. Could IVig be appropriate for your child? You mentioned seeing a specialist -- what kind?
  5. When our doc recommended the treatment, I did not understand at first that there are different medicines and different protocols for the IVig to treat PANDAS. We just went along with the doctor and I am so glad that the treatment for our DD included the same medicine and protocol that was being followed in the NIH study. She received a 2 day long IVig of Gamunex-C. Once. We are hoping that is all she will ever have to have. She had the procedure one year ago and is doing well. Good luck with your son.
  6. tattoomom, I can not find anything published on it yet. Perhaps my comment should have said, "I hear the improvement rate is high." My comment was based on a statement a doctor made to me during a conversation months ago. The doc said they heard the study results were so statistically significantly positive that the study didn't need to accept any more patients. The study was still ongoing. I too am looking forward to the published results. I do not know when the study wraps up conclusively and will be published.
  7. If I remember correctly, I have read in some threads on here references to a list of PANS doctors on this site. Since I am not technically savvy, and my attempts at a search have not turned up anything, could someone please instruct on how to find the list of doctors treating PANS in the U.S., if there is a list on ACN? Thank you!!!!
  8. Do you already have a PANS doctor? Ask what he/she knows about the different protocols. My dd goes to Dr. L., who uses the same protocol as in the study done at NIH last year. It is high dose but usually a only a one time procedure. The improvement rate is high. I didn't know until well after her IVig procedure that there are different protocols. It can be quite confusing. We have seen a lot of improvement over the course of 11 months. We are very grateful. Good luck!
  9. Dr. L. had us test our dd for strep, lyme, and myco. Our daughter had only strep, and Dr. L.'s treatment has been effective. The doctor did comment to me at one visit how she hates lyme, and I got the impression that she either treats patients with lyme in consultation with an LLMD, or refers them on.
  10. Nicklemama, I see now that this occurred in September, but your outreach sounds like it was fantastic. Kudos to you and Kristin for taking that on. I am still trying to figure out the best way to move forward to helping others now that my dd is doing so much better. You are an inspiration, and every doc you influenced and educated will be able to help that many more children/families. Way to go, ladies! Are you finding that other outreach opportunities are cropping up?
  11. Pola, so sorry to hear of the frustration and anxiety that you are feeling. I've been there. It sounds to me like it would be worth it to investigate further what is happening with your children. If your daughter had tonsillitis often before, that's a red flag. Has she been tested for strep? And your younger daughter was on antibiotic for a chronic cough; has she been tested for anything? It sounds to me like it is worth it to get them tested (and always request the test results be given to you, so you can keep your own records, especially if you end up going to different docs in the future.)
  12. I can certainly relate to your situation as well. There are times when my non PANDAS younger daughter has some behaviors that are like her older PANDAS sister. You can't help but wonder if this child also has it. Even if it is much milder. You also can't help but wonder if some of the behaviors are learned. And I think with everything she saw, heard and experienced during the 1 and 1/2 years that her sister was severe, I also think she has a certain PTSD response too. But when she seemed to get very irrational and irate a few weeks ago, and mentioned a sore throat, jeepers, it scared the pant
  13. We use Klaire Labs. Ther-biotic Complete Powder is good, but does have strep thermophilus. However, it has 100 billion cfu's (a lot of probiotics seem to have 10 billion or less), 12 different strains, and was recommended by our integrative pediatrician. I switched to Ther-biotic Factor 6 formula for a while because it doesn't have the s. thermophilus.KlaireLabs have other formulas as well. My daughter is doing much better after IVig, so we are going to go back to the Complete Powder, which she prefers, and see how she does with that. Good luck!
  14. Matter of fact attitude and calm reassurance helped our daughter (12 yo) through her fear. Lots and lots of liquid is critical. Yes, start that liquid a day or so before, and keep pushing liquids for days afterwards! Our daughter wasn't crazy about Gatorade, but did drink a few, but drank a lot of LifeWater. She probably had about 6 bottles per day during the 2 day procedure. The following day she slowed down a bit and ended up with a horrible headache. I don't really subscribe to the headache is a good sign thought. The dr. increased her pain meds for 24 hours and we went right back to pushin
  15. It can depend on what part of the country you live in as well. Some abx are more effective in certain geographical regions. Amazing stuff. I wonder how many docs know that. Our PANDAS specialist told us.
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