Vitamins

[Guest Stacy]

Hi, everyone. I am new to this forum, although I have been reading posts for quite some time. My son just started the Bonnie G program supplements, and I am wondering how long it will take to see any effects. Last week, I started him on some of the supplements in Chemar's list for tics until I could get Bonnie's. Anyway, his tics became severe right before Christmas, and had only one day of waning from then on. He was relatively mild before, and now it has become almost unbearable as they cause him to break into sweats. He has had TS since he was 5, or at least the symptoms anyway, and we've not noticed that anything he may eat or see has exacerbated them at any time. During this period of waxing, though, TV seems to make it even worse, but they remain just as severe despite anything he eats or doesn't eat. We have eliminated all caffeine and some sugars (which he never really ate much of anyway). At least, the stuff we know contains lots of sugar. But the symptoms are still intense. The doc put him back on Clonidine at night so that he could at least sleep since he gets no rest during the day. He has multiple complex motor and vocal tics, as well as an increasingly bad case of echolalia. I am just looking for any solution to get him back to a tolerable ticcing before his body gives out or I have to put him on a strong medication. Any advice?

[Ronnas]

I only have a second but I would encourage you to read through the threads here and at braintalk and order the back issues of Lattitudes. For us it was a long time before I saw that there may be a connection between my son's tics and food sensitivities. A book called "Is this Your Child" by Dr. Doris Rapp certainly made a big difference for us. I would NEVER have seen a correlation between food sensitivities and my son's tics had I not done a food elimination diet. ew have done many things over the last 3 years but eliminating milk (casein), eggs, chocolate, and corn made the largest and quickest impact for improving behavior and tics with my son. At present my son is doing well...we can rotate most of the offending foods back into his diet...even milk a bit which I thought would NEVER happen and he is doing very well.

 

This was recently posted on braintalk and I thought it was well written...

 

QUOTE from braintalk..." for the right supplement regimen for the individual, one needs to get the correct nutritional testing done. When people say that vitamins have not worked, ask them if they have had the proper clinical testing done and 99% of the time, you will find out that they have not had the testing done and are trying to "experiment" with vitamins on their own. If this is the case, don't blame the supplements for not working. They are using the wrong approach to finding a solution to the problem. Please keep in mind that conventional, traditional medicine does not train physicians to do the proper vitamin testing during medical school. You need to find a physician, usually an alternative medical physician, who has had about a year of extra medical trainging specializing in supplements, to do the tests and to know how to interpret the tests. These physicians are hard to find, but you can start with ACAM.org. Be sure to interview the staff or physician about their training and experience in nutritional supplementation before agreeing to tests. If you can't find someone locally, then the better thing to do is to contact a regional center for vitamin testing, that is, if you can afford it. I highly recommend the Pfeiffer Treatment Center

( http://www.hriptc.org/). They have many years of experience treating all kinds of disorders with supplementation. So they know what tests to order, depending upon the symptoms. I think it is a 2-3 month wait for an appointment and you need to fill out forms in advance. All of this is described on their web site. They also have traveling clinics, so it may not be necessary to go to Illinois. If I had followed my own advice initiallly, then I would have saved my family from suffering for over eight years. I just didn't know how or where to find appropriate help.

 

Please keep in mind that when a child needs vitamin supplementation, it does not mean that they are eating a poor diet. There are many medical reasons why a child could be deficient in all vitamins (intestinal infections, malabsorption disorders, genetic disorders) or deficient in a critical subset of nutrients (pyroluria, allergies, viral infections, bacterial infections, stress, long-term medications such as pyschotropics, genetic disorders), etc. Once a supplement plan works, you will really need to spend the time to find out why the child was vitamin deficient in the first place, to make sure you can eliminate allergies, intestinal parasites or infections. There isn't much that can be done if the true nature is genetic, but a treatment, even if it is for life, is better than no treatment at all." QUOTE from braintalk

[mmazz]

Good advise the point is well taken.

 

Marie

[Claire]

Why not use something non-pharmaceutical at night? We have threads on this. From teas and baths with epsom salts to 5HTP to melatonin. Does he sleep with a night light? If so, the body won't make enough melatonin which then interferes with ability to sleep.

 

The list that Ronna's posted is one of 3 lists that Sheila Rogers (Latitudes editor) posted at the top of this forum--in case you can't find a doctor on that list. A good doctor makes a huge difference.

 

I concur with Ronna in that we never saw a correlation with foods (in our case more fidetiness than tics) until my son had a horrible flu and ate nothing for 3 days. All the symptoms disappeared then (until he ate again). Then after testing and removal of foods, his symptoms disappeared again. This doesn't mean it is an issue for your child, but just that no noticeable symptoms when eating things doesn't rule it out. Most of us were surprised by the correlations and improvement (we have a survey thread on this as I suspect you saw).

 

Also, the onset right before Christmas....was he watching a lot more TV (or computer) during the vacation leading up to Christmas? TV/computer is a big trigger from the surveys/posts on this forum, and from your comments about it being worse during TV (which doesn't always happen either), I think you have a good indicator that this is a factor. A 'no screens' week--with your child's cooperation so it doesn't feel punitive, will let you know for sure. In some ways this is like a food elimination diet, where it takes a week for the nervous system to settle and the tics to go away.

 

http://www.latitudes.org/forums/index.php?...p?showtopic=852

 

Claire