Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

Recent Profile Visitors

7,570 profile views

Claire's Achievements

  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. Claire
  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 am lucky. We test annually for deficiencies (Spectracell FIA 5000 blood test) to make sure his cell levels are okay for all his vitamins. I never did do Bonnie's vitamins, instead did a customized program with our doctor and had the vitamins compounded at Village Green Pharmacy (need doc's signature) for fewer capsules. (kept calcium/mag/fishoils separate.) Don't check in very often here...good luck! Claire
  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 distance (even non-CRT flicker kind) in a dark room. I just think of the 'perfect storm' for 1990's kids and my own son back then: mercury/thimerisol in vaccines (a major contributor to photosensitivity) combined with the screen size increase of TV CRT screens and the up close and newly prevalent use of computers and video games in the homes. Now, I thank God that LCD/HDTV/Plasma technology have mostly replaced CRT screens. And most childhood vaccines (still watch some of those flu shots and some TB) are without thimerisol. I think at least one group of tic tendencies will be greatly reduced in the next decade as a result. Claire
  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 years. Anyway, most people seemed to find that after a week the tic consequences of a light flicker trigger seemed to dissipate. As for what causes light sensitivity, this is what I found - but I haven't looked at this in years. 1. High Mercury levels (mercury toxicity is known for causing light sensitivity -google it). So many tests here, - non-invasive urine test for high porphryn levels. Kim found: laboratoire Philippe Auguste [contact@labbio.net] for $110 or so, plus a couple bucks shipping. -Great Smokies blood test (false negatives though) - Toxic metals hair tests (false negatives though) Plusses and minuses, so I like the urine test 2. Pyroluria urine test (think Chemar grabbed this - it is the one I used) DIRECT HEALTHCARE ACCESS II LABORATORY Tel. 847-222-9546 email: dha1825@aol.com Mostly I think low B6 from pyroluria caused the light sensitivity 3. riboflavin (B2) deficiency makes you light sensitive I like the www.spectracell.com FIA 5000 blood test (no doctors sig needed unless you want insurance to pay for it) for vitamin and antioxidant deficiencies. Antioxidant deficiencies can indicate likelihood of high metals too. 4. Yeast overgrowth. Anecdotal feedback here only. My son was low in b2, had pyroluria, had high yeast, had high mercury, had low antioxidants. I never supplemented my son without tests to verify what he needed. After 2 years of no improvement in light sensitivity - his only tic trigger starting age 8 to ~ 10 years, we did these tests and within 6 months of supplementation no more sensitivity. Zero tics for 4.5 years now. My old threads have lots of details and others' experience. Good luck! Claire
  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 original version free on the internet: http://www.hit-country-music-lyrics.com/Ma...way-Lyrics.html excerpts "This world's gone crazy and it's hard to believe that tomorrow will be better than today Believe it anyway "You can chase a dream that seems so out of reach and you know it might not ever come your way Dream it anyway" -Claire
  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 too many vaccines, too soon http://www.cnn.com/2008/US/04/02/mccarthy....ment/index.html
  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 but wouldn't do it cuz of the mercury risk. She proceeded to tell me that thimerisol had been out of all vaccines since 2003/2004, I forget which. I said that simply wasn't true. I knew for a fact it was in some flu vaccines. Lo and behold, instead of walking away labeling me as a hypochrondriac nut case, she printed out information on a ton of vaccines and came back and said, so some do, some don't. She then showed me 2 types of tetanus vaccines and said that oddly, one had it one didn't and would I want the one that did not have it. I of course agreed. She said to make sure the nurse double checked the one used to make sure that it didn't have it. I know that the issues with vaccines go beyond thimerisol. But since I have an "X-game" son, I would like him to be up to date on tetanus, which I can now do in a year or so when he is due again. Thanks for the post. 2.44x. We KNEW that there was a link for many. The regulars know me, but the newcomers may not know that I attribute the fundamental cause of my son's tics years ago to his toxic mercury levels -which causes a cascade of immune issues - and their subsequent cure to the removal of the mercury, in his case through gradual anti-oxidant supplementation for his antioxidant deficiencies. I believe his photosensitivity (to computers and flicker) was a direct impact of the mercury levels. In fact, light sensitivity is a known symptom of toxic mercury levels. I still love the spectracell.com FIA 5000 test for antioxidant levels, and the Great Plains OAT urine test for glutathione levels. According to my DAN doctor, low antioxidant levels can be a big indicator that your child's body did not have the means to pass the mercury out of his or her system. Claire
  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 of our own testing now, but I still check with my son's doctor each year. Good luck. Claire
  • Create New...