Sharing my experience..

[vinayagar]

Hi All,

 

I thought that I would share my experience on this forum since like most of us here, I have gone through all the anxiety of seeing my kid with TS. I use to visit this site pretty regularly quite some time ago searching for answers. I must admit that I used to try all sorts of vitamins for my son after reading some of the postings. I would try a bunch of them after convincing myself and then start switching to another if things does not work out. I had my fair share of running to doctors and asking for quick remedies. I have not subjected my kid to any anti-psychotic pills but have been recommended a slew of vitamins and supplements. My son's tics used to be quite bad at times. Started at 3.5 years old. Had motor and vocal ones. The worst ones were his stomach muscles moving in a wave like fashion and leg spasms. Vocal ones were mild I think. Sounds were more like clearing of throat and would last for e.g. 4 weeks.

 

Anyway, to cut the story short, I must say that my son have been doing well for quite a while now without any supplement. At least about 2 years now with very slight and mild outbreaks especially when we do not follow the rules correctly. Thanks to one of the web site that I visited and this helped me alot. Here’s the link .. http://www.touretteswithoutdrugs.com

 

I even emailed to this person to ask him for some advice. I think he has been “God sent” for me. I just thought that I should share my experience. I just hope and pray that the method that this person has shared works for my son throughout

 

I have not gone to this site recently but I follow the simple rules that is prescribed..

 

1. Avoid wheat

2. Avoid milk

3. Avoid any sugar but take fruits with proper backing of carbo (read the site to know what I mean)

 

A typical day’s food for my son is as follows: My son is 6+ old now..

 

7AM - A bottle (about 80ml) of soy based formula milk (from Abbott).

 

9.30AM - Breakfast. A combination of 3 to 4 items from the carb,

protein, veg group of food. E.g. (potatoes, tuna in brine/olive oil,

tomatoes, mushroom for one breakfast). The items that I use in the

combinations are (tuna in brine/oil, eggs, scallops, potatoes, brown rice vermicelli, fresh mushrooms, tomatoes, carrots). All preparations are based on boiling or steaming the items.

 

12.30PM - Lunch. Brown rice with 2 dishes. One is normally a leafy

green vegetable dish and the second is either Chicken or Fish. The

preparation is Chinese style where the food is stir fried with some

gravy.

 

1.30PM - Fruits (e.g. banana, apple, orange, papayas, etc) about 10-30 mins after his lunch. (I used to make the mistake of giving him the fruit as late as 4PM. I have even given him a bit too much fresh water melon juice and that was also a problem). In short, not too much fruit that causes the sugar levels to shoot up.

 

3.00PM - Soy based formula milk (about 70ml)

 

7.00PM - dinner. Brown rice with 2 dishes. Similar to Lunch, one is

normally a leafy green vegetable dish and the second is either

chicken or fish. The preparation is Chinese style, stir fried with some gravy.

 

8.00PM - Fruits about 10-30 mins after his dinner.

 

10PM - Soy based formula milk (about 120ml)

 

Try to use as much fresh food as possible. I totally avoid giving him any deep fried stuff. No cane sugar is added into our cooking. However, due to the cooking style, we do use a wheat free soy sauce. I also avoid giving him wheat (no bread), dairy and artificial flavoring/colours. I do not let him take fruits at odd hours. It is difficult in between meals when he gets hungry so his regular lunch and dinner are normally full meals to keep him going. I do sometimes give him some potato chips or fried papadams in between meals. I also try to avoid refined flour even if its rice based since I think this might elevate the sugar levels faster.

 

The only times I break the rules is during his birthday where he gets to eat his cake and things like fast food & pizza. After that I revert back to this food regime and it has been okay so far..

 

I am not saying this will certainly work for everyone……but I think it is worth the try. Try to follow the rules.. and I think regulating the blood sugar level as mentioned in the site has some part to play in taming the tics.

 

cheers and good luck.

[ilovedogs]

Glad to see this worked for you! I know my son would NEVER be able to do that diet, actually I don't think I'd be able to do that diet. No wheat, no milk, no sugar? Wow! I'm amazed that you guys are implementing it. I hope this information helps others on the board!

 

Bonnie

 

PS: I guess we'd be able to do the diet if our lives depended on it like: You're going to die if you don't do this diet, but I know we'd have a hard time with this in our house. We're milk and sugar junkies here!

[vinayagar]

Glad to see this worked for you! I know my son would NEVER be able to do that diet, actually I don't think I'd be able to do that diet. No wheat, no milk, no sugar? Wow! I'm amazed that you guys are implementing it. I hope this information helps others on the board!

 

Bonnie

 

PS: I guess we'd be able to do the diet if our lives depended on it like: You're going to die if you don't do this diet, but I know we'd have a hard time with this in our house. We're milk and sugar junkies here!

 

 

Yes, I know it looks daunting. Actually, mine is an asian family. So rice instead of bread is our staple food. The main meals (lunch & dinner) are what my family eats as well. So it is the rest of the time that we need to be a little different for my son. And yes, telling him not to eat all the sweets and bread is hard. But thanks to my son's obedience, he just accepts the way we feed him.

 

I feel its better this way as I do not have to give him any medicine/vitamins at all. I used to give him high doses of B complexes, Cal/Mag, etc.. high enough till his urine was dark yellow.

[krisT]

I noticed on his website that he said milk is ok daily? I've always read to stay away from milk, and even you say you have eliminated milk?

[vinayagar]

I noticed on his website that he said milk is ok daily? I've always read to stay away from milk, and even you say you have eliminated milk?

 

Yes, you are right. The web site says milk is okay. But I always felt that milk would be an issue after reading some books and getting advice from a doctor. So I have always kept him away from that. Besides, the soy based formula milk that I give has the same nutrients as normal milk... so i play it safe and keep him away from dairy.

 

Where milk is needed for food preparation for example, avocado blended with milk, I just use his formula milk to substitute. In some of our indian dishes, we use fresh coconut milk and that is fine.

[Chemar]

some people with TS are fine with milk/dairy

 

my son is one of those

[krisT]

Vinayagar-did this man say if he was tic free now?

 

The blood sugar dropping and raising does make sense.

 

I hope she can have dairy; she loves cheese.

[vinayagar]

Vinayagar-did this man say if he was tic free now?

 

The blood sugar dropping and raising does make sense.

 

I hope she can have dairy; she loves cheese.

 

I didn't check the web site thoroughly recently. If I am not wrong, he mentioned that it's a method of keeping the tics under control... and he probably also said this in his email to me. Its probably not totally wiped out but I guess it is suppressed well. My experience with my son shows that this method does not eliminate the tics entirely but keeps it at a level that it's almost not noticeable. I have seen the tics comeback by just trying a few days of bread...or giving excessive freshly squeezed fruit juices like watermelon.

 

I think you could check if your kid can tolerate milk like chemar's.