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  1. Like
    wisdom_seeker got a reaction from tj21 in Help! Strep carrier son infecting PANS sibling   
    The other question is whether you replace his toothbrush (and wash his cup well) before finishing the antibiotics, so that he's not re-infecting himself with the toothbrush?
    So I'm not sure whether a tonsillectomy itself would prevent all strep infections. For example, for my kids, the primary site was sinuses, and all sore throats, ear infections, even pneumonia, were complications of the sinuses. What they needed was sinus surgery to remove the diseased tissue and improve drainage; that's why a tonsillectomy wasn't sufficient to reduce how often they got sick.
    Oh, they also needed to have their sleep apnea discovered and treated! THAT improved their sleep, which improved their immunity, which finally prevented the recurring sinusitis that antibiotics never got rid of for long. (And neither one snored, nor was overweight, both simply were usually tired and crabby and often sick)
    So YMMV, but it's really important to figure out what all is contributing to the bad immunity and/or sources of infection -- consider bad sleep, recurring stress, nutrition, regular re-infections from toothbrushes or another family member (or grandparent, babysitter or dog), etc. Figuring out these other factors will of course also help with fighting Lyme etc.
    Good luck!
  2. Like
    wisdom_seeker reacted to sf_mom in Immune Deficient, PANDAS and Lyme   
    Yes all three of our children have immune deficiencies, PANS, Lyme et al. Only our 7 year DD gets monthly LD IVIG.
    Typically with chronic Lyme deficiencies are common in the IgG 1 and 3 subclasses. All of our children have immune deficiencies in all subclasses inclusive of IgAs and IgMs. Our DD was the most immune deficient with IgAs at 21. She had immediate improvement with IVIG. However, after her 4th monthly IVIG she seemed to be regressing or her immune system finally started to activate by fighting infections and she appeared to be worse. We rotated her antibiotics to address the Lyme and Bartonella "more aggressively" and her recovery has taken off again.
    For us, the antibiotic aspect of treatment was as critical as the IVIG.
    Our children are not fully biologically related (two children were conceived via donor egg). All have similar immune deficiencies and all have gestational Lyme. We feel that the black mold exposure from our prior home was probably adding to the load on their immune system and probably why they had deficiencies well beyond just the 1 and 3 subclasses.
    There are a couple of LLMDs versed at treating with LD IVIG. You might research Dr. Katz from CT. He is a neurologist who treats Lyme et al with LD IVIG and versed at psychiatric presentation.
    Here is one blog post.
  3. Like
    wisdom_seeker reacted to Wombat140 in Anyone know current status of Amy Smith from California?   
    I didn't know you were a member! Ouch, that really does sound like a mess, sorry to hear about that. I hope you've been able to get things somewhat back to normal now at last. Wanted to say thanks for being so thorough and attentive once we did get the appointment arranged. It's such a lovely change to be working with someone who really talks to you, like anyone would innocently expect. We've been knocking our heads against a long line of practitioners who don't definitely acknowledge that you even said anything, or else come back with an answer to a completely different question, or something poker-faced that you can't attach any meaning to at all - it seems an astonishing luxury to be able to hold such a sane, human conversation with Amy and her staff!
    haha EXACTLY, perfectly sums up the kind of chaos you're up against with PANS! and that's why it's so great to be able to work with a nice, helpful person who says "OK, how can we arrange something", rather than making bleeping noises and repeating their previous statement!
  4. Like
    wisdom_seeker reacted to SSS in Anyone know current status of Amy Smith from California?   
    I would like to briefly share:
    Amy Joy Smith worked with my daughter and I over the last 2 years.
    If I spoke to a supplement recommendation and said:
    We tried homeopathy, did not work for us, or,
    my daughter won't take a pill if it's dark green,
    immediately response: no problem, I understand.
    Because she totally understands.
    I could write a whole lot more
    but I will close with
    Thank God for Amy Joy Smith,
    and her depth of knowledge, intelligence, ongoing education,
    blood sweat and tears
    with helping and transforming the lives
    of our children. And adults.
  5. Like
    wisdom_seeker reacted to SSS in Flare from a few acne boils? Or serious seborrheic dermatitis? Lotion Tx?   
    Boils to me, I think MRSA staph. Might want to rule that out (Dr.).
  6. Like
    wisdom_seeker got a reaction from SSS in Help me understand these results   
    Hi SSoda,
    So sorry you had to go through this, and still are. I wouldn't worry about MS, but do trust your instincts and stay away from that MD who didn't even talk to your daughter and dismissed all you said. I had one of those as well. Maddening. I don't think that MS would create all the symptoms you describe. How frustrating that the infection took so long to treat, so many times you were dismissed.
    Only a quick reply, for it's late here.
    IgM antibodies are produced rapidly after an infection as a rapid-strike force, but they disappear within a few months. IgG antibodies are much more precisely specific to the virus/becterium so they take a few weeks to develop. However they typically multi-year or even life-long immunity to that virus (or strain).
    So if you are It means
    IgM+ IgG- early in an infection, (IgG antibodies not yet created)
    IgM+ IgG+ recent infection, or recent re-activation (say chickenpox, or HHV-6)
    IgM- IgG+ an infection in the past (with few controversial exceptions).
    If your daughter was IgM- IgG+ to HHV-6, then that doesn't sound like drug-induced reactivation either does it? And I'm too tired to think clearly about what else it might be, besides PANDAS from one or more infections, plus perhaps drug allergies. Perhaps somebody else will have ideas.
  7. Like
    wisdom_seeker reacted to amyjoy in Anyone know current status of Amy Smith from California?   
    I"m right here. No changes.
    EXCEPT, while I was gone, over the summer, Mike my assistant was also gone. We hired a temporary person who was a friend of someone in the practice just to cover my calls and emails. And it turned out that this person was actually very nice but a total emotional basketcase and so many things fell through the cracks, it was awful and actually scary. At the exact same time 2 people went out on maternity leave and one of the nurses had to leave for personal reasons. Things are fixed now. We are still picking up the pieces and I'm so so sorry for the confusion.
    We also just hired a second person to work with only PANDAS families, and she is fantastic. Her name is Allison and you will love her.
    I'm very sorry this happened, it won't happen again, I promise.
    Sometimes things do go to the phone tree during the day if everyone is on the phone. Mike or Allison will get back to you promptly.
    There is also an internal email that if you send something to will go directly into the electronic medical record. You are free to use it to reach out, its a little weird but here it is:
    Here is my email, you are always welcome to contact me directly: amyjoysmithnp@gmail.com
    Many people do facebook me, in a pinch you can always do that.
    Sorry again, it was a transient issue and you fell into that weird moment, i'm so sorry.
  8. Like
    wisdom_seeker got a reaction from ibcdbwc in Igenex Negative for Lyme?   
    My son also tested negative on Igenex, for Lyme and all co-infections. One band on Western blot; that's it. So they don't all come out positive!
  9. Like
    wisdom_seeker got a reaction from tj21 in Anyone know current status of Amy Smith from California?   
    Hi Wombat,
    I've heard mixed reviews on Dr. Harris, but generally only very positive comments about Amy Smith. She has been knowledgeable, positive, and cost-conscious -- that last one may come from having a PANS kid of her own, and seeing their life savings eaten up by medical treatments. and they work hard to do IVIG as cheaply as possible without the insane mark-up you can get in a hospital. In fact they now set up many IVIGs as in-home procedures, to minimize the cost and max the convenience.
    I certainly can't imagine her yelling at a patient! I've not seen anyone else but her, so I can't comment on that, but I am very picky about my kids' health care professionals, and we're keeping her as part of DS16s team. I have been able to say that he can't tolerate the taste of throat spray X, or doing Y, and she finds an alternative, which I appreciate. And when his CAMKII activation came back very high, she was unequivocal that he'll be a great candidate for IVIG, same as I'd later heard from Dr. T.
    I don't know why you're not getting any response to your phonecall. Mike, the nurse / admin / jack-of-all-trades may not always be available to pick up the phone, but I do get timely responses. I just don't remember if those are to phonecalls or emails. Have you tried contacting Amy through her website? I have to contact them this week as well, so I'll try to send an update with what I find.
  10. Like
    wisdom_seeker got a reaction from GMT111 in Marcons ubiquitous and/or worth treating? references?   
    Any MD can request a MarCONS collection kit and follow the instructions. However you need a doctor who will be careful to keep the swab from contacting the mucus membranes at the front, and pay attention to how deep to go and how much to brush the membrane.
    We had it done by a Lyme/PANS doctor. I have never had a general ENT or internist suggest these. It's not a term used generally, and no consensus that this is important, so 3-week nasal cultures are not standard. But it's not completely crazy.
    Here's more information on MarCoNS, the theory, and a few references that gave it (to me) enough plausibility, though they don't at all prove that MarCoNS are the culprits in PANS.
    MarCoNS is a name used by Dr. Shoemaker to describe slow-growing multi-drug-resistant COag-Negative Staph found deep in the nasal cavity, which he believes cause chronic illness. A prominent member is S. Epidermis, which is found everywhere on our skin, outer part of the nostrils, esp. armpits -- and is considered to be benign except when it colonizes an indwelling "foreign" object, such as a catheter, mesh, implant.
    Since everyone has S. epidermis and other such "benign" Staph, most regular MDs will likely dismiss this, and treat this as normal flora from the front of the nose or skin. And that since 20%+ of people harbor MRSA, finding multi-drug-resistant Staph is no big deal. The trouble with S.epidermis and other coag-neg staph on mucus membranes that most of these can form a biofilm, and may cause low-grade inflammation, secrete toxins, and trade resistance genes with other species of Staph (such as S. Aureus).
    Dr. Shoemaker is a fringe doctor, not an utter crackpot, but .... he has interesting theories and protocols, but NOT not rigorous studies, no pathology/immunology collaborators, no clinical trials. He is revered in some circles, and reviled by many. Years ago he found mold in buildings as a source of chronic illness. Now he's got a complex protocol for chronic disease that starts with eradicating mold, and includes a bunch of other steps to get at these persistent infections, methylation issues, etc. (I may have it a bit wrong; it's been a few months since I looked him up). (Note: There was a lawsuit against him, which he lost, and was forced to retire from active practice so now he has a company instead. The problem is that there have been no clinical trials of his protocols, nor even carefully done case series to substantiate his theories, e.g., that that nasal MarCONS are associated with marks of inflammation, BBB break-down (even in rats), etc.... I take his pronouncements with a mound of salt. I don't dismiss all he said. But I try to find well-done studies that back what he writes.
    What convinced me that MarCONS are worth treating were two studies. First, a 2010 publication showing that S. epidermis (normally considered to not produce toxins, unlike S Aureus), actually does produce a potent toxin against leukocytes, just not in as large an amount.
    And, second, a more damming article: A study of 30 tissue samples removed during surgery for chronic sinusitis, in which 97% had bacteria, and 23 of 30 had biofilms.
    37% of different strains found were those of Coag-neg S. epidermis.(The next biggest variety was of, E. Coli with 10% of the 62 strains. Of the 62, 58 strains were cultured, and "only" 29% strains were biofilm forming strains. However, 23 of 30 of the deep nasal mucosal samples showed biofilm formation, with destruction of the epithelium, ranging from disarrayed to absent cilia. (Scanning electron microscopes were needed to identify biofilms, which is why that's not a normal test ).
    So, if the MarCoNS are only found on a 3-week culture, they must be slow-growing, and slow-growing staph are often ones enveloped within biofilms, hidden from the body's immune system or antibiotics, but able to release toxins to make their homes more hospitable. That is the logic.
    Lastly, for anyone who wants to go deeper into the effects on local immunity and activation/inflammation, and on the complexity of "what causes" chronic sinusitis,
    PLoS One. 2015 Aug 14;10(8):e0136068. doi: 10.1371/journal.pone.0136068. eCollection 2015. Association of Mucosal Organisms with Patterns of Inflammation in Chronic Rhinosinusitis. Chalermwatanachai T1, Zhang N2, Holtappels G2, Bachert C3. Their conclusion is that it is not any particular set of bacteria, but likely "dysbiosis", an imbalance of the normal set of bacteria that results in an overgrowth of one or a few types, [and thi density is what allows there to be enough to initiate a biofilm]. Which suggests that even a powerful spray like BEG may only be a part of the solution; that one also needs to re-establish a good broad microbiome. But how?? I don't know.  
    Am J Rhinol Allergy. 2012 Mar-Apr;26(2):104-9. doi: 10.2500/ajra.2012.26.3718. Epub 2011 Dec 16. Biofilm formation and Toll-like receptor 2, Toll-like receptor 4, and NF-kappaB expression in sinus tissues of patients with chronic rhinosinusitis. 
    Laryngoscope. 2013 Oct;123(10):2347-59. doi: 10.1002/lary.24066. Epub 2013 Apr 1.
    Use of topical nasal therapies in the management of chronic rhinosinusitis. Wei CC1, Adappa ND, Cohen NA.
  11. Like
    wisdom_seeker got a reaction from jan251 in slow growth   
    For my PANS kids, a completely different cause was chronic sinusitis. + sleep apnea. Neither snored, but neither could quite shake their sinus infections... it's like they were always smoldering, ready for a fresh cold to wake them up.
    It turns out that the deep sleep (stage III, IV) are needed for growth hormones as well as all sorts of memory consolidation, immune system modulation. My kids had apnea/hypopnea episodes 11-27 x / hr, some wheezing, and restless legs from low serum ferritin (<50 is enough to raise the risk of sleep apnea). Together the result was that he kept bopping between brief periods of awakeness and stage I and II sleep. Not a refreshing night's sleep.
    Once treated, their emotional resilience, motivation, attention, and growth all improved. Especially my 2nd one, who at 13 was nowhere near puberty, at ~2nd percentile, and waking 19x/hr. He had had 0% stage III sleep. And kept getting ill. In 8th grade he was mistaken for a 5th grader.
    Once he began using a CPAP his social/emotional growth blossomed, and colds no longer all became bouts of sinusitis. They say it takes months to catch up on the chronic sleep deprivation, but eventually he also entered puberty (in 10th grade), and in 10th and 11th caught up in height.
    He's now around the 50th or 60th percentile. I think it took being on the CPAP (now he wakes ~2/hr), and also getting antibiotics so he wasn't in a constant state of fighting a smoldering sinus infection.
    Your mileage may vary, but it's worth looking at things like the serum ferritin and sleep apnea as well. Especially if you're also seeing ADHD, with yawning or paradoxical hyperactivity (if your kid is small).
  12. Like
    wisdom_seeker got a reaction from jan251 in urgent: preventing a flare from dental extraction?   
    I thought I'd post an update:
    I got kiddo to the dentist, who upon hearing his updated Dx, including IgA and IgG subclass deficiency, decided that he'd rather the extraction be done by an oral surgeon.
    Not because it's technically complex, but to reduce the risk of either infection or an immune flare:
    that an oral surgeon will give a mouth rinse to seriously reduce the oral bacterial load beforehand, can pack the wound with antibiotics, and add a few stitches to close the wound. And perhaps also do the extraction more quickly, with less tissue trauma, which also reduces inflammation....
    He said "I'm a parent too, and this is what I'd feel better about".
    I love our dentist.
  13. Like
    wisdom_seeker reacted to LNN in More help with 23 and Me test results   
    There's no single gene that determines if you're prone to under or over methylation. It's the combo of certain genes - COMT, VDR Taq, MTHFR, MAO are the ones that most influence, but MTTR and others do as well. You may want to PM Rachel for more input on Nutrahacker to see if it would help you determine overall status. I never used them - just figured things out on my own.
    If you have an MTHFR mutation, then you generally do well on methylfolate - which is what Deplin is. But Deplin comes in very high doses only - like 7.5 MG. And this can be too high for some people (and ok for others). When we started using methylfolate, we started with Methylmate B from Holistic Health - a liquid that lets you change doses in very small increments (one drop = 67 MCG - so less than 1/100 of Deplin). My DD only needs 67mcg every other day. More than that makes her moody and angry. If you want to try methylfolate, my advice would be to use Methylmate B and build up to the dose you feel you get the best results from. If this happens to match the Deplin dose, then you can switch to that. But using the liquid will let you dial in without taking a dose that's too large.
  14. Like
    wisdom_seeker reacted to sahm in bizarre tic triggers - ideas, words, sounds   
    I havne't been on these forums in a long time but my son has had tics for 5 years. We have seen a lot of alternative practitioners and I've thought about this a lot. I think your son's situation makes perfect sense to me in terms of certain triggers causing anxiety within his body. The psychological/emotional stress needs to be released somehow and it comes out as tics.
    I don't have a solution for you BUT I would look into tapping / EFT. If he could do tapping about his fears, I wonder if the tics would subside correspondingly. Have you heard about tapping? It is quite powerful and effective.
    I feel for you! Best of luck!
  15. Like
    wisdom_seeker got a reaction from jan251 in Cunningham panel question   
    We're in a similar situation, with the additional quirk that this 16yo doesn't show any strep antibodies at all.
    Aren't all adolescents already supposed to be immune to strep -- that's why PANDAS was defined to be only a childhood-onset illness, right?
    In contrast the Cunningham panel shows:

    DRD1 = 500 [mean 1,056; 500 - 2,000]
    DRD2L = 4000 [mean 6,000; 2,000-8,000]
    LYSO = 80 [ 147; 80- 320]
    Tubulin = 1000 [ 609; 250 -1,000]
    CAMKII = 184 [ 95; 53 - 130]
    So DS was below the mean on all tests except for borderline-high Tubulin .... and yet a Cam-KII almost in the range they see with Sydenham's Choera.
    My uneducated guess is that his PANS is NOT strep triggered and the Cam-KII is picking up the effect of other anti-neuronal antibodies.
  16. Like
    wisdom_seeker got a reaction from ibcdbwc in I want to know the "why's".....   
    Bump. I wish we could pin this, for there's so much wisdom in this thread.
    I love
    Dasu's rant (I can so relate!), ibcdbwc's detailed, heart-breaking (and oh so accurate) description of what a flare is like. Missionmamma's wish that her kid would just go to school, and confusion about why he's not. (Describes our house! DS is brilliant, can crack jokes, play certain videogames, and yet most any schoolwork fills him with terror. I think you two put your finger on why.) the discussion of when/how to suspect and test for Lyme, and, last but not least,
    Albymom's thoughtful description of why she's gone to IVIG + rituximab + cellcept. Interestingly, my son's neurologist just requested rituximab along with IVIG for his first infusion. On recommendation from the PANS clinic, I believe.
    Of course, Insurance denied both. IVIG is "not medically necessary for encephalitis/PANS". Rituxan is investigational for this condition.
    The clinical notes the MD sent along as documentation included mention of his PANS diagnosis, as well as her diagnosis of autoimmune encephalitis, and that's what insurance is now latched onto . Dunno if we can recover from that.
    About the rituximab... I was surprised by the rituximab, so I started reading about it in encephalitides, and the literature I found on anti-NMDA receptor encephalitis also shows better results when rituxan is added early, with suggestions that doctors consider giving the combo as first line treatment. So even though I'm apprehensive, I'd go for it.
    Both in autoimmune encpehalitis and cancer treatments, I believe that aggressive treatment early has the best outcomes. Which is why I keep wondering if we should just stop waiting, pay for the Tx ourselves, and hope to get reimbursement if/when he has a great response.
    As far as this topic, I'll add as well.
    *I* want to know why (or how come)
    ICD-10 still has no diagnostic code for autoimmune encephaitis?
    MDs treating anti-NMDA R encephalitis or other encephalitides are able to order IVIG and/or PEX and rituximab, since most insurance plans don't cover those?
    it appears that MDs for lots of kids on this forum have gotten HD IVIG paid by insurance, even though immune deficiencies are generally only treated with LD IVIG. How do they justify that?
    And, my newest frustration:
    How come a phone call to insurance is able to trigger an appeal without the patient or MD realizing it! My MD's office insisted she was working on an appeal, yet Anthem heard a verbal request and ... upheld their previous decision.
    How come insurance service reps aren't required to get a positive confirmation, such as "are you requesting an appeal?" "Do you want to add any information, or include any specific questions for us to answer?"

    I believe what happened is that Anthem's provider line took our MD's request for peer-to-peer review, in which our MD asked that "another MD review this" and took it as a request for a 1st line appeal. So now it looks like we've blown that -- with no additional information given to the insurance, and of course, no additional rationale given by the insurance. This wouldn't be terrible if 1st appeal only looks at the plan language anyway, and only the 2nd appeal can rule on "exceptional / extenuating circumstances (like diagnoses w/o an ICD-10 code). In that case blowing the 1st appeal may not matter, but I still would have wanted to at least pose Qs like "what is it that you claim will be more effective than rituximab for his condition?". i'm tired, pissed. Did I say discouraged? Hopefully I'll feel better in the morning, but I've been having a ton of trouble falling asleep. Maybe my kid isn't the only one with intense anxiety and dark intrusive thoughts!
    So this was both a rant and a real set of questions. Empathy and real answers are both welcome!
  17. Like
    wisdom_seeker reacted to dcmom in PEX coverage & alternatives   
    I am so sorry for what you are going through.
    I have two pandas daughters. I agree with the genetic predisposition. Most of the (limited) literature on pandas alludes to a genetic predisposition. Strep (and other illnesses) trigger pandas in some with this predisposition. What is seems to trigger, however, is an autoimmune disorder, which can subsequently be triggered by many things, some you will not find. Strep is thought to trigger other autoimmune disorders, so this makes sense. The same autoimmune disorder varies from patient to patient, think MS or lupus. Some may die of those disorders, some have long periods of remission. Doctors don't really have a great handle on triggers, or treating, for many of them. This is what I see in my girls. They were originally triggered by strep- but since can be triggered by an upper respiratory infection, or not, or can be triggered by something that we cannot figure out. They can have long periods of remission- 2 years, or short. For my kiddos, unlike some others, they do not get sick more frequently or have a hard time getting over illness- that part is normal. Anyway- this is what we see in my two girls- which seems to line up with Swedo's vision of pandas.
    Both of my girls have had pheresis twice. All four times, UHC has denied our request for a pre approval. All four times we have pre paid to the hospital. All four times, we submitted the claims anyway, and all four times UHC has then paid. It sucks. It is not easy to come up with the $$. One time we borrowed from my dad, one time we withdrew from 401k, and other times we were lucky to have the money. We have spent so much money over the years on this disorder. Frustrating. We had miraculous results 3 of the 4 times they had pheresis. The most recent time, my younger had pheresis in early December, and we are seeing improvement, but much s-l-o-w-e-r. Unfortunately, pheresis is not a cure. It can be a cure for that episode- but there will/ may be another.
    I agree with demeter. We have done therapy at USF in FL (managed by same doc as the Rogers program there) and at times that has been the answer. But I do think if they are in the "crazy" out of control place, medical treatment may be needed be4 therapy. I can kinda see with my kids- what they might need. If they are somewhat stable, but ocd and odd- therapy may help. It will also be a lot cheaper (UHC covers both programs- and even if it doesn't fix them, because they need medical treatment, it can take them from where they are to a better place. So financially it might make sense to give that a go before medical intervention-
    The last thing I will suggest are psych meds. We resisted for a long time. Now both of my daughters are on prozac. It was a miracle for my younger daughter who could never seem to get back to baseline even in between flare ups. Brought her back to baseline in 2 weeks. The prozac of course does not prevent pandas flares, but for my girls it has really helped stabilize their mood through pandas episodes. They are both in flare ups now, but their mood is fine, they are really only combatting ocd, which while that can be debilitating, we can still enjoy family life. We are currently trying to raise the dose to see if it helps the ocd, so far no.
    Good luck. I commiserate that having two pandas kids makes this nearly impossible. Logistically and emotionally. So many times what might be best for one, doesn't work for the other, etc. Plus financially, paying for two is of course twice as hard.
  18. Like
    wisdom_seeker reacted to Albymom in I want to know the "why's".....   
    A highly reactive immune system can have many causes. I have given up searching the internet trying to piece all the clues together. Our PANS expert doctor explained that once triggered, auto-immune and/or auto-inflammatory diseases can take up to five years to fully heal. Our daughter sounds very similar to your child. She has always tested negative for everything but she is classic PANS with onset 1 year ago. They eventually deduced a valid hypothesis for a cause (a rare autoimmune disorder), but her specific situation is still fuzzy and anyway it's not really important in terms of the point I want to make.
    Our daughter responded very well to abx at first (even though she had no active infections), then she slipped. They moved her to HD IVIG (she's had 5 since Halloween), and to steroids (both oral Prednisone and IV-infused Solumedrol). Each treatment would return her to normal for a few beautiful weeks - sometimes as many as five in a row -- before a cold sore or a loose tooth or a stupid common virus would sink her again.
    Because her relapse and remission pattern was so clear, and because it was clear she is triggered by almost any insult to her immune system, our doctors moved us to the next level treatment in January. We are now doing Rituximab infusions and Cellcept to tamp her super-reactive immune system.
    My understanding is that these two treatments have, in the past, typically been reserved for "severe" auto immune / auto-inflammatory PANS cases, but our daughter is quite functional and she is now more behaviorally "normal" than not. When she is in remission, she can reach between 90 - 100% baseline "normal". She attends school daily (unless she gets a virus, a loose tooth, or another type of immune system insult), and when she's well she does quite well both socially and academically. It's amazing to us that she's having such a great year school-wise, despite having missed 30 days due to PANS. If you met her or taught her in your classroom, you might not even notice she was different. Yesterday, one of her teachers emailed us to say it is "truly amazing to see the difference" in our daughter between days she's not feeling well, and days when she is 100%.
    I've heard that some clinics are moving to Ritux and Cellcept treatment sooner than they would have in the past for kids with continued, highly reactive immune system responses. I encourage you to look into the next level of treatment for your child. Is it terrifying to consider a form of chemotherapy (Ritux) along with an anti-organ rejection drug (Cellcept) for your child? Absolutely. While is was not a decision we made lightly, in some ways wasn't really a decision at all. When the choice is to continue this push-and-pull heartbreak of remission and relapse, when you live in constant fight or flight mode just waiting for PANS to kidnap your kid at any minute, stealing more days from her beautiful life, and when your child has reached steroid toxicity levels and nothing else seems to "holding" her at well for more than a few weeks at a time, then moving to the next level isn't really a choice.
    Our daughter's risk for infection is higher because she is now taking these drugs, however, as our doctor put it: "If she gets an infection, we admit her and treat the infection and she goes home. The number one, most critical priority is protecting her healthy brain." The goal is to suppress the auto-inflammatory cycle long enough to give the brain time to heal. This can take up to five years. Many kids are on this protocol for many non-PANS-related conditions and they live very normal lives.
    Good luck.
  19. Like
    wisdom_seeker reacted to ibcdbwc in I want to know the "why's".....   
    I would like to add just 1 cent to this conversation. My son is 14. An interesting development occurred in that he is now able to describe what a flare feels like for him. This never used to be. When he was not flaring, he barely remembered the flare itself. And in a flare, communication was next to impossible.
    But a light bulb occurred. He can now describe it. He can now remember it. Unfortunately he also lives in fear of "it happening again." When he is flaring, his brain is swollen. To him, he feels like his head is wrapped tightly in a dark cloth. He can still hear noise and see light but he cannot process quickly enough. It's like everything is completely muffled and filtered. He's present but things are moving along without him. He simply cannot follow along in class. And that makes him feel so sad and so anxious. Because normally, he is sharp and follows right along. In fact normally he's used to being very efficient and at the top.
    When reading text in a flare, he must read words over and over and over to make any sense of them. His short term memory in a flare is completely gone. His working memory is also gone. With complex math for instance which is normally easy for him - he still knows how to do the problem but gets lost in the steps. He cant remember which steps he's already completed. And simple math concepts like adding positive and negative numbers are all but forgotten. There is some sort of plug in his brain. Some sort of block. I have caught him a number of times, literally smacking himself trying to figure it out.
    The anxiety created from all of this is incredible. He literally loses his mind -- and he now knows it -- and that makes him understandably incredibly anxious in a flare. It's horrific. Add in the OCD and food refusal - ugh. My son isolates in a flare. He knows its not his normal him.
    If your son is like mine its no wonder they don't want to go to school when they are flaring. It's painful to not be able to do the things they know they should be able to do.
  20. Like
    wisdom_seeker reacted to PhillyPA in Should we do these tests....again (some new)...Igenex   
    Hi eljomom,
    I once went to a conference and the speaker said, "Ok, I now want everyone in the room to hop on one foot." Everyone in the whole room hopped on one foot but me. I didn't do it because it didn't make sense to me. That experience was very good practice for this forum. When you have a room full of people whispering Lyme, it is very difficult to not to want to buy into it. Especially if it can save a life. For many a Lyme diagnosis will save lives. But it won't save my son's life. He has an autoimmune disease. It doesn't matter how much I want Lyme disease to fit it just doesn't. A Lyme disease diagnosis offers more hope. Not only could my child get treated for pandas but also lyme - that is double hope. Two teams filling my child with miraculous and life giving antibiotics. Something in this combination will surely work...
    However, I stopped hopping on one foot. I am standing still. My son has an autoimmune disease and I am very grateful that I stayed on the path my gut told me was right all along. Instead of Lyme treatment, he is getting autoimmune encephalitis(pandas) treatment. He is getting multiple high dose ivig's and he is healing. With each one he is healing faster.
    If I would have changed course, I could have ruined my son's chance for recovery. Steroids. To think I would have given those life giving drugs up. High dose ivig's - pretty much gone. I shudder to think if I made a different choice. I just sat back and thought about it, looked at the evidence for my kids, and made my decision.
    I don't come on this forum like I use to. I use to come on this forum for support and to share my questions. However, now the forum is stressful for me. I see well meaning good hearted people sharing Lyme stories on the pandas forum. I see newcomer getting confusing and conflicting advice. I don't understand why the pandas forum can't be just about pandas. If people are smart enough to find this forum, they are smart enough to notice the Lyme disease tab and click on it if they have questions. All of the Lyme responses to people's pandas questions is quite frankly, annoying. It is making everyone hop on one foot. Panic,panic, panic. Lyme deserves to be investigated and discussed on their own forum.
    I feel your pain eljomom. I have been there. I have talked to you before via pm. I know who your pandas doctor is. Trust her.
    Ok. Back into hiding for me...
  21. Like
    wisdom_seeker reacted to pr40 in Appealing HD IVIG/PANS denial -- do/don't mention IgG deficiency?   
    you say: "But... what if insurance were to approve say 500mg/kg IVIG product for the IgG deficiency, and my doctor prescribed 1.5 g/kg, would insurance pay for the administration and 1/3 of the Ig product, or nothing? "
    it strikes me that this is not a possibility at all since they would approve only what your dr ordered. if your dr did not order LD, they would not make their opinion on it at all. in other words, panel only decided on given orders. and yes, I believe, you are correct to argue with their wording blood product to help boost your body defenses -- and offer a different reason for IVIG. this is all very, very technical and the only way to win is on technical grounds. for the same reason, you don't need to mention additional benefits since the panel is not there to consider those.
    Further, you can ask a representative what IVIG is approved for. they are there to HELP you and have to answer that question in most helpful way.
    best of luck!
  22. Like
    wisdom_seeker reacted to Gpookie in Tics stopped and then got worse after 6 days on Augmentin   
    Even after 2 years on Augmenten daily (1000mg), our kids symptoms kept returning and getting stronger until we discovered an infection that the Augmentin wasn't impacting. They actually now have added a 2nd antibiotic to keep them on track. Every child is different and it also depends on how long they have been ill.
    Insufficient detox also causes downturns even when the antibiotic is working...But every child is different...
  23. Like
    wisdom_seeker got a reaction from kakrpa in Help please: insurance med. necessity / efficacy of IVIG for PANS / autoimmune encephalitis)   
    Thanks to everyone.
    I will certainly post an update once we have a determination.
    @Gpookie and @Tj21 -- which specific subclass deficiencies did your kids have, and did they have low total IgG and low response to pneumococcal vaccine challenge as well as clinical symptoms?
    Tj21, thanks for the link to your other thread. Very helpful! I skimmed it and will read in detail tonight.... but I think I'm asking for info you didn't give there. And since you have BCBS as well, and got high dose IVIG approved, this info is especially relevant.
    @Gpookie, how well (if at all) do your kids' PANS symptoms respond to the high dose and the monthly low dose IVIG?

    My DS only has IgG3 (and partial IgA) deficiencies, with borderline normal response so does not fit CVID despite tons of sinusitis illnesses. I need to review the pneumovax rsponses to see if they really could fit, unfortunately the MD didn't order tests for all the 23 subtypes, and the pre and post weren't even the same sets (different lab), so it's a bit confusing.
    My update:
    Until this week I've been waiting for the MD who's willing to take on our case to have the blocks of time she needs time to review all of our son's records and write the letter of medical necessity. ... I just heard from her that she will start this week. Frustrating, but I know she is thorough, kind, and overworked, and that this is a thankless task for any MD. So I'm really trying to focus on the positive.
  24. Like
    wisdom_seeker got a reaction from lw47 in Help please: insurance med. necessity / efficacy of IVIG for PANS / autoimmune encephalitis)   
    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.
  25. Like
    wisdom_seeker got a reaction from ibcdbwc in very high serum Ammonia, (normal BUN). possible causes?   
    Finally have repeat Ammonia results, and they are completely normal!!
    So this was likely a false positive due to inadequately rapid chilling / delayed processing of the blood sample.
    This is a reminder to myself and everyone that the more tests that are run, the more likely that at least one one will be a false positive (false abnormal) or false negative (false normal).
    Despite that knowledge, until I find what chronic infections are driving DS16's PANS, I want to leave no stone unturned. (But even that isn't clear .... I am about to create another post w/ questions regarding his infection tests' IgM/IgG results).
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