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  1. So my diagnosis is autoimmune encephalitis. I was only approved for 5 months of ivig then I lose my insurance because of my age. It's been 5 months and it hasn't helped. It did help the dysautonomia which is believe to be autoimmune but that's about it. My bladder, ocd, and fatigue continue to get worse and I am getting more disabled and frustrated. The only people who will see me locally about ocd are psychiatrists, I recently saw one and he dismissed all my diseases and treated me like a healthy person. His plan was to put me in psychiatric inpatient, detox me off all my sleep medications be
  2. So over the past couple of months we worked really hard and ivig was approved for the diagnosis of autoimmune encephalitis. I had to go back up to NYU for a week inpatient, and it was the hardest thing I've EVER DONE because of how sick I am, how bad my bladder is, and how bad the ocd is. I came home expecting to get back to ivig but there is a HUGE HICCUP. I am only approved for ivig at one of the local hospitals (the main one where my mom works) but we cannot find a doctor to manage and oversee treatment and any potential side effects, even though I tolerated ivig better than any medication
  3. For our DS, we are considering IVIG and looking for Doctors who will be willling to prescribe this. We are in the Northern VA area. Any advice/recommendations will be much appreciated.
  4. My daughter had her first episode with PANDAS in 2010. We were lucky and had IVIG. However, the insurance company stopped paying, and we stopped the treatment. Fast-forward to this year. We have a new insurance company and they are paying for the IVIG. We have had 7 treatments. Usually she would have a reaction that would include near-rage to just irritability. This time...NOTHING. From what I understand this is an awesome sign. We had been seeing improvements in her the past 2 moths. The thing I think made all the difference is that her Lyme is being treated and the treatment seems
  5. I really did not understand all the symptoms of Rhumatic fever until I read these 2 research articles. My son has trouble with tremors and I now understand why voluntary momements can make it worse. The second article talks about the snips of inflammation. When I ran my son's 23 and me results the Livewello site these snips showed up as homozygous. My son will be having his 3rd LD IVIG treatment this next week. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002660/ http://www.annalspc.com/article.asp?issn=0974-2069;year=2011;volume=4;issue=1;spage=13;epage=21;aulast=Guilherme
  6. HI Everyone, I wanted to share something that I believe has really helped my teenage son. During a flare he gets intrusive thoughts (and in a non-functioning fog), can't sleep, urinates frequently and has one tic. Out of a flare, he doesn't have these symptoms. We just finished IVIG about 8 weeks ago (and he had a 2 week flare in there). . Motrin and Tylenol (and to some extent the one time with did prednisone) don't seem to help during a flare ... I think those antibodies have reared their ugly heads and it takes 2-4 weeks to go down. However......good news and want to share it wit
  7. This last week my son caught strep throat again while on an antibiotic. The first time happened back in January. With some recent testing, some doctors are begining to suspect that my son had rheumatic fever when he was young. This testing is being done through some research studies and shows these antibodies have affected the heart. My son has also had testing in the past that showed elevated Anti- Dnase B Strep antibodies. Which I think this means he has had past infections in the past. I was told that it was not normal to be getting strep while on an antibiotic. So my son is going to gettin
  8. I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Dig
  9. My ds11 was diagnosed with PANDAS last december by dr.L. He has had anxiety and learning disabilities since 3. And when we started SSRI (at 5) we saw ADHD. We did IVIG this november when he started hurting himself in school (academics and social situations-a trigger). Since IVIG he is not able to go to school and its very hard for him to leave the house (raging, crying, getting "stuck"). Dr. L recommends PEX (she did not order cunningham test at time of diagnosis, his Lyme is negative, but high mycoplasma). We will be paying out of pocket ($27,000). Does anyone have a similar story where PEX
  10. I am asking this question because I am wondering how helpful IVIG or PEX could be? I'm also curious what types of symptoms that your child was experiencing before doing either one of these treatments. My son has memory issues, brain fog, vocal tics, daily headache, scalp pain, tremors, unable to stand. walk, or exercise due to tremors. I want to know if these symptoms can be caused by the brain antibodies that show up highly likely on the Cunningham Panel or could the Mycoplasma P be causing these or is it a combination of everything? I also want to know if either of these treatments
  11. Hello all, it has been a long time since I have visited this forum. We have been very blessed. After 7 years of battling tics and PANDAS with several IVIG doses, Thomas "grew out of it" when he started having signs of oncoming puberty. Many thanks to those on this forum that helped me through one of the darkest periods of my life. Now, I am helping a dear friend whose daughter has been diagnosed with PANDAS primarily with OCD symptoms. She is getting better after PEX and 2 doses of IVIG. The first was in Chicago and the second in our local hospital. Here is the problem. This fa
  12. Hi Just wondering for those in the last 3 years -- how often have you done IVIG and at what dose? How old was your child and what was your success? My son appeared to be responding but at 4 weeks he had an exacerbation. I know Dr. K usually thinks 12 weeks but curious your perspective Thanks!
  13. What causes low IgA? My son has had his checked several times. He is not deficient. His last test showed he was at 56 and the range is 71-263. I've also been told when someone has low IgA that IVIG may not be an option. What is the reasoning behind this. I've tried to find research but I'm coming up empty handed. In all his testing, his IgA has never shown to be in a normal range. My son's cardiologist is considering doing a low dosage of IVIG to see if it would help his low blood pressure and get rid of the antibodies. However, he has held off on this treatment because the Bixan seems to
  14. Our dd age 5 1/2 is two weeks post ivig. We have not been one of the people who saw an immediate improvement. In fact, we saw a big flare in PANS symptoms about 2-3 days post ivig. I'm glad that we we had heard from other parents ( not doctors) that this could happen. Based on how bad the flare was, I was terrified, but she recovered very very quickly given the severity of the symptoms. She is doing ok now, but not sleeping at all. We have had our fare share of sleep problems like most of you probably have too. Usually though the sleep problems occur in a flare and now that her day time sympto
  15. Someone was very kind enough to give me some names for ivig advocates from this forum, thank-you, however I have not heard back from them after emailing (they may be booked, busy). Thought I'd ask and see what other names might be suggested. I have read some on the jennifer jaff center but they don't seem to do advocacy just give information. Right now the diagnosis is clinical encephalitis with primary auto-immunity, along with secondary immunodeficiency, POTS, IC, etc; severe psychiatric problems that are resistant to both medication and ECT. We have not received results back from L
  16. My ivig was initially approved then cancelled last minute. The first appeal was denied. My neurologist and an RN are heading up everything, providing all the necessary documentation, writing the letters, and my neuro plans on having a peer to peer phone review. He provided all their research including latest studies. BUT 2 days ago I got a letter from insurance stating that they will not approve unless it's : PID or ITP - those are the ONLY 2 disorders they will approve for according to this letter. We will now have to work on 2nd appeal. Some lady from insurance said maybe I can tak
  17. anyone know of any research on IVIG dosages for PANS/autoimmune?
  18. hi all, I am new to the group, my son is 13, original autism diagnosis,then lyme and coinfections then PANS/encephalitis. This past 6 months have been for him and our family and nothing that has previously pulled him out of a flair is working. I am desperately trying to get him IVIG and find the right protocol. Have apt at Stanford in a few days, wondering if anyone can recommend a good doc in California or have experience with getting ivig with Stanford immunology dept? thank you deborah
  19. Hello, we just did our first HD IVIG. Our main issues are tics and intrusive thoughts. For those who have done IVIG, if it is going to help, how long before you see any results? Especially interested in knowing if you've seen help in reduction or elimination of tics. Thank you!!
  20. Hello. My dd is finally scheduled for her first IVIG this week after 11 months of waiting. As we near the date, her symptoms are exploding - tics and intrusive thoughts. She doesn't seem to be sick so I don't think she has caught anything. Best I can guess is that she is just super anxious about IVIG. I was wondering if anyone else has seen this in their kids before? Thanks in advance -
  21. Hi all my 6 year old son has been diagnosed, i think...with pandas/pans. an explosion of symptoms began early summer. we went on a family vacation and everything was a level 10 out of 10. He was licking everything, biting objects, looking at fingers lined up, asking questions multiple times, concerned about his eating area, defiant, hyperactive, very angry and moody, and extremely anxious about being alone. We called his ped multiple times while we were gone, and the nurse just tried to say you're on vacation, maybe he's just adjusting. we knew something was very wrong. we saw her again when
  22. Hello all, I am fairly new here (but unfortunately not new to PANDAS) Tomorrow we will be giving my 9 y.o. (ADHD, ODD, OCD) son his first IVIG and I need a little hand holding/moral support. I am so nervous and would love to hear any success stories out there. Also, we have him on lots of supplements as well as 2 abx (Azithromycin and a Cephalasporin). I understand that a common side effect is naseau and vomiting. I am assuming that for the next several days we should hold off on supplements (even the ones that help with his huge YEAST problem from the abx??) Any thoughts here? Al
  23. I just this weekend read a book that some of you may find very interesting. I don't even know how I found it on my Nook but I am so glad that I did! The book is Brain on Fire-My Month of Madness by Susannah Cahalan. It is a memoir written by a 24 yr. old NY Post reporter, a true story, about her medical mystery which turned out to be an adult (and extreme) version of an autoimmune storm similar to PANDAS/PANS resulting in brain inflammation. Started with mild ocd and fast-forwarded into full-blown psychosis and hospitalization. Fortunately, a wonderful doctor from University of Pennsylvan
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