My son was diagnosed yesterday w/ Tourette and I need to ramble a little bit.

[moopdog]

We've suspected for a while, but getting the actual diagnosis from the doctor was a little surreal. I have many questions for anyone who has a child with Tourette Syndrome or anyone who can give me some good online resources (since we live in a rural area).

I mostly have some questions about the lifestyle changes the doc said are crucial, including diet and exercise. He said Ryan can have no food coloring, MSG, Nitrates, Caffeine or artificial sweeteners. Huh? He already gets no caff or sweetener, but how the heck can we keep him from having food coloring - everything has food coloring! Same with MSG & Nitrates - there goes all of my meal planning for a week. Because I work, we only have a real homemade meal once or twice a week, the rest is pre-packaged or quick fixes that are loaded with that stuff (not proud about it at all, just the way it is).

Now I was quite confused and hoping someone can clarify - He said that a good nights sleep is imperative - luckily he already gets a good 10 hours each night... but then went on and on to say that we need to keep him busy around the clock, and even said he needs to become "exhausted" by the end of the day. He said certain sports are better than others (baseball not so much, football, swimming and soccer are excellent). He said that Ryan should never be sitting in front of the TV or sitting around bored. He mentioned digging in sand or dirt and doing carpentry for some reason were both really good things for TS. And also that the majority of his free time should be outdoors. Good thing because we live in the country and this should be fairly easy.

All of these things affect the amount of dopamine and adrenaline in his body, and those lifestyle changes can dramatically reduce his tics. But he ALSO said that his tics will come and go througout the year (very true) and will get worse with holidays, anticipation of a new season, end of school year, beginning of school year, testing periods, etc. So... if he's excited and happy about playing football, how can it reduce his tics at the same time? If he is supposed to be getting as much sleep as he needs, why does he want him going going going? He also mentioned that he needs to do relaxation techniques several times a day in order to ward off tics caused by inner stresses. It all seems to be slightly counteractive.

I want to FULLY undestand all of this before I talk to our in-laws and extended family this weekend. I know they will have these same questions for me so I need to really get it! Please help...my mind is a little boggled right now.

Oh, one more thing... since Ryan's Tics come and go, and are almost non-existent right now, do we make these diet changes now and always do them, or save it for when his tics arise?

TIA

 

[JOLAROCHE]

My son is 15 and was diagnosed in 2nd grade. I was not told most of the things that you where told. We saw a neurologist for a few years for meds but as time went on his Tourettes became the least of my worries. Sometimes OCD goes hand in hand with Tourettes. My son developed OCD in about 3rd or 4th grade. He met with a psycologist and had behavorial modification therapy which worked really well for him. If you would like to PM me I would being willing to talk back and forth with you. Chris tics to wax and wane. A good part of the time he is tic free. You might need to help school understand what is good for him and what is not. For example if he is standing reading to the class with a piece of paper in his hands he might head tic. So for Chris we never tied up his hands while standing in front of the class. He woud not go on field trips or play sports because he had a fear that he would be forgotten there so we had a cell phone added to his IEP and he has been going on field trips since. If he started to tic in class or the teacher realized she had lost him she might place a light touch of her hand on his shoulder it brought him back but not cause attention to him. If he tics around us I might say relax buddy and this make his realize he is ticking and he may stop.
When we first told family about Chris one of his relative asked if he would swear and I told them that If one more person asked that question he would not but I would. That did stop all the stupid questions. Many people only know about the worst of Tourretes because that is what is sensationalized ont TV and movies. It might not be as bad as you think. If you do not want to use the word Tourettes you might say he has a multi complex tic disorder.

Hope some of this helps. I would also get a 2nd oppion as I have never heard about the food coloring for Tourettes and I know three children with it with all different Drs. I did not stop my son from eating or doing the things he likes. He likes to play video game and while he is playing he does not tick because he is concentrating on the game.

 

[moopdog]

Thank you for replying, it really does help to hear from someone on this. I will think about your comments about the food thing, because I really don't know WHERE to begin with eliminating these things from his diet. We went grocery shopping today and I just stood there not knowing what to get.

I have to admit his tics ARE way worse during his video game playing, it is too intense for him or something. The doc was right on that one, at least as far as my son is concerned. Up until now he has only been allowed to play it for one hour on Friday, Sat and Sunday. Now we're thinking of chaning the rule to 30 minutes instead or something like that.

I will also look into a 2nd opinion although this appt was made on April 7th and yesterday (July 20th) was the soonest possible appt. That's because there are hardly any doctors in this specialty around us. So... our hands are slightly tied. I may PM you, but not until this weekend, when I have more time at the computer. Thanks again!!

 

[mechurchlady]

Anything rapid, especially games, can cause epileptics to have a seizure. I think that the games may be affecting his brain in the same way, overloading it.

http://www.sweetpoison.com/food-additives-to-avoid.html
That discribes the list you have of foods not give your son. I have allergies so read lots of labels. Anything in its natural state like meat and taters is fine. Organic often is safe but not always. There are a ton of things he can eat that are packaged and safe to eat. If you want a list I could find it but it is the end of my day. Big hugs and trust me that there are many people out there who want and buy food with no preservatives or additives.

 

[moopdog]

YES PLEASE send me that list. I feel so dumb but really I don't know what to check on labels or anything right now. If someone says "buy this and this and avoid this brand cracker" that will help out tremendously. I know we're all busy, so when you get time - you get time. Don't worry if it takes a couple of days. Thanks so much!

 

[ireland_nicole]

I'm sorry that I don't have anything constructive to add except my support, so
Nicole

 

[mechurchlady]

I will not guarantee any product I post here as food additives do not affect me unless they are based on my allergens. I will tell you what the company says though. You will have to read labels and go through the sites below to find companies then from there products you like. Vegans also tend to avoid additives. You can call the big companies like Kraft and ask for a list of no additive foods.

http://www.annies.com/
kid's club, free magnets and sticker.
I love this site as they are no additives and often gluten free.
http://www.annies.com/breakfastcereal is some yummy cereals for example all natural and additive free.

http://www.briannassaladdressing.com
I read the label yesterday and they seem to be no additives.

http://www.farrellbread.com/
organic bread

http://www.diamondorganics.com/prod_detail_list/221

http://www.acadianmaple.com

http://www.cascadianfarm.com/home.aspx
A well known and excellent source for cereal and bars.

http://www.muirglen.com
soups, pasta sauce, ketchup, canned tomatos

http://www.organicvalley.coop/

http://www.kashi.com/
cereals

http://www.frenchsmustard.com/know-the-ingredients.html
http://www.frenchs.com/recipe/frenchs/product_m_faq.jsp
Additive free mustard.

http://www.stonyfield.com/
yoghurt

www.horizonorganic.com
Most milk is additive free though.

http://www.organiclivingfood.com

http://www.traderjoes.com/products.html

http://www.nutritiondata.com/
gives nutrition of foods not ingredients but good for knowing how sweet, salty etc a food is.

http://www.extendbar.com/

http://www.baskinrobbins.com/

breakfast time, sorry got to run