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Everything posted by bmf152

  1. I was wondering if anyone has used Essential Oils to cure PANS/PANDAS. I have seen and heard some success stories and am interested to know if there are more people out there who have tried but failed, or succeeded, for that matter. We are currently doing the raindrop therapy, it's only been a couple of days, on my youngest sister and her tics have almost completely vanished. All thoughts/experiences/regimines are greatly appreciated.
  2. Genetic Genie, http://geneticgenie.org/ is free, then go to http://www.dramyyasko.com/our-unique-approach/methylation-cycle/ for understanding.
  3. Methylation is overwhelming, but we are finding that it's a huge piece of our puzzle. A good place to start is Dr. Amy Yasko's site: http://www.dramyyasko.com/resources/webisodes/ Once you get your 23andme results, you should be able to plug them into her site and supplements will be recommended. Good luck on your journey.
  4. I have been searching but have not found any online support groups for teens with PANS/PANDAS. Does anyone know of any? So many of these children are older now and smart enough to have an understanding of what is going on with them, but like parents and loved ones of PANS/PANDAS kids, they still need a place to vent/find support from others who understand what they're going through. Particularly in cases where teens are experiencing the depression and intrusive/negative thoughts, which seem to be very common and I know my sister falls into that category. I feel like since stress/anxiety plays such a huge part in exacerbating their symptoms, these threads, which are geared for their caregivers, would possibly be more stressful, seeing treatments that don't work & side effects, etc. But I think it could be so helpful for them to understand that they too are not alone and they aren't "crazy". Maybe I'm being repetative because a site for them already exists....I hope so. If so, could someone please direct me to it? Thanks a bunch!
  5. You're not alone. I am the older sister (almost 30) of two younger sisters (13 & 15). For over 5 years, the 13 year old has had "Tourette Syndrome" OCD, ADD, incontinence, vertigo, unilateral hearing loss, the list goes on. She tested positive for Lyme, Bartonella, RMSF, Mycoplasma, Babesia. We only in the past few months have discovered PANDAS. THIS ENTIRE TIME we have doted over the 13 year old, Dr after Dr, while the 15 year old is an honor roll student that never had ANY tics, or any of these very "obvious" signs that something was wrong. We, in the past year, discovered that the 15 year old has been self injuring for over a year, cannot get "negative thoughts" from her head, unwillingly thinks of suicide, etc. We rushed her for bloodwork, turns out, she too has Mycoplasma and lyme. Both are now on high doses of abx and we are hoping to avoid psychotropic meds for the 15yo....very scary though. So, in other words, totally "normal" to tend to the one that exhibits such "obvious" signs that something is wrong. You can't know until you know.
  6. My little sister is 15 and is severely depressed, anxiety and OCD and was just diagnosed with PANDAS/Mycoplasma, etc. Our younger sister has the Tourette syndrome, OCD, ADD etc. Anyway, I write for a few reasons, 1. to know if you know of any support groups yet for teens dealing with this? 2. What are people's experiences with SSRI's or meds for depression/suicidal thoughts/cutting, if so, what was the result? We are worried for her as today is her first day on the antibiotics (doxy and azithro) but her psychiatrist (who knows nothing about pandas) wants her to take risperdal, to help the mental portion. Your thoughts would be greatly appreciated.
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