New here, need some advice please!

[faith]

Mom and Dad,

The part about the birthday parties rang a bell for me. You'd be surprised what junk is disguised in what you think is "food". Anyway, you said "he didn't have anything he doesn't normally eat", but having ALOT of stuff all at once could be a problem--like a little of this and a little of that adds up to alot of @#$%.! Even pizza could be a problem if he has a sensitivity to wheat or dairy. You may have to tighten up a little more to see some real results, not just the obvious candy and cakes. Please keep us posted, I'd be interested to know how he does.

 

 

Jeff,

Just curious, I know you are very well versed in the artificial stuff. I'm feel my son's vocal is getting a little more prominent than usual, and the day I felt that way I know I allowed a "red" ice stick at his recreation camp (he also said he had 5 pcs. of gum and smarties.). Do you think that could cause this problem and last for days (its been three so far)? Usually I give him Edy's fruit ices at home. .................Do your girls experience tics at times, but then subside pretty quickly after tightening up again? I know you have mentioned in the past that things have been well for about five years now. I feel my son is doing quite well, but this vocal is sticking around the most. I kind of felt he was winding down on it, but feel like he's doing alot more around the house (its like a fake loud laugh). What do you think about the "red" ice?

 

Thanks

Faith

[Jeff]

Hi Faith, Sorry - I haven't checked in for a while. Yes, the red ice stick, gum, and smarties would definitely have an effect on his tics, if he reacts to artificial colors. Those kinds of foods would definitely have an effect on me and my daughters. The effects would last a few days, and then go away, as long as they kept a clean diet. That was always a comforting thing for us.. to know that the tics would subside after a few days, as long as they avoided the colors. Now that they are 13 and 15 years old, they are able to tolerate more of the artificial colors and flavors, although they still are affected.

It was hard at first to avoid the colors, as they are in so many things that kids love to eat! But we gradually found natural replacements for many of those foods, and the girls got used to the restrictions.

Read the labels, even on the Edy's... if you see anything like Red #40 or Yellow #5, avoid them.... watch out for cereals, ice cream, cookies, and other candies too. And many of those "fruit" drinks are loaded with colors.... stick with Juicy Juice, or other 100% fruit drinks...

[faith]

Thanks Jeff, it helps to know what has been working for others on a long term basis, and your observances with the artificial stuff is really helpful. It just boosts my confidence that this is not just all a coincidence.

 

I think after a few days, I think the vocal is diminishing, he seems to hardly do it all when others are around during the day now (I really thought he was that last few days after the ice), but I will hear him let some out at night alone in his room. And yes, I did see that the Edy's cherry flavor uses the red#40, so now I will justy get the natural grape.

 

Its hard to be so observant, but necessary, because I could see where something could be missed and it would be easy to just throw up your arms and say, "oh, this is not working".

 

thanks

Faith

[Caryn]

Hi Faith,

We just returned from vacation and we too had a few episodes with food coloring. (Our ds ate some skittles without our knowledge) and that set him off for a couple of days. With the food colors and with corn we notice that he gets very goofy--spacey--down-right irritating to be around even after a little bit, and then the side effects don't seem to wear off until almost two days later (although they do wane.) Do you also notice a change in behavior? My ds is only 4 1/2, so part of it may be his immaturity-- you know, thinking that he is being funny. But it is amazing the difference in him when he is off the stuff.

 

Jeff,

Do you have some good sources that I could read about food colorings?

Thanks.

 

We are also starting to use taurine with mag. every day and we have noticed our ds has a much easier time sleeping too. He has actually started taking naps again (on three or four occasions in the last two weeks) for the first time in over a year. We have found success with taurine.

Caryn

[Jeff]

Hi Caryn, The best source I can tell you of for info on artificial colors, flavors, etc, is the Feingold organization (feingold.org) We discovered Feingold years ago, and we learned a lot about the effects that the additives have on our children. It was quite an eye opener. The Feingold program is the elimination of artificial colors, flavors, and certain preservatives, in an effort to improve children's behavior. Many families have seen dramatic improvement in children diagnosed with ADD / ADHD, etc., merely by improving diet. The program is really geared at children with behavioral problems, but many of us have discovered the effect that the additives have on TS-related tics as well.

They are a wealth of information, and have a very active and supportive membership forum. For a small fee, you can become a member, which gives you access to the annual food guide, regular newsletters, the forum, etc. They are a non-profit organization, so they have to charge a fee in order to pay for their costs. The fee was about $75 the first year, and $45 each year thereafter. It was well worth it. We were members for about 7 or 8 years, but no longer are members. The annual food guide provides a list of thousands of products that have been researched by the Feingold volunteers and deemed "safe" for the program. It was our bible for many years!!

But if you don't want to join, you can at least look at the info on their website. Besides that, if you have a Whole Foods store near you, you should be pretty safe with anything you buy there.

You mentioned behavior and irritability. We found that one of my daughters reacts that way when she's had too much corn syrup. That stuff can be downright evil to some children.

Let me know if you visit the Feingold website.

Jeff

[Caryn]

Thanks Jeff.

I will check it out today. I have heard the name being dropped here and there but did not realize there was an organization with as many resources. I will definitely visit for more info. One last question--- we have two other kids, what is the likelihood that they too have similar food intolerances? (One is 1 yr old, other 2 1/2?) We have put them on the same elimination diet as our child with ts for the most part, as I am cooking meals for the family and buying the color-free, preservative free foods at the grocer that suite our son with the allergies. At their ages it is hard to give something to one and not the other, also-- we have to keep ds4's reactive foods out of the house as he does not know what ingredients are in what and is certainly old enough to help himself when he is hungry.

Caryn

[Jeff]

Hi Caryn, I can't really speak to the probability of your other children having the same symptoms. Both of my children do; however, my nephew does, but his brother does not....

For my daughters, the tics started to appear at around age 6-8...

Jeff