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Everything posted by Sylvia

  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!
  16. Thanks Norcalmom! My son has so much in common with the kids in that thread!
  17. Wow, VERY interesting thread! I have two boys with autism/PANDAS, and I usually post comments and quesitons about my youngest and most severely effected son. But my oldest son made huge improvements on handwriting recently since starting Augementin 500mg two times a day. I hadn't really seen any big improvements, then it hit me - his handwritng was PERFECT! Beautiful really! That just blew me away since he has always had problems with tracing over and over certain letters or words, making his periods the size of bowling balls, not spacing his senteneces correctly, etc. I had been hopi
  18. Same boat, we started our youngest on 1000mg twice a day at the begining of summer with very good results, so we switched to 500mg Augmentin twice a day thinking that would be better. He regressed in several areas, but not all. I don't know if it was because we didn't go up high enough with the Augmentin - but his doc said since it wasn't active strep 500 2x day should be enough. After a month I have just switched him back to 1000mg Amoxicillin again. It has been almost a week back and not much change. Ugh! My concern with Augmentin was that it can cause an increase in ammonia. So I am gi
  19. B-50 complex is always a part of our regimine. Right now we are using Thorne brand. We have never had a problems with any of the B vitamins. (knock wood!)
  20. They most probably were giving your wrong information, unfortunetly. If you want to know for sure, you could ask for the lot number and package insert that comes with all vaccines. It is extremely disturbing to me that doctor office staff are so often wrong about this. With the vast majority (about 90%) of flu vaccines NOT mercury free, it amazes me that so many will tell their patients wrong information without concern. I most certainly hope you did indeed receive a mercury free shot, but odds are that you did not. http://www.livestrong.com/article/76622-flu-shot-ingredients/ "All
  21. Here is one of the studies I remember that links mercury to autoimmune disease: http://www.umm.edu/news/releases/mercury.htm But mercury is so toxic that it can damage in so many ways. It has no business in medical products.
  22. Mercury can cause or aggrivate autoimmune disorders, so most for most families here, mercury would be the last thing on earth they would want. Over 80% of all flu shots have the full amount of thimerosal (mercury based preservative)in them. My kids are already vaccine injured, we have given enough to the herd, no more shots for us either! That's all we need is for me to go down with a vaccine induced neurological injury! OYE!
  23. I am so glad you were able to get a hold of information that enabled you to make an informed choice. I had no idea of the risks involved 11 years ago, and would have done things so differently had I known. I would do almost anything to go back and do things over with my babies. I wish you the very best!
  24. There are some serious problems with the Whooping Cough vaccine: http://www.nvic.org/NVIC-Vaccine-News/July-2010/Whooping-Cough-Outbreaks-Vaccine-Failures.aspx
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