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Albymom last won the day on March 21 2016

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About Albymom

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  1. I'm curious as to how it's going with the Abilify. Is there any update? Thank you.
  2. 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 "medica
  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
  4. 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 poin
  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 i
  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 cau
  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 h
  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 Amoxic
  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
  12. 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 insura
  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 &a
  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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