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pr40

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Everything posted by pr40

  1. this is the best article I found on the microbiome and psychiatric symptoms. Here is a quote that helps connect the topic of the article (microbiome and ASD) with PANDAS/PANS, "Antibiotics which do not specifically target Clostridium genus are used to treat ASD symptoms under the diagnostic umbrella of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections (PANDAS), Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), or chronic Lyme disease (34, 35).' here is the whole study. http://www.microbecolhealthdis.net/index.php/mehd/article/view/26878?trendmd-shared=0
  2. to me this seems like PANS, since the cause was the ear infection, which may not be strep. my first question would not be if this is PANS or PANDAS condition but what you should do in addition to trying to find the right dr. who can help you understand the symptoms and offer some treatment. Your child reminds me a lot of our son who was finally, at 8 years old, diagnosed with ASD -- highly functioning. whatever it is, it seems that inflammation is a part of it and so, in your place, I would try to lower it. that would include changing food she eats at least for some time, and starting on antiinflammatories. we had some success with hi EPA fish oil, ibuprofen, and low sugar, no gluten or dairy.
  3. hard to say, really if he had pandas. his exacerbations did not follow closely after he would get infected. he did have hi titers to mycoplasma for a long time. there is an autoimmune component for sure but the cause is hard to pinpoint.
  4. I haven't been on the forum for about a year and want to leave an update on our ds now 9. His main symptoms were irritability and inability to let go of things. He cycled through various kinds of tics. we stopped all medication, including abx, and all supplements to start fresh. DS got ASD diagnosis in June at MGH Leap program. He is currently on fish oil with hi EPA (Nordic naturals has been recommended to us and we did not try any other brand) and melatonin 2 mg for better sleep. We also changed schools from a Montessori to a local public school where he has IEP. All in all, he is doing better, more stable and longer periods of being stable than ever before. Still many challenges including transitions and socialization. I wish you all best of luck.
  5. i would use term "trigger" in place of "cause". our dd had flumist in the fall a month before she had her first PANDAS episode. If I remember correctly, there are a few more people on this forum with the same experience.
  6. "if night sweats, have you considered Lyme/babesia/bartonella" we did the lyme test early on and it was not positive. he doesn't have many of the other babesia symptoms. thanks for trying the description in AHERLTH post is about IV. we are thinking of nasal infusions. I am sorry the IV ketamine did not work -- I don't know how to turn off the bold letters.
  7. I just found a new article on ketamine. its mechanism of action has been discovered. this is the gist. It refers to an element of ketamine that is active against depression: "Notably, unlike ketamine, the compound does not inhibit NMDA receptors. It instead activates, possibly indirectly, another type of glutamate receptor, α-amino-3-hydroxy-5-methyl-4-isoxazole propionic acid (AMPA). Blocking AMPA receptors prevented the antidepressant-like effects of (2R,6R)-HNK in mice. The experiments confirmed that the rapid antidepressant-like effects require activation of AMPA receptors, not inhibition of NMDA receptors." study is here if you are interested http://medicalxpress.com/news/2016-05-ketamine-depression-byproduct-metabolism.html
  8. indeed, Early Onset Bipolar is quite controversial. At this point, we don't care what we call it but what we can do about it. ketamine is not a cure of the kind that IVIG is for some kids but it is very effective with symptoms for at least some kids with our ds's symptoms. yes, our ds has daily night sweats, very profuse. he is also often too hot.
  9. thanks, dut. I saw your question as a sign of care, not hate. I was thinking of an antiviral but am not sure who would give it to us.
  10. Dut -- thanks for the question. I do consider it a part of the PANS. My question is what could help ds and he meets no only criteria for PANS but also for bi-polar disorder as they are defined by the physician (Papolos) who started ketamine treatment for children. Ds runs very hot and, apparently, temperature disregulation is the basic symptom that ketamine helps with. Ds is helped by ibuprofen which too lowers his temperature. And then also because ds does not have obvious OCD, he does not qualify for IVIG in PANDAS dr's minds. We are grasping for straws.
  11. the reason we are considering ketamine are ds's symptoms. they are not only pans but include also irritability and lack of control. We also tried everythign else we knew except IVIG which we are not sure how to get since ds does not have OCD symptoms anymore. I listened to NPR then came across this site http://bipolarchild.com/ketamine/ and yet, ketamine can have terrible side-effects but for our ds we are not considering high but rather very, very low doses that would, indeed, need to be repeated perhaps every 3 day or so. thanks for responding.
  12. We are looking for a new line of treatment beyond abx. We tried clonadine, tenex -- first three days, positive, negative after that -- and now more recently abilify. WIth the last one, we had a bit more success and are still looking for medication to deal with ds's very frequent rages and extreme irritability. we have gotten here after about 2 years that were mostly quite. The latest one, because of the NPR two recent reports, we would like to try is KETAMINe and I want to ask you all for your experience with it. thanks in advance.
  13. 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!
  14. thanks, MomwithOCDSon. no, this is the only psych medicine. We decided on it, when abx were no longer enough and that happened after many very good periods which made us think that our ds's PANS is mostly behind us.
  15. I looked for experience with abilify here on this forum and it seems that some kids did well on it. we are starting low and slow and so far, third day, it seems to have a more positive effect on rages than anything we tried before. I would like to ask you for if it worked for your kid and how. I am especially interested in long term experiences. Please post so that others can refer to them as well. thanks in advance
  16. I suppose you do know that you can show NIH web page to your dr if he she doesn't know what pandas is. Here is one of the many pages http://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/web.shtml
  17. if your dr is open to new things, he/she should be open to the possibility that "stress" doesn't mean much. "stress" has certain mechanism by which it causes the symptoms you see. ask your dr what mechanism, if not autoimmune, does he/she think this stress follows. sometimes, drs can be persuaded to do their job. I would argue for, at least, trial run of abx while you wait for the neuro.
  18. abx do not seem to help when long term symptoms of lyme are present. at least, scientists are beginning to be aware of this and will, hopefully, look for more effective treatment. http://www.medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/57044
  19. you can ask your pcp for blood test -- check out pinned material and suggested tests -- and start recommended abx right away. if pcp is uninformed, you can refer him/her to NIH page on PANDAS. no need to wait for a specialist visit and by the way many Children's Hospitals are enemies of PANDAS. check out if the one you have apt with is in this class.
  20. what I remember reading about encephalitis is that it is a clinical diagnosis. no test can rule it out. why not go with it? your ds's symptoms seem to fit. please, tell us if this or any other tactic worked.
  21. dd12 was doing great for a while, 4 months off abx but then yesterday she complained of sore throat, could not fall asleep, and her legs (RLS) started acting up. Her flare also came with a nose bleed. We did throat culture for strep just to make sure and are putting her back on Ceftin 250mg x 2 a day. i want to check with you all if nose bleeds are common for your child's flare. Also, if you have any other comments or suggestions about dd's symptoms, please, let me know. thanks in advance!
  22. puritan's pride seems to have highest number, biggest variety, and cheapest price, of good bacteria. study evaluating it found that bottles contain what the label says they do. Not sure who sponsored the study, though.
  23. both of our kids are like what you describe, screen makes them flare after they stop watching. major flares. We can even distinguish horrible weeks when they are allowed to be on screen bc they earned it with good behavior. I am not sure why this is going on other than inability to shift focus, getting stuck, which might be a form of ADHD. I read the article and didn't like its recommendation much since I don't think that the screen causes the problem. It all causes a flare.
  24. just to second what Mom23boys says: it would be NEGLIGENT on the part of your dr not to put a child with Syndham's Chorea on abx. mention the word negligent and a law suit if he does not give you long term abx. In your place, I would look into IVIG as well as dcmom suggests
  25. 5 day of ABX may not do it. You may see results right away but for many people changes are very slow and gradual. mycoplasma is very hard to treat, by the way. you may want to read about it.
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