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Everything posted by ChrissyD

  1. This is the last vaccine I would ever consider giving any child, let alone one with an immune disorder. Back when I was still fully vaccinating my children I declined this one, as it was poorly studied and fast tracked through FDA approval...a big red flag to me. My instincts were spot on...the same CDC director who pushed the vaccine through for quick approval left the CDC and was rewarded for her efforts with a lucrative job as head of vaccine division at Merck, Dr Gerberding. How is this even legal? And now with untold amount of adverse events being reported it's become clear this vaccine wasn't studied adequately for safety...I would steer clear. It's efficacy has also been exaggerated. I would make sure my daughter gets annual Pap smears instead.
  2. Coincidentally I saw this post today. He's doing a radio show this morning with Fearless Parent http://fearlessparent.org/radio-blog-stephen-cowan-md/
  3. Yes eamom it is the same group of kids. So once again they are studying the same non PANDAS kids. If you or anyone wants a copy of the full article, message me your email and I'll forward it.
  4. And of those 19 subjects in an 'exacerbation' only 42% had OCD so the majority don't even meet Swedo's diagnostic criteria for PANDAS.
  5. They studied 44 'PANDAS' children. Of those 19 were in an 'exacerbation'. And from the study: "Of the 19 children with PANDAS who had a documented clinical exacerbation while participating in the longitudinal study, serial samples before and after the exacerbation point were available on 12 individuals."
  6. Co infections were covered thoroughly during lecture
  7. I will no longer do vaccines for anyone in my family, but it's a personal choice you need to make once you inform yourself fully. Here's a great article detailing 10 facts about flu vaccines and the flu-- http://www.safeminds.org/fact-about-flu-vaccine/ In our family we plan on practicing good hygiene & continuing our vitamins, probiotics and daily Zinc, Vitamin C & Vitamin D, to strengthen our immunity & to reduce our risk of influenza. If you do choose to do a flu shot, avoid the live flu vaccine -- flumist. And please look at this chart by the CDC of influenza vaccine manufacturers for 2013 (see link below). It lists which brands/formulations contain thimerisol (aka mercury), and which formulations are live vs. inactivated for the 2013-14 season. Please ensure your child only gets a single dose flu shot without thimerisol if you feel a vaccine is warranted. http://www.cdc.gov/flu/protect/vaccine/vaccines.htm P.S. I did not come upon this decision lightly. I'm a nurse practitioner and I currently work in a large rehab facility/nursing home, so I see a lot of influenza and I'm exposed to it every season. After preaching the benefits of vaccines and recommending them to my patients for 20+ years I had a change of heart. This year, after many months of in-depth independent reading and research I had a paradigm shift in my thinking. I now realize vaccines aren't the 100% safe and effective intervention I'd been led to believe through my medical training.
  8. My son too has lifelong constipation. He takes two antibiotics for strep induced PANDAS & Lyme. Here's what currently works for him-- --High dose probiotics twice daily (non-strep strain we use is Custom probiotic 11 strain--have to order online --saccharomyces boulardii twice daily --keeps candida/yeast under control --prebiotics--currently using Biotagen by Klaire labs ---Mag Citrate--issuing 1/2 tsp daily of Natural Calm --Mitochondrial support for his likely Mito dysfunction, which can affect GI motility--B vitamins, anti-oxidants, riboflavin, Coenzyme Q10 and L-carnitine --we have him sit in bathroom Every night and try for 15 minutes. If he doesn't go we add a dose of lactulose (it's by prescription but safer than Miralax IMO and has benefit of drawing out ammonia if that's an issue). Haven't needed lactulose much at all --also if yeast overgrowth happens, it worsens his constipation. Occasionally he needs a course of diflucan or nystatin to control it.
  9. T. Anna we went to a MAPS clinician (NP) trained under Dr Rossignol. She did some bloodwork that showed he had some markers for mito, including having an elevated alanine to lysine ratio. And he has many clinical manifestations indicative of mito. Basically it's a clinical diagnosis supported by bloodwork. We are going to take my son to a geneticist for a more formal diagnosis. Right now we are supporting him with a "mito cocktail" of b vitamins, antioxidants, CoEnzyme Q10 (Ubiquinol) Riboflavin and L-carnitine. Here is a link to an article by Rossignol with a somewhat simplified version of mito-- http://www.rossignolmedicalcenter.com/app/download/5857490704/Mitochondrial+Dysfunction+ASD.pdf
  10. Holy typos! Re: Aleve -- trying to say its not a great choice if your child has mito
  11. Tylenol can deplete glutathione, which is a potent antioxidant that helps to detoxify the body. We use Ibuprpfen often during flares. Biggest worry is GI irritation, not liver. And with long term use (years) kidney damage. One thing tonite about naproxen (Aleve) -- it's not a great choice if your hold has mitochondrial dysfunction, as many of our children do. My thoughts with all of u & your children receiving IVIG. Prayers it works.
  12. Yes momcap, the 23andme test is a very comprehensive test...all this was tested for $99 and included MTHFR and these other mutations. When you receive your results-- you'll need an app or a website to help you upload the raw data & interpret the results--- the 23andme website doesn't go deeply enough. As LLM suggested, we used genetic genie (http://geneticgenie.org/) ....we uploaded my husband's results and it gave me all his mutations with a brief explanation of each one. Please see the thread LLM referenced above for more detail.
  13. LaurenK good luck with your IVIG tomorrow. I hope it goes well.
  14. LLM thank you, thank you!! You truly are an expert at this. You should get paid for this advice! This really does help to guide me in making the first few steps to addressing his health issues. Thanks for taking the time to reply and pointing me in the right direction.
  15. So I got my husband's 23andme results and plugged it into genetic genie. My head is spinning. Just as a background, he was likely PANDAS as a child, has likely vaccine injury from the gulf war (13 or so vaccines before deployment) and recent rheumatic fever w/ regression into adult PANDAS like symptoms. He's in a much better place now, after long-term antibiotics. his results-- MTHFR Homozygous (+/+) C677T mutation Other mutations-- Homozygous (+/+) mutations: · COMT V158M · COMT H62H · MAO-A R297R · BHMT-02 · BHMT-04 · BHMT-08 · CBS A360A Heterozygous (+/-) mutations: · VDR Bsm · VDR Taq · MTR A2756G · MTRR K350A · AHCY-01 · AHCY-02 · AHCY-19 · SHMT1 C1420T I honestly don't know where to begin. He pretty much has defects throughout his methylation pathway. I gather from my brief reading that he won't tolerate methyl donors well, so hydroxy B12 better? Is methylfolate still ok? I know he needs folate b/c he has high homocysteine levels. No need for anyone to reply I'm just thinking/planning out loud.
  16. my husband sees Dr. B, as well as my son. My husband had likely PANDAS as a child, is likely vaccine-injured from the Gulf War and had rheumatic fever last year, as well as Lyme. He's 100% better now, mostly from an extended course of antibiotics, Vit D, fish oil and probiotics. We were able to get him seen sooner by starting him with Melissa, the physician's asst. They won't let kids see her for an initial, but sometimes make an exception with adult patients. Good luck!
  17. It's not very potent but its better than nothing. What about a chewable? Klaire Ther-biotic children's chewables is 25 billion units per tablet.
  18. No I think the generic testing only indicated it might be a possibility which is why they did overnight EEG to determine.
  19. There is someone in my support group that took her son to see Dr Rina Goldberg at St Barnabus after Dr T's genetic testing revealed the possibility of a nocturnal seizure disorder. She saw him and admitted him for an overnight EEG study. I haven't had the chance to follow up with her to hear more about their experience. I know that he was so bad while in hospital they gave him high dose IVIG but don't know who ordered it, etc. or how it went. They seem to be the only hospital in the area open to the idea of PANDAS.
  20. Just a detailed neurologic exam. Already had a ton of blood work from an immunologist prior to seeing her. I don't know why she would need to do an EEG on my son but every kid is different. My son was a classic, abrupt onset, strep triggered presentation w/ choreiform movements & TICS. No seizures.
  21. Northern NJ is a hard place to find a competent neurologist to treat PANDAS. Besides Dr. T there are many naysayers, in large part due to Dr. Roger Kurlan's influence through the Atlantic Health System (Overlook and Morristown hospitals). Kurlan has convinced the large majority of neurologists in practice that PANDAS is a unlikely hypothesis. I've heard nightmares about evaluations being done at Morristown and the things doctors there are telling families. Conversion disorder comes up a lot, as does 'Voo Doo' medicine. They basically think of Dr. T as a failed neurologist who lost his hospital privileges. That's how they discredit him. Dr. L is on our team and we love her. But she is full steam ahead...very aggressive with IVIG (which is what we needed at the time) and doesn't do a lot of testing for co-infections other than strep and mycoP. Will give long-term antibiotics if needed. She did, however, the best and most thorough neurologic exam on my son that revealed many choreiform movements. Please keep us posted and good luck.
  22. may I ask what he charges? I can't find it anywhere on his website. DM me if you don't mind.
  23. Hello all-- My friend is looking for a Lyme specialist for her husband in northern NJ. He has early Lyme but we feel he was given inadequate dosing and duration of his antibiotics. Please DM me with any information and thank you in advance.
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