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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 optimal role? The MDs aren't jumping up to apply to the insurance, perhaps having been refused before. How can I help the MDs write a successful letter, given that it's not easy/pleasant for MDs either. Given DS16's high Cam-KII activation levels, autoimmune encephalitis seems a completely rational Dx, though his brain MRI was essentially negative, and (a) I don't even know if the Cunningham Panel test is accepted as evidence for autoimmune encephalitis, much less if it would be sufficient for Anthem BCBS to accept the Dx, ( we don't know the specific anti-neuronal antibody that causes his Cam-KII activation, and © there's still the matter of showing that IVIG is a necessary and rational treatment, even as a 3rd line Tx. I can easily search PubMed, read the journal articles, but so far I haven't found any trials or even case series of IVIG for PANS or (nonspecific) autoimmune encephalitis. Have I missed even prospective or retrospective case series of IVIG / plasmaphresis for (nonspecific) autoimmune encephalitis. (The only studies I've found were for the potentially fatal NMDAR-encephalitis, or things like Guillain-Barre syndrome.) Still, many of you seem to have persuaded the insurance companies effectively. How? Thanks! wisdom_seeker
  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 a tick bite with a bulls-eye rash and began treatment that day for Lyme. Unfortunately, he has been declining as the summer has gone on. He did two weeks on doxy, a week and a half off before we realized he was still being affected then two weeks on Ceftin. Last week he became very aggressive which had not happened since two years ago so we started a prednisolone taper. We were also just denied IVIG coverage by our insurance and are planning on paying for it ourselves. He just switched from Ceftin to Rifampin three days ago in case he has bartonella. On top of all that, he was stung four times by wasps last week (can that cause flaring?) which has restarted a major bee/hornet phobia and has him scared of being outside. He also just started saying he hates the feel of water which takes away our only activity this summer of swimming. He is scared of everything, says he "doesn't feel right" and has started saying he wants to "go home" which in the past has meant heaven. His sister also has an open sore on her bottom which could be staph (we are having it looked at today). Can this be causing the flare? I am a wreck trying to trouble shoot and keep my own mental health strong. I am anxious to do IVIG as soon as possible to alleviate his suffering and give him time at home before school starts, but I wonder if we have all the possible infections covered. Any thoughts? I would also love advice about preparing for IVIG. Did it help? How did you keep your child calm? Do they need other medications at the same time to make it more effective? Any questions I should be asking of his doctor? Thank you for your advice!
  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 coping alone with no support at all - having to pick myself every time - has been a mind bending experience. This post is just to ask at opportunities to raise funds, or if anyone could provide any pointers. These last 8 years have really been a humiliating experience. :/ I don't think I have the strength to go much longer. Thank you for taking the time to read, I only wish I had a more understanding support network in reality...
  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/breathing problems. The only advice the immunologist gave was for us to get her tonsils and adenoids removed, which we did, and DD got strep 4 times within six months of the surgery. For the past two years, I've been going through doctors trying to convince one of them that DD needs long term antibiotics (we live in a very strictly textbook, narrow-minded location). We have an appointment with a new one this week with a reputation of being progressive and his secretary told me he is familiar with PANDAS. I also recently contacted Dr. K in Chicago who told me DD would most likely benefit from IVIG. Do any of you have experience with IVIG or any words of advice? Did it provide any relief of OCD symptoms? I've read mixed reviews but am willing to try anything at this point. I'm also going to see if this new doctor can test her for Lyme. Another concern I have is that God forbid her PANDAS may have gone too long untreated and she's suffering from irreversible brain damage Sorry for such a big post I am just at loss at what to do here.
  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, and then went on to Plasma Exchange. My son has been on antibiotics since December 2013. What I am wondering about is how long is too long to stay on antibiotics? I am afraid he could have a relapse if taken off. His doctor wants to leave him on the antibiotics because of a possible relapse. Are any of you dealing with this situation? Would love to know your opinions.
  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. His PANDAS doctor then ordered the Cunninham Panel which was negative. My son did not want to participate in their study. We were left with returning to conventional neurology for the tourette symptoms and psychiatry for the OCD. A new neurologist/psychiatrist (a conventional mainstream doctor) heard our story and thought we should try the IVIG again. We did a second round and my son improved greatly then after the third round he's like his old self (as much as I can remember him after all these years.) It feels like a miracle to me. Although he's not 100% better it's remarkable enough for everyone in his life to notice. I'm not sure what helped this time. Maybe the clindamycin before the IVIG? Do not give up based on a Cunningham Panel. It is still experimental. I was crying when the doctor told me it was negative and IVIG would not work for my son. I was certain it was PANDAS. They (Cunningham) are still looking for markers and the current panel does not cover all possible markers which is why they ask families to participate in the research to find new markers. If I had turned down the offer for more IVIG based on the other doctor's recommendation from the results of the Cunningham Panel my son would not be on his way back to wholeness today. His tics are almost completely gone after years of severe tics and anxiety is very low. Almost normal. Of course after years of being in the grips of PANDAS my son has much catching up to do with peers. We still have much healing to do. I'm not sure he will ever catch up but at least now he has a chance. Good luck to everyone. Eva
  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 his fears of the impact of a climate-instability-denying, narcissistic, xenophobic, racist, misogynistic and Putin-friendly bully (that's pretty much a quote). He is scared for the world, not just the US. Thus it's hard for me to tell a herx reaction, and whether to add more drugs to the mix.
  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. After he started taking antibiotics this year, he started testing positive for strep on a rapid strep test. He had the titer test back in December that checked for past strep infections and the levels were high. This finally got my doctors attention because I reminded him that my son would never test positive on rapid strep test. So my question to him was "When did my son have these strep infections?" I wish I had known to ask for a strep culture and maybe we would have caught on to this part sooner. Rapid strep test are not very reliable. I really wonder how many strep infections that my son had when he was younger that went untreated. http://www.bioline.org.br/request?pe14052 http://www.unboundmedicine.com/medline/citation/15968928/Treatment_of_Sydenham's_chorea_with_intravenous_immunoglobulin_plasma_exchange_or_prednisone
  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 PANDAS-motor planning issue (that's right - my nearly 13 year old cannot talk but understands everything that is said to him. Years of speech therapy were wasted because, the underlying reason for the apraxia, aka PANDAS, wasn't diagnosed! grrrrr). Although I know when I see improvements in areas, I really don't know what my kid is like when he is well, because he never has been. I really haven't seen anything at all in terms of improvement since the May and June HD IVIgs. I know it can take several weeks so I'm trying to be patient. My question is : Is 12 weeks still the "rule of thumb" on when things may begin to turn around? If that is the case, then Aug will be the 12 week mark from the first HD, or Oct if I count 12 weeks from the July HD. We saw improvement immediately with prednisone, which is what gave Dr. L the impression that he may respond well to HD IVIg. Sometimes I feel like he needs to be on pred in addition to other interventions, but I know why that isn't the greatest idea. We've only done one 10 day burst and then it was yanked away and the improvements went away with it. I have a hard time being apologetic about being "impatient" after waiting so long for a correct diagnosis and then post-diagnosis, the months and months of waiting on doctor appointments, begging for particular treatments and then once obtained, insurance approvals, etc, etc. It's like I've been running a nearly 13 year marathon only to arrive at the starting line of a race where the people from whom I need help crawl at a snails pace. If only everyone had the same sense of intense urgency I have. If he had a treatable disease that is "recognized" by the medical world, I doubt seriously anyone would think it acceptable to wait this long for diagnosis and treatment. I pray that will change for PANDAS soon. Sorry for the rant. I don't do that often but sometimes it feels good to put it out there.
  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++/Calmoudin-dependent protein kinase (CAM KII) activation seems high. But how high is it? Moleculera Lab writes that they now have a database of over 1000 patients, but their attached 2006 paper by Kirvan, Swedo, Snider, Cunningham only shows data on their first 16 PANDAS patients. DS's levels are higher than all but two of those reference kids with acute PANDAS, and almost as high as that in kids with Sydenham's chorea, but is that high enough to impress someone like Swedo or Dr. K? And more importantly, insurance companies to approve IVIG? I'm also fuzzy on how CAMKII activation would acount for the extreme anxiety, multisensory integration, choreiform movements, pessimistic thinking and other symptoms. Causative agents: MDL / IgeneX, stool pathology, etc: The good news is that there's no sign of Lyme or coinfections by ELISA or Western blot. He does have elevated antibodies to some pathogens (EBV, HHV-6, west nile virus, Mycoplasma) but PCR is negative. Does that mean those area all past infections, or simply dormant at the moment? For example, here's Epstein-Barr virus, tested in 11/2011 and 2016 Also tested now through MDL, which give unit-less index values, plus they test for virus fragments by PCR. MDL index 2011 2016 normal (neg <= 0.89, pos >=1.10) EBV EA IgM 0.52 EBV EA IgG 39 41 <100 u/mL 0.48 EBV VCA IgM 4 18 <100 0.09 EBV VCA IgG 1030 H 971 H <100 4.88 EBV EBNA IgM 0.21 EBV EBNA IgG 444 H 510 H < 100 1.83 EBV RT PCR negative OK, how to interpret this? I thought IgM disappears after a few months, not that there are low residual levels. And that IgG ought to drop with increasing years since an infection unless there are reactivations. So: Does a +15% in EBNA and quadrupling in IgM simply show uncertainty in lab results, or that there have been some reactivations since? Since EBV RT PCR is negative, does that mean we need not worry about EBV as a causative agent for his PANS, or simply that there's not been a reactivation the last month? How can there be such a difference between the two labs? I'd assumed the index is simply an absolute value / normal level, which fits the EA IgG, but not the VCA or EBNA values. Similarly, Mycoplasma pneumoniae: 2016 normal MDL index: IgM EIA 78 <770 0.38 IgG EIA 1.21 <0.90 1.43 PCR negative Does this indicate a distant infection? I read that IgM can last up to a few months, so I'm surprised to see any level of IgM. Unless it too can establish a latent intracellular infection, as theorized. Still, there are no smoking guns here. Ditto for HHV-6, West Nile Virus. The only other things that fournd were MARCONS in Dec, and 4+Mucoid Escnarchia coli and 3+ Citrobacter freundi complex in stool parastiology. Where do we go from here?
  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, chilling/shakes, vomiting. I hope this proves to be worth it. Is the first one often wrought with more side effects than subsequent ones? We will be doing monthly as he is hypogammaglobulemia. Could this be die-off (herx)? I'm grateful for hearing of similar experiences. - K
  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 unbelievable success with a high dose prednisone 50mg taper that my DS's immunologist felt very positive about doing IVIG. My son's IVIG dosage is 1mg/1kg over one day. I have questioned our doctor about this dose but he has assured me multiple times that a higher dose would not be more helpful but just make my DS's headache/side effects worse. I would love to hear your experiences. I really need to hear some success stories. Thanks!
  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 Dr B in NY both of whom have been great but we still don't have our girl back. Dr B believes the next step is IVIG but of course insurance turned us down. He had her tested for anti-neuronal anitbodies in an attempt to find something the insurance company would more easily recognize as appropriately treated by IVIG. Sadly/happily (not sure which) the test came back negative. I'm sure we will appeal the original insurance decision but we are very lost about what to do next. We've tried CBT but our dd won't or can't (so hard to tell) participate. Do we save our money and bring her to the Rothman Center instead or go all in on the IVIG? Is anyone aware of a comprehensive treatment center in the northeast? Has anyone else been lost in the wilderness? My wife and I will never quit looking but could really use some fresh ideas...thanks for any help.
  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 appreciated, thanks
  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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