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Albymom

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Albymom last won the day on March 21 2016

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  1. I'm curious as to how it's going with the Abilify. Is there any update? Thank you.
  2. Am I imagining things?

    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.
  3. 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!
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. Sounds like petechiae. Petechiae rashes that come and go can be indicative of Vasculitis, an auto-immune disease. Because these rashes come and go and aren't itchy or raised, I'd never given them much thought. It turns out they were key to our daughter's diagnosis and treatment. Good luck.
  10. 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
  11. 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
  12. IVIG study results

    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.
  13. 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
  14. One quick update, I've learned from Dr Swedo's 2014 West Coast PANDAS Symposium talk that Cunningham Panel results seem to indicate that PANDAS kids tend to have higher Cam Kinase II scores than non-PANDAS OCD kids. This coincides with our CKII scores.
  15. Thanks for the responses, and for the the homeopathic remedy information. When the Naproxen wore off, she was fine. Yet another puzzle piece...
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