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Albymom

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Posts posted by Albymom

  1. You've received excellent advice from everyone on this thread.

     

    I want to emphasize a point that has already been made; these behavioral symptoms deserve to be treated as seriously as more traditional "bio-tyipcal" symptoms. They are the neurological equivalent of having a high fever, or a migraine or a broken bone, or even coughing up blood. Something has crossed the blood-brain barrier in your daughter's system, and her system is misguidedly attacking her brain. If that sounds dramatic, it's because it's really that serious.

     

    Because of how we've been conditioned to think about "medical symptoms", it was initially hard for me to truly grasp that our daughter's behaviors were 100% out of her control, and furthermore that her behaviors were actually expressions of alternate systemic responses to inflammatory agents. For example, the fact that she hasn't had a fever in over four years is actually a serious symptom. It's neither a "fun fact", nor an indicator of a strong immune system.

     

    Early, aggressive intervention can stop the auto-inflammatory process before it becomes a continuously reinforcing cycle. The longer this pattern is reinforced, the harder (and more expensive) it is to get the inflammation under control. Combatting the inflammation is necessary in order to retrain the immune system.

     

    Discerning the initial cause may never happen. I spent months exhausting Google and wracking my brain in search of "the cause". I've come to accept that in our case, while we have evidence of brain inflammation, despite the 75+ blood tests results, our daughter's initial (and continued?) 'cause' remains yet undiscovered. We now focus on what we DO know, and what we CAN do, which is to combat the inflammation and retrain the immune system.

     

    Having lived with PANS for (only?) 13 months, my main regret is that I didn't initially adopt and convey the same sense of urgent and criticality that any parent might have if their child had suffered a stroke, or a crazy-high fever, or if their child had a more "classic" presentation of Rheumatic or Scarlet Fever. We've been conditioned by our current medical and social construct to treat behavioral symptoms differently from "purely biological" symptoms presentations. We label and treat "mental health" as an entity somehow separate from "health". Although the brain is an organ just like your kidneys, lungs, and the liver, for some reason our culture separates neurological issues into two parts: biological issues and the rest -- "mental health". It was months before I truly grasped how serious this disease can become if flares are not treated immediately and with as much medical firepower as you are comfortable employing. PANS inflammation left to smolder and re-trigger can quickly become your worst nightmare.

     

    I hope you are able to quickly and easily identify an active infection or other clear cause, and that the right antibiotics will eradicate your challenge altogether. I don't know of any statistics citing how many children fully recover at each of the various PANS treatment stages, but the sooner you get comfortable ringing alarm bells and pushing hard for serious treatment quickly, the shorter your trip down the rabbit hole to PANS Land will be.

     

    I'm sorry you're here, but you're not alone. Best of luck to you and your family.

  2. We just completed our 6th HD IVIG, and we play it by ear.

     

    If our daughter seems especially tired, we'll go for a 1/2 day of school. If she wakes up energetic, we go for the full day. We also give the school a heads up and ask them to call us if there are signs of exhaustion.

     

    To be fair, our daughter definitely seemed more tired for ~8-10 days after her first two IVIGs, so she may have developed increased tolerance. She did 1/2 days of school for the first week immediately following her first 2 IVIG treatments.

     

    As for weakened immune systems, we were told that kids actually have an extra immune system boost immediately following IVIG which helps protect them from foreign entities.

     

    Good luck!

  3. 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.

  4. Hello

     

    I wanted to share our experience and observation that lengthy hot baths or showers and/or strenuous exercise seem to temporarily exacerbate our 10 yo daughter's PANS symptoms. The post-heat 'mini-flare' lasts about 15 - 20 minutes until her body reaches normal temperature again.

     

    We've tested this (odd!) theoretical hypothesis several times and found it to be solid. When she is in remission, this doesn't seem to happen. It only happens when she is otherwise flaring, and exposed to extra heat.

     

    Some research led me to Uhthoff's phenomenon, which seems relevant. I thought it was interesting, so I wanted to share.

     

     

     

     

  5. I'm so sorry, Wombat140. I didn't mean to cause a problem. I am guilty of not thinking globally about access. I understand what it is to feel tired, and usually in my case it's both tired and overwhelmed with trying to find the right treatment path for our daughter. Petechiae can be evidence of Vasculitis, which has many forms ranging from minor or serious. Our experience is probably rare, but in any case now you've got this info in your back pocket in case it becomes useful. I wish you all the best.

  6. I agree with documenting symptoms and medications (along with photos of these rashes). I would also put infection-hunting on the back-burner for and visit a Rheumatologist asap to discuss these rashes (ideally one who specializes in AE). Petechiae rashes can be idiopathic, infection-caused, autoimmunal or even medication-caused. Regardless of root cause, you could ultimately be dealing with a form of CNS Vasculitis. A Rheumatologist should order an MRI with contrast and, ideally, with ASL to check blood perfusion -- especially perfusion to the basal ganglia (the constriction of which can cause PANS-like symptoms), and the neuro radiologist should have specific note to look for (and rule out) blood vessel inflammation in the brain. Most MRIs and neuro radiologists will miss this unless they are looking for it because MRIS look for more structural differences vs. blood vessel nuances. If you find Vasculitis in the brain, the treatment path ahead is crystal clear.

     

    Good luck.

  7. Hello

     

    Our 10 yo PANS daughter reacted with otherwise uncharacteristic irritability / rage several days after I began giving her a high dose of liquid Omega 3 daily (Barlean's Organic Oils - Omega Swirl Fish Oil).

     

    It was surprising because at the time she was in PANS remission; totally healthy with zero PANS symptoms, taking only abx and the occasional Iburprofen. Of course we assumed we were helping her by giving her these supplements, but I was carefully tracking her behaviors against her diet and meds at the time (abx), and the causal relationship was clear once I stopped giving her this supplement. She also reacts this way after eating too much cheese or dairy, which is rich in Omega 3.

     

    At the same time I documented very light, petechiae rashes appearing on her back and stomach. These benign rashes (not raised, not itchy, just speckled and odd) and they would come and go. I didn't pay much attention to them, but they turned out to be signifiers of Vasculitis, an auto immune condition which turned out to be the root cause of her PANS symptoms, but we were unaware of the connection at the time.

     

    Via 23& Me + her Livewelllo report, I later learned the following:

     

    The FADS2 gene encodes an enzyme known as Fatty acid desaturase 2, which causes desaturation of fatty acids, converting dietary -linolenic acid (ALA) to omega-3 long-chain fatty acids (EPA), a precursor of the active form - DHA. Blood levels of Poly Unsaturated Fatty Acids (PUFAs) are influenced not only by diet, but to a large extent also by genetic variants. These variants are common in Europeans. (NAME) has low efficiency for converting ALA to EPA, due to GG genotype for rs1535 compared to people with other genotypes. Other clinical, genetic or environmental factors may influence this outcome. People with low efficiency genotypes may not benefit from taking plant sources (ALA) of omega fatty acids and may benefit more from micro algae oil which has more of the EPA form."

     

    I've been unable to make any further connections between this information about her genetic predisposition and her reaction to Omega 3 supplementation, other than I know to steer clear of the liquid form. My rudimentary assumption is that Omega 3s play some role in her BBB permeability, which simply equals (for us) DON'T USE THEM.

     

    Hope this is helpful.

  8. Hello

     

    I'm wondering what role, if any, IVIG might play in causing our DD's Strep titers to nearly double.

     

    Her results for both the Anti-Strep O & Anti-DNase B tests have been normal and consistent in June, July and September. In fact, each set of results are almost numerically identical.

     

    After her September tests, she did 3 IVIGS before being tested again last week (1/12/16). Her results remain within normal range, it just seemed odd that they would double after having been consistent for four months. Her last IVIG ended 12/18/15.

     

    She's been taking active-strength Amoxicillin since mid-September (and prophylactic strength dose before that), though I'm aware that abx treatment doesn't necessarily prevent strep. She has had a few flares since mid-September, and I'm aware that some strep is asymptomatic.

     

    Thanks

     

     

  9. Hello

     

    What are the practical pros and cons of long-term steroid therapy vs. taking an immunosuppressant such as Cellcept?

     

    Our 10 yo PANS DD responds well to steroids, both IV Solumedrol (given when we receive IVIG treatment), and oral prednisone. She has been taking steroids since late October.

     

    I love the steroids for clearly enabling her recovery, but I hate the steroids for what they are doing to her body (puffy face, weight gain, the potential for internal organ damage, etc).

     

    I feel funny complaining about this. Just a few months ago, I would have killed for our daughter to be as lovely, normal and functional as she is today, but recently some kids at school made reference to her "chubby cheeks" and she is mortified.

    Our doctors are PANS experts. When I voiced my concern, they've say they're more concerned that perhaps she may not be taking enough steroids to maintain a 100% baseline functionality. They have also mentioned that reducing steroids too soon may instigate a relapse.

     

    The thought of increasing her steroid dosage terrifies me. The thought of a relapse terrifies me.

     

    In the past they have mentioned switching her to a a steroidal immunosuppressant if the steroid side effects prove to be too great, hence my question as to the pros and cons of long-term steroid therapy vs. taking an immunosuppressant such as Cellcept.

     

    Thanks

     

     

  10. Hello.

     

    This study was published in the journal in February, and made available online for free earlier this month.

     

    "The" Swedo/Yale NIH IVIG study is still pending publication.

     

    I have **heard** (via folks who recently heard Dr. Swedo speak) that the NIH study contained a design flaw that was realized only after the fact, much to Dr. Swedo's reported disappointment. My understanding is that she is working with the designers to modify the protocols and repeat the study. I believe the NIH study results will still be published, but I'm not sure how much it will help us from an insurance perspective.

     

    This particular published study certainly gives us all good reason to be optimistic about IVIG. One objective critique is that these individual cases were hand-selected for publication; the overall patient N count is unknown. On the other hand, our own IVIG results have been very positive -- on some days I would even say "miraculous" -- but it's still too soon for us to call it since both of our IVIGs were done within the past 5 weeks.

  11. Hi

     

    Our 10 yo DD is PANDAS. We're doing abx and Motrin. We've done Cunningham Panel and Livewello, and are in the process of ruling out Lyme and other co-infections, as well as checking levels of B12, B3, B6 and methyl-folate. The PANS clinic has been extremely helpful for initial diagnosis, but have begun to suggest Prednisone as a next step. They seem uninterested in ruling out other infections or reviewing the Livewello results.

     

    I'm gathering as much data as possible, but I don't have the Neuroscience expertise needed to synthesize and interpret the data. Our DD likely has ADHD & mood regulation challenges, both of which are exacerbated when she has a bacteria or a virus. Most medications have adverse effects on her, including Omega3 supplements. I have also seen her in periods of "fine" and would like to learn how to keep her system well-regulated. The price of the current "try it and see" approach is too high, and feels positively medieval.

     

    Are there credible consultants available to help us interpret our Livewello results and suggest a course of action, or at least provide information about what NOT to do? I'm aware of Dr. Yasko's work, but I don't have the time to sit through the DVD course. Even if I did, I wouldn't trust my knowledge to implement a course of action.

     

    Thank you

     

     

     

  12. Our 10yo PANDAS daughter just took her first dose of Naproxen, as prescribed by the PANS clinic. She is otherwise doing pretty well. She woke up in a great mood, normal behaviors, etc. Within a few hours, she became aggressive/quick to anger. She just seems "activated". She can tell the difference, and she is sure it's the "new medicine."

     

    Could Naproxen be an "activator"? She is normally super sensitive to any/all medications but tolerates Children's Motrin just fine. We thought we'd add Naproxen to her daily dose of Amoxicillin to help decrease her immune system. This reaction was totally unexpected...

     

    Thanks

  13. Hello

     

    I know many PANDAS/PANS kids struggle with Dysgraphia and other LDs, not to mention the frustration that comes along with a flare.
    I just wanted to alert folks that Google Docs just added a new feature called "Voice typing". Last night our 10 yo PANDAS/ADD daughter spoke her homework into a Google Doc using Voice Typing and she was beyond thrilled.
    It's free and easy to use. We found Dragonspeak to be expensive and too time-consuming to learn. This was so simple that she just started using it immediately with no "training".
    I hope it helps someone else. (x-posting to ADD/LD board)
  14. Hello

     

    The PANDAS/PANS clinic suggested that my husband and I be tested to see if we are Strep carriers. I'm having trouble understanding exactly which tests we should ask our general practitioners to order. The clinic did not give specifics beyond getting our throat swabbed. FWIW, they suspect our 10 yo DD is strep-triggered, but we don't know yet for sure. She's had a full immunological work up including the Cunningham panel, and lots of tests for nutrient deficiencies, etc. She seems to be triggered by any illnesses, but sore throats in particular. She has not been tested for Lyme, Bartonella, MycroP, or Babesia. When I ask about running those tests, they reiterate that they believe she is strep-triggered, but I will continue to push.

     

    In any case, my husband has a terrible reaction to having his blood drawn, so I'd like to get the list of "carrier" tests right the first time so I can avoid bribing him to return. I'm having a hard time getting specifics

     

    This is my list so far. Would you recommend any other specific "carrier" tests?

     

    1. Throat swab for active strep

    2. Blood: Anti Strep O

    3. Blood: Anti-DNASE B Titer

    4. Blood: Anti Nuclear Antibody

    5. Check for Mycroplasma P (I assume this is a blood test)

     

    Thanks in advance for any insight.

     

     

     

     

     

     

     

     

  15. Hello

     

    I'm wondering whether PANS kids normally flare with viruses, or only with infections, or both?

     

    10 yo DD has been doing really well on daily Amoxicillin since being dx'd w/ PANS in June. She's been doing so well that two weeks ago the (PANS-friendly) Dr. reduced her Amoxicillin dose a prophylactic strength vs. an active-infection-fighting strength dose.

     

    Two days ago, DD's mood changed from happy to irrationally irritable, more anxious than normal, and generally moody, but no OCD, Tics, or Chorea. That same evening she complained of a sore throat, however she didn't have a fever and was eating normally (for her). Yesterday she was the same, still no fever. We took her to the Dr who noted and that her tonsils were very enlarged and saw that her mood was different from normal, but the Dr saw none of the"classic" signs of strep or other infections/illnesses. DD refused a throat swab (severe anxiety) so we decided to treat it as an infection and resume the original Amoxicillin dose strength. We didn't do blood tests because DD was already in meltdown over just the mention of the word "swab". We gave her the new dose at 5PM yesterday, and by 9PM she was "easier". This morning she woke up singing and happy and generally back to normal.

     

    You could argue that either she has/had an infection and the Amoxicillin is addressing the problem, or you could argue that she gets irritable and moody when she's sick just like the rest of us, and that she has/had a virus and she just happens to be feeling better this morning.

     

    Thanks in advance for your insight.

     

     

  16. Hi

     

    How long does it generally take to see the full benefits of ABX treatment? Our PANS 10 year old has been on Amoxicillin for ~9 weeks. She's been in remission for ~8 of the 9 weeks. We're still not completely clear as to what caused her PANS symptoms (a comprehensive set of blood tests has been run and were all normal at the time we started seeing the clinic), but I swear I'm seeing small but gradually continued improvement as the weeks go on.

     

    I'm used to thinking of ABX as a quick and effective fix for infections (assuming you've match the right ABX to the infection), so on one hand, it might make sense to stop ABX if we're not exactly sure what caused her symptoms, on the other hand I'm wondering whether it's possible for regular ABX treatment to gradually improve any low-lying/under the radar infections over a long period of time. Certainly I understand the prophylactic ABX strategy, which may be reason enough to continue, it's just interesting that I'm seeing gradual improvement over time.

     

    (I should note that a Cunningham Panel is currently in process, which may tell us more about the origin of her symptoms.)

     

    Thanks in advance for your insight and opinions.

     

  17. As promised, here is our latest update.

     

    We've had several clinic visits since I last posted. Our experience there has been nothing short of phenomenal, starting from the moment we arrived. I felt truly heard and fully understood by a team of open-minded, caring, and thoughtful professionals who go to great lengths to review medical and behavioral history data for clues and markers, and who completely understood my descriptions of her behaviors, as well as my frequent breakdowns while explaining the experience. They were also very familiar with children who are frightened to death of throat swabs (like our daughter). It is invaluable to have multiple specialty doctors reviewing your case, sometimes all of them in the same room together discussing hypothesis and next steps. Lastly, I never once felt rushed.

     

    I am acutely aware of how lucky we are in this respect. In fact, the main reason I have not posted an update to this forum is that I know the struggles of other families trying to find receptive doctors to help heal these poor children. This condition is devastating, and having to dealing with red tape, frustration and short-sighted professionals just adds so much insult to injury.

     

    By the time we got into the clinic, our daughter had begun doing much better. Whether or not this was related to the fact that we significantly lowered the dose of liquid Guanfacine (Intuniv) she had been taking remains debatable. In any case, all additional blood work taken via the clinic has been normal, other than a few slight elevations. However, as the wise PANS/PANDAS veterans on this forum have pointed out, the clinic professionals are well aware that there could be many reasons for normal results at a specific point in time (especially after a"flare"), so while we're not sure whether it's PANS, they are actively tracking her progress and bloodwork every few weeks. There's also a theory that the Guanfacine (Tenex / Intuniv) exacerbated an underlying inflammation. She occasionally gets petechial rashes, but we're not sure yet whether the cause is as simple as a common Motrin reaction, or a some underlying infection. In any case, she has been placed on a daily prophylactic dose of Amoxicillin which she will continue into the near future. In the meantime I continue to track dates, doses, behaviors and illnesses very closely. As I mentioned in an earlier post, I cannot overstate the value of maintaining detailed records of dates, symptoms, med doses (including tylenol, Motrin, and any vitamins or supplements!), reported pains, trouble sleeping - anything and everything. A doctor's language is data - especially at a clinic where they're doing research. Having solid data to share with them makes more efficient use of your time during visits, and therefore helps your child faster.

     

    I'm aware that our journey could potentially be a long road filled with flares and relapses, but for today we are indescribably grateful that she seems to have returned to "normal", and are soaking up every glorious second. It's hard not to cry even now when I think about the dark place we found ourselves just a few short months ago. I pray that the cause of the PANDAS/PANS symptoms turns out to be a "one-time" adverse reaction to being on too high a dose of medication, but of course, only time will tell. DM me anytime if you'd like to talk.

  18. Hi

     

     

    Please, please, please know that while most children seem to do well on Guanfacine (Tenex), some have serious adverse reactions.

     

    Every doctor I've spoken with holds that Guanfacine/Tenex is pretty much the safest ADHD med around, however, Guanfacine, even in small doses, has been documented to cause mania in children with ADHD. In most of the cases studied, the child also had Tics/Tourette's. The study was done in by UNC Chapel Hill Doctors in 1999. No such study has since been done (at least none that I can find). And of course there is always the list of "less common" side effects, documented mainly in adults.

     

    The makers of the drug are clear that if this drug is prescribed to treat ADHD in children, it is done so "off label", meaning the drug makers have either not done or they have not published the results of any testing done in children under age 12. Since the drug has been so widely used to treat children with ADHD for many years, one has to wonder why they would not simply go ahead and formally test the drug in children, then market the drug for ADHD. Why, indeed?

     

    My advice is to try Guanfacine but understand exactly what to look for in terms of possible side effects ahead of time. If you don't, you could end up thinking your child somehow also developed other unrelated psychiatric or health issues, when in fact they could be caused by the Guanfacine.

  19. Thank you for your suggestions, everyone. I have truly appreciated your perspectives. They have helped inform my questions for the Drs.

     

    Here's an update.

     

    The first appointment was spent reviewing her full health history and giving her a thorough physical. Based on her history, they're running multiple additional blood tests including histone levels, Celiac, another strep, Immune-complex panel, TSH, an HLA marker, and a few others I can't remember. They mentioned noting from her original blood work that she has elevated monocytes and eosinophils levels, which they said they often see in these PANS/PANDAS cases but they were also clear and careful to say they don't yet know what, if anything, this might mean. The test results will guide the next steps. In the short term, she'll take a daily non-steroid anti-inflammatory.

     

    I'm sure this has already been mentioned, but if you find yourself in this terrible boat, I highly recommend marrying your worry to whatever thread of sanity you've got left and creating a brief, succinct, and crystal-clear timeline of your child's health history since birth, inclusive of specific-day dates whenever possible. The more time you invest up front in this timeline, the better prepared the Drs will be when you arrive, and the more time you can all spend focusing on next steps. The clinic requests this timeline ahead of the first appointment, but even if you're not going to a clinic it is well-worth creating if only to avoid repeating your story to numerous doctors.

     

    It took me countless hours over several days to compile a clear history. I mined information from her baby book, my digital calendar, emails to friends/family, photos, emails sent from the school documenting strep exposure, and her actual medical records when possible. I thought I may have gone a bit overboard, but the Drs actually requested more information in some sections, specifically regarding exactly when a certain symptom started. And of course, all of it must be as verifiable as possible, since the clinic will do upfront work to marry the official records with your timeline. As my husband said, "They're practicing science." We are extremely grateful for this data-focused approach.

     

    If your child has seen more than one doctor (for ex., if you've moved, or if you need records from an Urgent care visited when you were on vacation), be forewarned that the time-consuming, and costly processes of requesting medical records seems specifically designed to prevent you from easily or quickly accessing your own child's history. I absolutely understand the need to balance patient privacy with easy access, however, the current processes are not only bespoke for each institution, but also often archaic (non-digital). It's awful enough witness this change, let alone having to navigate red tape and find time to create a detailed health history timeline.

     

    I will continue to keep you updated.

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