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Sylvia

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  1. Any more info on this? I have not re-ordered yet, but everything I have read points to xylitol being good at keeping strep at bay. My mom (who is 77 today!) has had lifelong, untreated sinsus problems. They got much worse later in life, so I am concerned for the rest of us not to go down that road. Thanks!
  2. My doctor recommends 10 mg per kilo per day. and start to taper after 4 weeks with no improvement. Thank you!!!
  3. We have used Xlear off and on for years: http://www.xlear.com/nasal-spray.aspx It is supposed to be great for clearing the sinuses of strep. I now realize it has been a while since we have used it, this thread is a great reminder to re-order!
  4. This is a very timely thread for me. My 13 year old with severe autism made great improvements on Amoxicillin, but now a year later, we have slid backwards quite a bit. We tried Augmentin, but things are still bad. Not horrible, but we are going backwards. I am thinking we need to pull out the big guns; azith. What dose is high dose? Is Azith very expensive? Thanks for the valuable input!
  5. Its been my experience that many doctors believe their job will be in danger if they do help us. I've had a few that flat out told me they were not going to "risk their career" to help me. And I know our pediatrician has caught more than a little flack from the other doctors in his practice for helping us. Yes, you are absolutely right. In the autism community it is known as "the Wakefield effect". Some of the only few mainstream docs that were actually helping families totally did an about face after the Wakefield witch hunt. It is very discouraging, and I can't really blame many
  6. Sorry to hear, but not surprised. Isn't it incredible that someone who doesn't have any answers, can't provide you with any help, and is rude on top it - she gets to collect an enormous paycheck?! In most other fields, if you completely suck at what you do, it would mean you couldn't make a living. But for many of these doctors, they can fail us in every possible way, and it doesn't matter. They are secure in their jobs forever! What a racket!
  7. That is a relief that everything seems alright now. I will keep my fingers crossed for you guys!
  8. Oh, this makes me so infuriated! Vaccines work by tricking/stimulating the immune system. This is very risky for kids with PANDAS. As SarahJane pointed out, those were seven vaccines given in ONE day! MMR is three, DTaP is three and chicken pox = 7. The fact that this doctor bullied you into something you were not comfortable with is inexusable! My two boys are vaccine injured resulting in autism and PANDAS. My youngest had textbook-example symptoms of encephalopathy; high pitched screaming with arched back, projectile vomiting and fever. His doc said this was a normal vaccine reaction and
  9. I have been reading about Dextromethorphan (Delsym) on the Parkinson's boards since my mom has PD. I also have two boys with autism/PANDAS. The PD people are using Dextro because it increases Dopamine. My youngest son does terrible on anything that boosts Dopamine. Are any kids here that are doing well on Delsym have any issues with high Dopamine? Thanks, Sylvia
  10. Us too. My 13 year old with autism/PANDAS reacted terribly to Theanine. After much reading, I finally came across the dopamine connection as well. So frustrating that so many supposed "calming" supplements drive Nick crazy. Theanine is a definite no-no for us. Sylvia
  11. My oldest son has had the mousey smelling hair for years. Even right after a bath or shower, his hair does not smell fresh. I have noticed this since at least 7 years old, and he is now 15. Since hitting puberty a few years ago, the problem is worse. He has a diagnosis of PDD, but we are treating for PANDAS and looking into Lyme. His little brother who has severe autism (non-verbal), severe PANDAS symptoms and possible Lyme, does NOT have the mousey hair problem. He smells fresh as a daisy after a shower. So I am always intrigued by the hair issue.
  12. I am sorry you are going through this, I can imagine what a sensitive subject this can be for a mother of a teen boy. I don't have any helpful advise except to say that intense sexual thoughts are pretty common in teenage boys, but for many of our kids they have lost the filter that allows them to make good choices/judgements. In the autism world, high testosterone is discussed a lot. I don't know if you have looked at any of the Geier's work: http://autismmedia.org/media4.html Outside of that, perhaps one of the mild meds such as Tenex, which is a blood pressure med used for impulsiv
  13. I wanted to chime in that any type of calcium supplement will cause my youngest son to rage. It was one of the first triggers I found. He also reacts to many other things such dyes, sugars, HFCS, MSG, but calcium is the worst. I am on a lot of the autism groups, and there is a small subset of kids that react badly to calcium. I started him on the GFCF diet when he was 1, and I desperately tried every type of calcium supp on the market since he wasn't eating any dairy, but they all sent him bezerk. Finally I gave up, and he gets no supplemental calcium. But he still tests normal to high on bloo
  14. Great tip about borrowing from TACA, they are awesome! I bought them last month, but have only watched the Cunningham/Swedo presentations so far. I won't have time this week, but I will definitely be watching them all next week!
  15. I can't even imagine how traumatic this was for everyone involved! I am sending positive thoughts to your family tonight!
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