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babyboo77

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Everything posted by babyboo77

  1. Hi everyone, I am very new to all this; like it's been a week. and like all of you who came here for answers and help, I have driven myself nuts in the last week devouring all the information I can get to fight for my 6year old son back. I found the link to a very interesting presentation on this forum that I have been watching from Dr. Kendal Stewart on neurological Auto-immune disorders. IF what he said is true, then his treatments steps make sense to me . . (.of course he's selling the supplements to help.). I had difficulty finding too much tying him to anything valid about PANDAS/PANS etc treatments, Here's my question: Has anyone had the premise of his research confirmed by other doctors/neurologists . . .(The premise is that Neurological Auto-immune syndromes occurs because of the following factors : vitamin d deficiencies, problem with enzyme making methatetrahydratefolate, and probs with dopamine levels; he also states that there are number things that can "throw you down that vortex (emotions, trauma,vaccinations, surgery, environmental factors, bacteria, meningitis etc etc) but WHAT throws you down isn't as important is HOW you get back up the vortex and what is standing in the way of doing that. . . Which means that you can't heal the brain or until you heal the damaged/inflamed nerves . . and how you do that is to make sure the Vitamin deficiencies, folate and probs with dopamine levels are controlled to start the healing process. (That's my watered down , and hopefully accurate version of what I heard). Has anyone else heard this from a treating physician? Has that physician's treatment approach helped your child . . . .AND if you have had this confirmed. . has anyone tried any of his supplements for PANS/PANDAS etc and found any success with this? I'm not really interested in a trial and error approach to treatment unless testing is super invasive and the risks outweigh the benefits. Now that being said I know there are numerous different reasons why these neurological autoimmune disorders happen and I get its different for EVERY kid, therefore treatment approaches will differ also. That being said . .I don't know that either of my doctors ordered ANY of the labs that I see people listing that have high titers or that Dr. Stewart suggests testing for . . .so I will be discussing all of this with the two doctors I am working with also . . . Here's the presentation: http://www.bing.com/videos/search?q=dr%20kendall%20stewart&qs=ds&form=QBVR&adlt=strict#view=detail&mid=2B4C4D2EB859CA78F0912B4C4D2EB859CA78F091
  2. I too am struggling with this. We were diagnosed less than a week ago. By two separate doctors who said my 6 year olds son was a "classic" example of PANS. I consider myself lucky that I specialize in diagnosing mental health in children that I knew after a few weeks of beyond severe behavioral outbursts, OCD outbreaks, self harming, depression, sensory issues, regressions, etc that something was seriously wrong with my happy, cuddly, people pleaser son who had ZERO behavioral issues before this. When symptoms started we treated them behaviorally which set his anxiety level through the roof making things worse. We started an anti-biotic last week, but because there is no strep and its PANS, the MD and pediatric neurologist haven't wanted to do further blood work to determine what bacteria or virus is causing this. So they started us on what I feel may be a "random" anti-biotic, but now a week later I am searching and weeding through information to tell me what the healing process looks like. Do symptoms completely disappear, do they wax and wane, do some symptoms disappear and some don't, do they just change, does a slow disappearance mean the anti-biotic isn't working on that particular bacteria or does there need to be time for the brain to "heal" once the bacteria is gone (or virus) .. . .its one of the things I am really struggling with myself .. . are things really better because of the anti-biotic or just because we have taken away every expectation for our 6 year old because it leads to violent outbursts, and are handling him like a time bomb constantly. It really makes me feel helpless and confused not knowing what to expect.
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