Claire
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Posts posted by Claire
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Was your daughter's EEG done with flashing lights as a stimulus? (ie checking for a photosensitive seizure disorder).
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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
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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
Can someone explain the role of zinc and B6 in pyroluria. I'm thinking of getting ds tested for this(and probably dh, too). I read that if you have pyroluria that you shouldn't have copper. Is that true? How do you avoid an element like copper anyway?Also, I have heard of some kids getting over 50 mg of B6. Is that safe? How much does your child get?
I currently give ds 10 mg of B6 a day(it is in his neuroscience supplement combined with some other aminos) but couldn't find supplements that were small doses. Most of them were 50 or 100 mg of B6, I'm concerned about giving him too much B6. Bonnie's vitamins have 50 mg so I'd be giving him a total of 60 mg if I started him on Bonnie's and gave him the recommended dosage for his weight.
Thanks,
Bonnie
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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
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We have traveled twice this summer and both times my son slowly improved to the point that by the time we got home his tics were gone. We just returned from our second trip and my sons face is completely calm - before he had constant blinking that later switched to different sorts of facial grimacing that were always there. His head nodding also stopped. I am dreading its all going to come back now that we are home.
I was able to stay on his diet while we were gone- the only thing I did different on both trips was he had organic wheat bread every day( I usually limit this) because we were visiting relatives and we were eating hamburgers, sandwiches etc. Am I crazy or could the wheat actually be helping him in some way?
The other thought I always have lingering in my mind is could we have a mold problem in my house. We bought our house new 10 years ago and over the years we have had a problem with our upstairs bathroom toilet overflowing and then the water leaks through the ceiling and down to the kitchen entrance/hallway. We've never had it fixed and it happens a couple of times a year. I know its expensive to test and treat for mold so have put it off. I have not seen any visible mold in our house. Does anyone know if the test kits you get at Lowes are reliable to tell if we have a problem?
Any other ideas? Thanks everyone, Mary
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
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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
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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
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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
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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!
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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.
AFP Peptizade (gluten/casein)
Zyne Prime (carbs, lactose)
Claire
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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
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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
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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
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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
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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
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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 limits now. But we still don't use CRT screens (what's the point?). We give him 1/3 the vitamins we used to now and still retest annually to make sure he is in sync.
My 'tests' thread is my favorite - I believe that these are indeed many times 'children with starving brains' and that proper supplementation can help a ton. And that programs need customization. The screen removal won't help every kid, nor is it a long term solution. But it does at least show you if it is a factor, and demonstrates that this is not just genetic and unavoidable for all.
Good luck!
Claire
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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 treatment very quickly - he wanted virtually no carbs for my active son and started him on diflucan, a toxic anti-fungal. My point is to trust your instincts and watch your child!!
Claire
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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 sodium benzoate.
...This significant new research .. provides a clear demonstration that changes in behaviour can be detected in three-year-old and eight-year-old children.
...funded by ..the Food Standards Agency ... involved studying levels of hyperactivity in 153 three-year-olds and 144 eight-year-olds... The children ... represent the full range of behaviour, from normal through to hyperactive...
The children’s families were asked to put them on a diet free from the additives ... Over a six-week period the children were then given a drink each day which either contained one of two mixtures of food colours and benzoate preservative, or just fruit juice – with all the drinks looking and tasting identical.
Hyperactivity is a behaviour indicated by increased movement, impulsivity and inattention.
http://www.myomancy.com/2007/09/food-color...d-hyperactivity
Part of the research was to see if genetic make-up played a role in how children reacted to the drinks. They found that children with genes relating to impair histamine clearance (histamine N-methyltransferase, HNMT Thr105le and/or HNMT T939C). Children with these genes did show a significantly greater reaction to the both mixtures.
This last link they is from a different study.
http://www.smh.com.au/news/world/children-...8783287866.html
Children who eat junk food 'worst behaved'
A recent British survey suggests children who regularly gorge on junk food are nearly three times more likely to behave badly than those who avoid it completely.
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Yes, he has environmental allergies, forgot to mention that, nice catch!
I will ask about the antibiotics...
Thanks!
Claire
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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 such as zinc, certain EFA's etc... can also make a child more susceptible.
My question is not about tics, and not about solutions for eczema per se (e.g. mild soaps, not hot water, some sunlight etc). And certainly they are going to remove the allergic triggers that might aggravate the eczema. Some of you may remember that my son's eczema cleared with removal of wheat for example).
It is clear to me that this child has a very depressed immune system. I wonder if you all have input on things that are known to cause that that if corrected using alternative methods, would help strengthen it. This family is unlikely to try NAET or any energy treatments at this point. I am surprised they even did this testing, but they were desperate. They have a homeopath who seems open minded enough to expand their testing protocal based on the parent's input, so I am trying to help them out. I feel so badly for the child: to me this constant scratching/itching is probably as stressful as constant ticcing!
From our experience and some posters, these are some things I know to test for that depress an immune system:
Toxic metals/oxidative stress
Yeast overgrowth
Food allergies (which are both cause and effect here)
Vitamin deficiencies
Undermethylation
Parasites
Is there anything that you think I have missed? Also, do you think a 4 year old could still have metal issues? Aren't they virtually gone from childhood vaccines now, (except the flu one, I need to ask whether they do that for him?)
Thanks a million in advance...
Claire
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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 good return policy? i.e. try one size for 30 days, then trade down if issues?
Claire
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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 DMSA/DMTP on antioxidants is not the same. Though chelation does sometimes involve alphalipoic acid also.
I just found out that the computer at school that had his LCD monitor has been messed up and so he has been using a CRT monitor for a couple of months with no issues. Yippee. The high school has all LCD monitors anyway, so only a few months left of CRT.
Cheers,
Claire
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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.
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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
tic cough or allergy cough?
in Tourette Syndrome and Tics
Posted
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