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beeskneesmommy last won the day on June 13 2015

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  1. This testing is not a bad idea and could yield more info, but with the respiratory history, I would have him tested for Mycoplasma Pneumonae ASAP. This is a known PANDAS/PANS trigger.
  2. I had the same issue. My son and I followed each other up and down thru strep and high titres. It's very likely I also had PANDAS as a child. Our specialist put me on a long term dose of augmentin (my son was already on augmentin and azith) I took it for about 3 months and it finally knocked it out of me. Very clean and careful living kept things at bay. I got strep once or twice afterward, but was able to kill it with regular 10 days of Augmentin. Once we got it out of me, things got better. It was not the whole fix, my son still had to do HD IVig, and we implemented a few other important interventions, but we beat PANDAS back.
  3. Has Dr L not done bloodwork? It would be logical that Strep is present with SC. Long term abx would be important. Augmentin. We did a combo of Augmentin and Azith. Is Dr L prescribing abx? Curious as to why your kiddo is not currently taking something. I'm not on these boards much. My son has been in recovery for a long time. However, he had SC, quite severely. We saw Dr. L and others. You're welcome to contact me. Hang in there!
  4. A close friend in the Hampstead/Wilmington, NC area has a 12 year old son with extreme anxiety and other health challenges resulting from PANS. He is home bound from school. They are looking for home care help, but having little luck finding someone qualified to work with her son's unique symptoms. The ideal care giver would be a nurse, mental health aide or special education teacher experienced with extreme behavioral/mental health challenges. They would like help up to 5 hours a day with daily tasks for him.

    Can anyone recommend an individual or agency?


  5. That's a big NO. I know of several kids who have gone into tailspins when this vax was administered. Some specialists don't do it for this reason.
  6. Thx, that's OK. been with him for years. Got the info I was looking for
  7. Losing my mind with frustration regarding a doc's office in CT! Has anyone spoken to the office mgr over there and if so, can you message me contact info?
  8. My son had a terrifying herx when he started Azith (in addition to Augmentin that he was already on) at age 4. We hung on and stuck with it and after a few weeks things evened out. The combo turned out to be a wonderful part of his treatment in getting him to recovery. Interestingly, a couple of specialists have told me that when a herx is very evident, it often indicate Lyme or another tick born infection. I have never fully accepted the Lyme DX, as my son was classic Strep:PANDAS...but whatever was going on, that herx was the start of his recovery.
  9. Hi Guys: It's been a long time. In my experience, when we don't hear from someone, it's either very good, or very bad. Mine is the former. Through trial and error, peeling many layers and years of riding the roller coaster, DS, now going on 9, is OK. Things started to even out in August 2013 with the final intervention of going GF and learning of a multitude of allergies, followed by weekly shots with low dose serum made by his PANDAS specialist. Of course there were many interventions before this, including HD IVig x 2 and long term abx, steroids, lots of testing, etc. However, we are going on 2 years of doing great. DS has had some very minor, short lived flares when exposed to illness (particularly Strep) but is living a happy, normal life with sports, social fun and great grades. I am stopping in to the forum to offer encouragement to you all. DS's symptoms began at around age 18M, pretty sure he had his first round of Strep at age 14 WEEKS. He was officially dx at age 2.5. There were years of heartache and terror for us as parents. There were years of negligent and neglectful doctors, and there were many nights when I lay awake in tears wondering if he would ever grow into a whole adult. When I look back upon those dark times it seems nothing short of a miracle that we have a healthy, happy, bright boy. I am here to tell you that your kids can get better. Don't give up! Don't lose hope, my friends! Warm thoughts and healing prayers to you all. Kath
  10. I tried a sample with my son and he hated the taste. I didn't think it was that great either. We use Nordic Naturals gummy fish in tangerine for omegas. It is very high quality and tastes pretty good. Re: the multis, i use the marvel superheros gummies or Little critters. As long as they don't have gross due and trash in them, I feel like they are OK....of course my son is so picky that i am thankful that he takes ANY of them!
  11. Dr. Josephine Elia is at Nemours Dupont in Wilmington DE.
  12. Yes. My son had the same facial tics. Started with the eyes and we had the same results with abx at first. Do NOT wait it out and see if time will tell. Make an appointment TODAY with a PANDAS specialist. It will likely take a couple of months to get in. If it turns out to not be a problem, then you can always cancel, but you will have that safety net. The earlier you catch it the more likely you are to arrest it with medication. Once it jumps the track and gets going, the train is much harder to stop. Early intervention is very valuable! You are welcome to message me if you want help with docs. Warm wishes! -Kath
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