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Everything posted by Claire

  1. Patty, It is important to give probiotics (or yogurt if you don't want the pills) 2 hours after each dose of antibiotics to keep the good flora balance (and avoid yeast issues). Even our mainstream doctor recommends this. Claire
  2. Was your daughter's EEG done with flashing lights as a stimulus? (ie checking for a photosensitive seizure disorder).
  3. It could be an allergy cough or possibly lingering bronchitis, which is characterized by a dry cough that lingers 2 weeks after the cold is gone. And sometimes viral coughs just linger beyond symptoms. Time will tell. A nightime HEPA air filter would likely help an allergy cough. Does he cough in the middle of the night? That might indicate something non-tic related, since tics don't tend to occur in the middle of the night while sleeping. See if herbal tea with honey helps sooth the throat and reduce the coughing. I had a bad cough and it helped a lot - and I don't 'do' sweets.
  4. My child gets 25 mg B6 in Country Life's "Basic-B caps". Took me a long time to find a vitamin supplement with only 25 mg, which I was comfortable with for the long term. You will need to search the site for explanations on pyroluria, but baically the disorder causes zinc and B6 deficiencies. Harmless, non-invasive urine test. I personally think it is a secondary disorder related to other immune issues and maybe oxidative stress, but still if you have it, good to correct the deficiencies. We still do 50 mg zinc/dose. But my son is a teen and only takes vitamins 3 days a week now if I a
  5. Absolutely for a child with photosensitivity as a tic trigger, the flashing of fireworks - especially the contrast of the dark night sky with the serial flashes can be a tic trigger. Excitement, and that can be a factor anytime for some, but the photosentivity/flash trigger is very real for a group of kids and I would never assume it was just the excitement. Easiest to tell if they were waning with tics prior to the event. If in doubt, stay away from screens for a week then have them watch Star Wars Episode 2 with the laser fighting in the night on a large screen from a semi-near dista
  6. Another thought is whether he had greatly reduced video game/computer playing and/or TV watching while gone, or whether they had LCD screens instead of the CRT screens. Claire
  7. LCD TV monitors do not have flickering like the CRT TV monitors do, and thus better for those where that is a tic trigger. Smaller screens are less of a trigger than large ones, so you may consider that factor also. Plasma is probably fine re no flicker, but I never tested them out. Claire
  8. Hi, Lurker just let me know you are discussing this. I think Chemar's search turned up some of my threads, thanks Chemar. I am on major deadline for the next 2 days, so fast as I can... Basically the flickering of light seemed to be a trigger for a number of families (I had a survey thread on that). I suspect these days with LCD monitors more prevalent than 6 years ago when I first noticed it for my son with CRT screen, life has gotten MUCH better for many children. Hallelujah. Plus less thimerisol/mercury in vaccines, so I suspect this is less an issue for kids born in recent yea
  9. Thanks so much for posting this Chemar. Sort of bittersweet. It provides hope, and yet they still contain admission of impact to impacting the 1 in 5000 with the disease. Also, I have to overcome my concern that this is being done simply to appear to include these concerned voices by having some token representation. Along those lines, I heard the song "Anyway" for the first time this week. It was very inspiring to me - I thought it might in turn be helpful to others here as they move for better health for their children and even for others. You can even listen to the full origi
  10. I hope you are doing probiotics a couple of hours after the zithromax. As for the rest, don't have much experience, will leave it to the others. Good luck!
  11. Have you tried Houston nutraceuticals? We have used them for years. They have xylitol-based chewables for kids. Pfeiffer clinic once said these enzymes seemed to have better results with kids, so I went with them and never really researched others. http://www.houstonni.com/ AFP Peptizade (gluten/casein) Zyne Prime (carbs, lactose) Claire
  12. Hi all...Have you been following the CNN autism series? Jenny is putting together a documentary on this, with Jim Carey's support. I keep hoping someone will get them to mention tic syndromes as part of the documentary! Star power might get this the attention it deserves. I do want to shout this from the rooftops, as she says... Claire Jenny McCarthy: My son's recovery from autism Story Highlights McCarthy believes diet and vitamins helped her son recover from autism Vaccines played a role in son's autism, she says McCarthy and Jim Carrey think children being given
  13. Q's mom, You are a wonderful mother, and your child is soooo lucky for your diligence. You know you have given him the opportunity for an easier life. Tics are stressful on those young bodies! It is wonderful that you posted what worked for you. It is interesting to see how much casein has affected a number of kids with tics. I love what you did, it is completely awesome!!!! I hope your story is now an inspiration to others, just as you learned from others. 'Pay it forward', just like in the movie I loved Best, Claire
  14. Kim, I tried to find David's direct email, both at the Huffington Post and at the NYT, where he also writes. No such luck. Someone commented on Oprah. Was David ever on Oprah? I wish he would champion the tic cause a bit more, which is why I tried to make direct contact. Thanks a million for posting these articles Kim!! Wonderful article, something all with kids with tics from that era should bring to their next doctor visit. Interesting experience for me last week. I was at a doctor's office (not my normal doctor) that asked about my latest tetanus update and I said I was due
  15. Carolyn hit on a big one. If you order the tests yourself, insurance won't cover it. If an MD orders it, they will. Unless you have an HMO and this isn't covered anyway. Worth checking out. Each lab typically sends an explanation of the results with the results. Some, like a vitamin deficiency, are potentially pretty straight forward. Others, like heavy metals, would be better addressed under guidance. A good doctor is worth his or her weight in gold. Others can be a hindrance or worse. No matter what you do, trust your own instincts when it comes to 'treatments'. We do some o
  16. We tested for yeast with the Great Plains OAT (Organic Acid Test) urine test. Yes he was high. We tried Nystatin. He rarely gets sugar. Nothing seemed to change the measurement. I finally decided to let it go. It has been 2 years, but we will test again soon. I think supplementing with the glutathione cream (he was low in glutathione) helped with the metals. The OAT test showed that also. Claire
  17. Computer games stopped the tics completely, but I knew I couldn't do that forever. So we went to a DAN doctor. He tested him and found high mercury, certain vitamin deficiencies and low antioxidant levels, plus food allergies. We eliminated the foods for a while. He eats them now. We supplemented for the deficient vitamins and antioxidants. The antioxidants brought down his mercury levels. Personally I think high metals (oxidative stress), low vitamins, and screens impact a lot of kids. Once you rebuild the immune system and remove the metals, the screens can be managed. He has no limit
  18. Our insurance covered the doctor and the tests. I think most insurance does require that you use an "MD". All except Great Plains were out of network, so the coverage was not as high. I found more short appointments with an MD were covered ie 2 at $180 each, versus one long one @ $360 was considered excessive. We did most of our follow-up by phone, so I could split the time. We succeeded in our goal with our DAN/environmental doctor, and still do annual testing. On the other hand, once I got a horrible environmental doctor, really gouged us and was extreme in his methods. Stopped his tr
  19. Hmm, the study link Kim posted result appears to be posted May 9, is there an error in the date? Here is the link to the study provided in the Feingold newsletter yesterday along with some excerpts, enough to not break copyright. http://www.soton.ac.uk/mediacentre/news/2007/sep/07_99.shtml Major study indicates a link between hyperactivity in children and certain food additives A study by researchers at the University of Southampton has shown evidence of increased levels of hyperactivity in young children consuming mixtures of some artificial food colours and the preservative sodi
  20. Yes, he has environmental allergies, forgot to mention that, nice catch! I will ask about the antibiotics... Thanks! Claire
  21. Hi all, how are you doing? Things are going great with my son, about to do his annual check-up, but first half shows everything in line. We continue the vitamin supplementation, and will retest for allergies. I have a friend whose 3 year old (almost 4 year old) has horrible eczema all over most of her body. The poor kid is constantly scratching. They knew he had some food allergies and are doing more tests...so far the early results have shown allergies to an incredible number of things. They are waiting for the FIA 5000 vitamin and antioxidant levels test, since vitamin deficiencies
  22. Hi Alison! I rarely check in anymore...sorry. Been working 7 days a week for months now, major project. I did scan for 'photosensitivy' though! The plasma screen should be just fine, since they do not flicker. However, the larger screen means a bit more impact from graphic movement. When my son had this issue, he saw a movie on a very large plasma screen at his friends and reacted. But that is anecdotal. I always assumed it was just the screen size. I just wouldn't go overboard there. The trouble is, you buy these for a good 10 years and you want to get a good one. Is there a g
  23. I would start with the porphyrin test over the hair test due to false negative on hair tests for kids that don't excrete metals well. I don't know what else it tests for, sorry, we were just interested in mercury/lead. Or do the Spectracell test first to see if he is low in antioxidants, which means higher metals are more likely. We didn't chelate for mercury (Carolyn and Andy's son did). That is a personal decision with your doctor. We just supplemented for the antioxidants where he was low per the Spectracell test (in his case, cysteine and alphalipoic acid). This is different from DMS
  24. Deanna, He does not have to be off supplements for the Spectracell FIA 5000 test. Nor for the hair metals or porphyrin tests. Yes, of course I know how hard it is to do without screens for 7 days. This may not be right for you. Good luck! Claire ps Definitely don't get the flourescent bulbs. I get the GE full spectrum brand that is at most large drug stores. Don't know the others.
  25. Kim, I hadn't heard the term 'scotopic lenses', but definitely it is the same "Irlen", so it must be the same. Sheila Rogers pointed me to her, and I talked to her on the phone once. Thanks, Claire
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