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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 smoothies, so I was able to put Vega One powder, an all nutrition, not just protein, in one powder, into a drink for her. And then after the IVIg treatment, one of the first changes was eating habits. Was wonderful to see her interested and will to eat.
  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. My dd improved so much after IVIg, but she still takes an SSRI. We tried to wean her off of it. I finally came to the conclusion that if she is on that for years straight, if it helps her, then so be it. I wish you the best in getting relief for the inflammation, behaviors, and I really hope you can find a doctor, first of all to get the right combo of abx( and steroids, if needed) and then who will help set up IVIg if that is warranted, which to this mom, sounds like it is. All the best--
  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.) There is SO much great information on this forum. It can be very overwhelming, but I learned so much from people here, including where to find the PANDAS doc that we see. There is so much to consider, including doctors, testing, medications, supplements, diet, and counseling. You are wise to question and look for ways to help your children and your family. It feels like a lot of work, and it is! But if you can get some help, you all will benefit. I would start by either requesting strep tests, or by looking for a doctor familiar with PANS and go from there. Good luck to you!! I wish you well.
  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 pants off me! I hauled her in for strep test, but rapid and culture swabs came back negative and the blood test showed titers within normal range. Then I've been hearing of other children her age (just turned 9) who have been having lots of weird fears, especially at bedtime and sleeping with their parents for part of the night, just like her. So maybe she's just going through a phase of some kind. I certainly hope that's it! In the meantime, I've been giving her supplements to help with nerves and immune system. Her wholistic pediatrician suggested checking adrenals, so I will do that soon (first step is taking temps for several days). We've done some energy work, including BodyTalk and Emotional Freedom Technique (EFT is a tapping technique). Both of those were helpful. We now tap every night. Yesterday she had a session with big sister's psychologist. The dr. taught her about how to treat her fears. It went well. So, I'm hopeful my youngest daughter does not have PANDAS. But you can be sure I will be doing all I can to keep an eye on her and taking care of her health. I want to be far ahead in the game if the second child needs help. It took too long to learn what we needed to help big sister. ...One more thing, that's been going through my head for months now: the CDC lists PANS as a rare disease. I personally do not think it is rare at all. I know so many children in my town who have had strep, and at least one with lyme and mono, who experience behaviors that seem PANS to me, just not so severe. I think we might discover down the road that it is a spectrum. But right now it seems to be diagnosed only if it is severe. Just my thoughts there.......So I will be vigilant with my kiddo. Cara, all the best to you and your boys!!! Wishing you all healing and lasting good health!
  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 pushing those fluids. She was on high fluids for a week. When she went back to school, I sent her with one or two drinks per day for a week and talked with her teachers about allowing her to have them to prevent headache. They were very cooperative and my daughter did not get any more bad headaches...Some initial signs following ivig that there was some progress included her willingness to go downstairs by herself (which previously she was scared to do) and some increased independence. However, there was not a lot of progress within the first four months. After that, the progress became rapid. We are 10 months post ivig and she is doing so well. Not 100%, but probably 95%. She and our family are so different than we were a year ago. We are so grateful. I wish you the best with your son! I hope the procedure goes smoothly and that ivig does for him what it did for my daughter. Blessings!
  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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