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  1. Has anyone who belongs to UHC gotten approval for IVIg for 2018? We have tried several codes all of which have been denied and appealed. If so, would love to know codes used.
  2. Hi folks, My son has PANS with very high Cam-KII, but no anti-strep antibodies. It's now been over 7 months now since his symptom onset, and he's no better; a brilliant HS Junior unable to attend school. We've exhausted non-IVIG medical management, so we've been recommended high-dose IVIG+prednisone. How does a doctor (or I) persuade an insurance company that this is a rational, effective treatment, when all the (few) studies are on PANDAS, which he does not have? I'd love any advice on how to file a successful application and/or appeal! And, clarification on what is my op
  3. Hi amazing parents, Can anybody in the Boston area give me names of docs in the Boston area who are willing to do IVIG and IV steroids for PANDAS/PANS? Been trying to locate docs that could do this for my dd if necessary and coming up empty. Thank you for any potential suggestions or leads.
  4. I am hoping to get some help making sense of our current flare. My son got PANS when he was three, but he really fell off a cliff two summers ago at age 7. It wasn't until last summer that we began treating it as PANS with Dr. P, and by October had determined mycoplasma and HHV-6 as triggers. Two steroid tapers and 6 months on azithromycin and his infection numbers were down to nothing and he was doing well (making new friends, laughing, his personality back). However, his IgG numbers, which were very low in October, continued to drop. We planned on doing IVIG this summer. In early June he had
  5. Hi guys, I'm very sorry to keep going on. Yes, there is a positive response to the antibiotics, but my step father is very cynical and demeaning and my mum is rather reluctant to fund treatment in the states, grasping at other less likely and unhelpful explanations. Psychological therapy hasn't helped at all through the years, my cognition is in dire straits which has impacted education and occupational opportunity and left me in a state of pure social isolation for the last 8 years! I'm very uncertain of my future now. I have been marginalised and ostracised by my peers, and c
  6. Does anyone have experience with steroid bursts? Did they work for your child?Does anyone know of hospitals that will do IVIG in Washington state?
  7. Hi, new to the forum but have been observing for a few months. I'm in desperate need of any answers possible. My DD first started having severe OCD symptoms at the age of 7 (she's 17 now). I had no idea what caused it or what PANDAS was. Through the years she has been on every SSRI imaginable (which had very little - if any - effect on her OCD symptoms and gave her suicidal thoughts) , been through ERP and CBT, hospitalized, you name it... In late 2015, an immunologist ran several tests and diagnosed her with PANDAS. Along with the OCD and being prone to strep, she also has insomnia and sinus/
  8. It's been awhile since I have been on to given an update on my son. He is doing well and finished a year of plasma exchange treatments in July 2015. His energy levels are much better but he is still on supplements and medications. He has not had any strep infections and still takes penicillin VK 250 mg daily. In addition to his supplements and medications, he also takes the 90 billion Ultimate Flora probiotic for men. My son is 17. He was 13 years old when the Cunningham Panel test was run and antibodies were found in December 2013. He started treatment with high dose antibiotics, then IVIG, a
  9. Hello, My son has been suffering with PANS/PANDAS since age 8. He is now 14. He was diagnosed at age 11 by a PANDAS doctor after a few years of having standard mental health treatment without success. After two years of antibiotics he received IVIG and six week post-IVIG became significantly worse. Our doctor had never seen this before. We called Dr. K. in Chicago who said my son probably still had strep in his tonsils. We were unable to get a doctor to remove his tonsils based on the PANDAS diagnosis alone. One ENT gave him clindamycin which has a history of getting into tonsils better.
  10. Just caught this on our local news minutes ago: http://abc7chicago.com/news/mom-leads-fight-to-force-insurers-to-cover-pandas-treatment/1840146/ I don't know how the State could enforce this bill, should it pass, but I still take it all as good news. The march to acceptance, accessibility to treatment, and affordability of treatment continues!
  11. I've got a few questions: ECP test:do LLMDs think the ECP (eosinophil cationic protein) test is useful to monitor the intensity of babesia infection? Would IVIG invalidate the ECP test, like it would an IgM/IgG assay? treatment:I've picked up prescriptions for Alinia and Malarone for the babesia. What side effects should I expect from one or both? Should I first start one and then the other to separate side effects? Also, kiddo's had Diflucan for 4 days last week. His headache's a bit worse, and he's been feeling blah and very stressed. Could that be a herx reaction? Kiddo thinks it is from
  12. Last year I attended a conference at Brown on PANDAS. An IVIG study done at NIMH was presented and I am curious if anyone has seen any published information on this study. The results presented were not convincing that IVIG was effective in treating PANDAS. Many families are still paying large amounts of money for IVIG and fighting insurance companies. I'd love more information should anyone have found further information connected to this study.I do have the powerpoint but it is too large to attach. I am happy to share it through email.
  13. Here is a very recent article on Sydenham's Chorea. From research, I am learning that children can have relaspes from this until the appropriate treatment is given. Most of the references at the end of this article can be found online for additional reading. My son will be going into the hospital next week and having a central tunneled line. He will also be starting plasma exchange treatments soon afterwards. Our insurance did approve the treatment. I did not realize the damage that strep could do until I started reading articles. My son would never test positive for strep when he was young.
  14. Hi, we were blessed with approved orders for three consecutive HD IVIg events. First was in May and last week we did June. So we'll do July and then drop back to monthly lower dose. My son would be considered early-onset and late diagnosed. I describe him as being sick his entire life and he wasn't diagnosed until he was 12. We don't have a "baseline" that everyone longs to achieve. He has had to grow up in this state of constant fear, anxiety, inattentiveness, dysgraphia, mild OCD, one BAD year (2014) of tics and in his case, lack of verbal expressive speech as verbal apraxia is his
  15. We finally have DS16's Cunningham Panel, IgeneX, and other lab results. Given the elevated CaMKII, there is definitely an autoimmune reaction, but it's not clear to me how intense, and whether any of the pathogens he tests positive to are likely to be the culprits, or if we need to look further. Cunningham panel: test = value (normal range; mean) DRD1 IgG = 500 (500-2,000; 1,056) DRD2L IgG = 4,000 (2,000-8,000; 6,000) LYSO-GM1 = 80 ( 80-320; 147) anti-Tubulin = 1,000 ( 250-1,000; 609) CaMKII = 184 ( 53-130; 95) The Ca++/Calmoudi
  16. My son is 13 and has had PANDAS since age 8. He had IVIG in Oct and is worse now that he had been after 1 year on Azithromycin. He has elevated Anti-GAD. Does anyone know if the Anti-GAD is related to the motor tics? Has anyone's child gotten worse after IVIG with no improvement? Thank you. Eva
  17. Hello We had IVIG done for our DS 10 in mid-October. We are not seeing any difference in his tics - they still exist. He is better when he is well rested and they get bad when he is tired or excited. Overall, there does not seem to have been much of a change. We are coming up to 3 months. He had 2 mg IVIG. How long after IVIG did you see any difference in your child? We are wondering if we should start thinking about PEX and tonsilitis. Thank you,
  18. Hi, I was successful in finding a local doctor to order IVIg through insurance after having done subQ Ig for nearly a full year. We did 1g/kg as opposed to 2g/kg and honestly I'm thankful the doctor didn't want to start out on the higher dose. I can't imagine what 2g/kg would have done to him. During the 11 hour infusion (higher rate is what triggered side effects) we had chilling/shakes and up to 101 fever but other than that it went smoothly (no anaphylaxis), and after we got home he was eating and in good spirits. It was 24 hours later when it knocked him flat on his back with 103 fever
  19. I was relieved and moved to tears today when I got notified that we (finally) got authorization for IVIg therapy through our son's secondary insurance (a Medicaid plan) after our primary commercial PPO denied coverage (based on their medical policy which deems IvIg investigational for PANDAS). I knew it should be covered by the Medicaid plan technically, but you all know how it is... My 45lb ds7 is scheduled for day one next Monday followed by a second day of infusion the following week at our children's hospital (outpatient). Any tips and advice? Thanks, Sirena
  20. Hello, There is an article in the Fall 2015 issue of the trade magazine "Biosupply Trends" that summarizes PANDAS/PANS/CANS and provides highlights of some small studies that looked at efficacy of tonsil/adenoid removal versus antibiotic treatment. Interesting. Jump to page 48. http://www.bstquarterly.com/emagazine/currentissue/
  21. My DS15 had his first IVIG 3.5 weeks ago. We saw no results except a terrible headache for 4 days. His second one is scheduled for tomorrow. I feel that in the last 2 weeks he has actually regressed back to the early months of his diagnosis - his eyes are really dilated again. His chorea movements are coming back. The suicidal talk remerged and I am having to sit with him to sleep again! We fought so hard to get IVIG covered by insurance but it was supposed to help!! Not make things worse!! Has anyone experienced a regression first after IVIG and then success?? We had such unbelie
  22. Our 11 year old dd has been out of school all year. Almost a year in, she remains positive for Lyme, Strep (asymptomatic), Mycoplasma, Coxsackie, and HHV6 along with a highly elevated IgM though she has been thoroughly tested for allergies all of which are negative. All this despite 6 months worth of everything from Ceftin to Biaxin, to Doxycilin, to Levaquin and other antibiotics as well as a small store;'s worth of supplements and homeopathic support.. She has been diagnosed with encephalopathy caused by an autoimmune response to the various antibodies. We have seen Dr T and are now with
  23. How long (days, weeks) did you continue Benadryl, Tylenol or Ibuprofen post IVIG? (Apologies, I got tired of searching all the way back on forum to 2012 and didn't want to bump and old post.) Thanks! ~Tracy
  24. We are finally going to be getting IVIG next week with Dr. L. I am wondering how long you kept your child out of school after the infusion, and if so for how long. I am still waiting to hear back from dr.'s office with regards to some questions about the upcoming procedure. Also, within even your own household, did you keep them somewhat secluded? I am worried with our families' strep and illness history that my other 2 children might pass something along. I know we can not keep them in a bubble, but just wondering how you all went about it. And any suggestions regarding first IVIG are a
  25. We personally didn't have any luck with the extremely costly IVIG for our dd with PANDAS/PANS. I've read several cases of kids getting sick months after IVIG and ending up in the same or worse place as before IVIG. My question - is IVIG rather hyped on here - has anyone seen any lasting affect without having to do another one? Are the success stories all coming from what Dr. K is telling people, or are people actually seeing success (WITHOUT more IVIG treatments.) Thanks.
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