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Everything posted by Albymom

  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...
  16. 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 total
  17. 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/L
  18. 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, Ba
  19. 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 feve
  20. 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 ha
  21. I believe I've just found the answer to my question. The Moleculara Lab site FAQs says: "Your child does not need to be symptomatic to be tested, however, the decision to test at a particular time should be discussed with your physician. It is possible that when a child is symptomatic, there may be increased correlation with elevated autoantibody titers.:
  22. Hello Our daughter is doing really well at the moment. She's still being seen by a PANS Clinic and taking daily Amoxicillin. They're running a Cunningham Panel this week, but since she's doing relatively well I'm wondering whether this test would provide useful information beyond getting a baseline reading. Thanks
  23. 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 thro
  24. 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 eff
  25. 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
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