Frustrated with "The Establishment"

[Guest M.C.]

Here's my story, for what it is worth. This is not intended to blame, but rather to get my experiences out there for others who are also trying to figure things out:

 

My son had his first cavity filled around the time he was 4. Shortly thereafter, his eye-blinking and lip-curling started. He complained to his first-grade teacher that his eyes were "hot". She had him soak them in wet paper-towel. The school nurse tested his eyes and informed me that his vision was fine. He also had a throat-clearing thing. My husband took him to the pediatrician and, upon hearing that my husband had allergies, put my son on asthma meds and an inhaler,which sent him bouncing off the walls. I went back to the doctor after stopping the meds, wondering if this eyed-blinking was blepharitis, as I could find no other info about what might be causing this. She agreed with me and gave him antibiotic drops, which had no effect.

 

My son had another cavity at 7-and-a-half. I asked about the dangers of mercury fillings, and the dentist discounted my concerns. I went ahead with the mercury fillings. Shortly thereafter his head-knocking, shoulder-jerking started in. I took him to the doctor, suggesting that this might be Tourette. She diagnosed "multiple tic disorder" and referred me to a neurologist, who diagnosed Tourette. I went back to my pediatrician and neurolgist and asked about having allergy testing done... both of them said, in effect, that that would be pointless. (This is from the same doctor who would, by her own admission, would see no problem at all with putting him on chlonodine.)

 

I have read everything online I could about Tourette Syndrome, including Bonnie's recommendations for supplements. For my son, 3 supplements seem to be doing quite a bit of good: no-flush niacin, choline, and pycnoginol. I occasionally add a b-complex, co-q10, and magnesium. I am slowing switching over to Feingold-approved foods, and I am suspicious of MSG, Dyes in food, high fructose corn syrup (which has replaced virtually all sugar in MOST foods), vitamin A palimate, and salycilates in fruits. By the way, I have never been able to give my son multivitamins, because they always gave him nosebleeds. For this, I have suspected Vitamin A and Vitamin C.... I can't figure it out, but there must be something there.

 

We do not have any environmental physicians in my state, from what I have been able to tell from my research. I no longer want to go to anyone with M.D. after their names for help with this. I have lost confidence in the establishment.

 

I am thankful for the internet and for those people online who are truly trying do do something to help Tourette Syndrome patients to get help with their symptoms that does not rely on pharmaceutical solutions as the only answer.

 

Finally, a couple of questions, if any of you can answer:

 

1. I have read that no-flush niacin is safe. Does anyone have an idea of how high a dose I can go with with an 80-pound child? I have generally been using 500 mg twice per day, but 1500 mg gives me much better results. I'm not totally convinced that the choline is doing as much good, but I have been giving 500 mg per day.

 

2. Do all dentists have alternatives to the traditional mercury fillings, or would I have to seek out a special dentist for this, as well? Has anyone else come to suspect mercury fillings as a contributing factor in T.S. tics?

 

M.C.

[Chemar]

Hi MC

 

I am not going to even start to try to describe my gripes against the conventional practice of medicine......but I know exactly what you are feeling. I even considered legal action after what happened to my son...but instead I just turned to the excellent treatments and healthy diet, environment etc and our whole family has benefitted!!

 

As to the mercury....YES I firmly believe that mercury would have a detrimental effect in TS and in general.

 

We only found a few doctors who were mercury free...including our wonderful pediatric dentist.

 

What annoys me most about many (not all, thankfully) conventional practitioners is that they are so quick to call anything that they know nothing about "kooky" or quack stuff.

 

Well their so-called "quack-stuff" has had a WONDERFULLY positive effect for my son's TS/OCD etc........whereas their drugs barely helped his symptoms, brought him a bunch more from side effects and then nearly killed him!!!

 

ok .......nuff said before I start ranting

[Guest Jeff]

M.C. - We have had great success with the Feingold program. We have virtually eliminated our TS tics by following Feingold. Stick with it for at least a few weeks. The results can be incredible. It's difficult at first, but once you establish a new shopping list, it's not too bad. Difficult times are Easter, Halloween, Valentines Day, Christmas, etc. We have to get creative sometime to limit the intake of the artificial flavors and colors.

We also react to Corn Syrup. That one is tough because it is used in so many products.

 

If you have any specific questions about Feingold, feel free to ask. Have you visited the Members Bulletin Board on Feingold.org ?? It's a very active forum where FG-ers exchange ideas and support each other. There's also a Recipe Board where people post FG-approved recipes.

 

Best of luck. Jeff

[Chemar]

Hi Jeff

we are not "on" a Feingold program as such, but absolutely agree with his recommendations on what to avoid.

 

That Corn Syrup is the toughest one, as, as you have stated, it is added to almost everything these days ......... we especially find my son reacts to the High Fructose Corn Syrup most of all.......all colorings(blue & red seem to REALLY trigger tics) and artificial sweeteners..... Aspartame (NutraSweet)contains formaldehyde and Sucralose(Splenda) is chlorinated sugar

both of those chemicals are known tic triggers......

 

the list goes on and on on the junk they stick in food that messes with people's brains.

 

So glad to hear the success you are having with Feingold......isnt it great when you find a program that works......for us it is the careful dietary monitoring and supplement addition, as well as avoiding environmental triggers.

[Sheila]

Dear MC--where do you live? Let's try to find a practitioner who can help you. It's true that dental work can trigger tics. In fact, aside from the serious mercury issue, we have had reports of people finding that even dental spacers or braces set off tics that went away when they were removed. I hope you will get back to me. Sheila

[Guest M.C.]

Thanks, Sheila. I finally located the name of a doctor in my area who will do a RAST blood test, and also does acupuncture. I was talking to someone who had just learned her child a food allergy, and when I asked, she told me all about this doctor.

 

The information about the braces was very timely, as I was getting close to bringing my son in for an orthodontic check, by recommendation of his dentist. I think I'm going to wait a bit before I do.

[Claire]

Shiela,

 

As I have time, I keep reading more on this site. Your comment about braces setting off tics is interesting. I actually read in a book on OCD that children with OCD who have braces cannot take certain OCD medications. Sorry that I can't remember the source!

 

My son has braces (this goes on and on, it is a moving target--the bands fit poorly so they keep restarting him, then another bracket breaks off), and I wonder if this is why he has gotten more photosensitive over the past year, with the associated tics.

[Chemar]

A few years back it was suggested that my son may need braces.

 

After reading a lot about braces in general and their effect on TS, OCD etc

I chatted with my son about it and we mutually decided he should rather have crooked teeth than have braces!!!

 

Guess what.......his teeth straightened as the others came in!

 

I am so glad we decided against braces.