massive tics

[airbucket]

just wanted to get some feedback.....this afternoon when i picked my son up i saw he was having this terrible tic....ive seen once when he had a bad flu and the other day he did it a few times....its where he takes his whole body from head to feet and like shakes it, hard ot describe. Its like a whole body shudder, anyone seen this in their child? now that he is laying down watching a movie, he will suddenly kick his legs out and tense them, then do it again. it looks so STRANGE, it looks like he is being jolted with electricity. it is also accompanied by the loudest huh sound.

 

the only new thing going on is probiotics we started about a week ago, but thats supposed to be good right? he had a crappy school lunch though. He is also having a tic where he has to get on his hands and knees and touch the ground when he gets out of the car. These are some wierd tics, just wanted ot share!

[CarolynN]

I am sorry to hear your son is going through this. I know how scary it can be especially when new tics surface.

 

I am very curious as to what he ate for lunch. With my son when he has a major reaction to MSG I see it within about 45 minutes to 1 hour after he consumed it. I then find his tics are usually worse the second and even third day. By the fourth day, as long as I have kept his diet clean from MSG and other artificial items, his body has started settling back down but still is experiencing a smaller level of tics. Usually by the 7 day his tics have stopped. With all this said I am also giving him supplements to to help his body.

 

I will also say that my son cannot eat at least 50% of school lunches because of MSG. It is sad I asked the person in charge of the lunches if there was any MSG in their foods at school. Of course her reaction was no. Being that MSG is under so many names, and I know what to look for, I told her I would need to read all the labels of the food items each day to discern if he could eat them. Of course, as I stated, the school lunches are full of MSG because they are using processed/frozen foods that they are just heating up.

 

Let me list some of the examples of the school lunches Daniel has at school that contain MSG, but are not labeled clearly as MSG products. Chicken Patty Sandwiches, Chicken Nuggets, Chicken and Gravy, Chicken Fajita, Taco Salad with Seasoned Ground Meat, Grande Nachos, and all of their soups.

 

My thought is if he happened to have MSG lets say three or four days ago, and then perhaps two days ago, and then today you could be seeing a build up of an MSG/Artificial food reaction that just spilled out today. Just a thought?

 

Carolyn N.

[airbucket]

thanks carolyn,

 

the first thing i thought of was the foods....but i have a question about that. Is it possible for a child to sometimes react badly to a food like MSG and other times NOT react at all? or would the child always react the same if the food was an irritant to them? because i swear there are days my son eats crap has a great tic free day, and then others not.

 

also, do you think ALL kids with TS could have these intolerances that affect the tics etc? if the TS is genetic or organic, could the child maybe NOT be sensitive to those ingredients? this is a confusion because my son will have good days having eaten sugar or artifical color, and also has terrible days having eaten those, so i dont know if its the foods or not. are there kids who could just have no sensitivities to those things like if i eat artificial colors i dont have any reactions.

 

thanks much for your input! he has not ticced for the past hour or so and his mood is better.....i also gave him his first dose of inositol today, but didnt even know how much to give so i dont think thats a factor, too soon.

 

thanks again!

 

p.s., forgot to say he ate nachos and meat and peaches in syrup for lunch. yesterday he also had school lunch with the ^&%$$ nasty syrup fruit, but there were no tics really yesterday

 

I am sorry to hear your son is going through this. I know how scary it can be especially when new tics surface.

 

I am very curious as to what he ate for lunch. With my son when he has a major reaction to MSG I see it within about 45 minutes to 1 hour after he consumed it. I then find his tics are usually worse the second and even third day. By the fourth day, as long as I have kept his diet clean from MSG and other artificial items, his body has started settling back down but still is experiencing a smaller level of tics. Usually by the 7 day his tics have stopped. With all this said I am also giving him supplements to to help his body.

 

I will also say that my son cannot eat at least 50% of school lunches because of MSG. It is sad I asked the person in charge of the lunches if there was any MSG in their foods at school. Of course her reaction was no. Being that MSG is under so many names, and I know what to look for, I told her I would need to read all the labels of the food items each day to discern if he could eat them. Of course, as I stated, the school lunches are full of MSG because they are using processed/frozen foods that they are just heating up.

 

Let me list some of the examples of the school lunches Daniel has at school that contain MSG, but are not labeled clearly as MSG products. Chicken Patty Sandwiches, Chicken Nuggets, Chicken and Gravy, Chicken Fajita, Taco Salad with Seasoned Ground Meat, Grande Nachos, and all of their soups.

 

My thought is if he happened to have MSG lets say three or four days ago, and then perhaps two days ago, and then today you could be seeing a build up of an MSG/Artificial food reaction that just spilled out today. Just a thought?

 

Carolyn N.

[bmom]

You would think that Dr. Robbins may be a good resource for you to call as you just spent a bunch on money on tests there. Did you give him a call? Did he do an intolerance test on your son? I have to say that I was giving my son probiotics for awhile and was wondering if he was reacting to them although I think probably not, I stopped to be safe-slightly paranoid these days about new things.

[Chemar]

we noticed cumulative reactivities for my son and came to realize that the effects of "junk" food may not always show immediately, but would inevitably cause a pay back

 

I think, as my son has genetic TS, that his reactivities were heightened when that internal trigger for waxing was "on"...simplistic way of explaining it I know but the only way I have come to understand it

[CarolynN]

Airbucket,

 

Were the nachos he ate from a nacho type sauce or would they have been made from say cheddar cheese sprinkled. If it is from a "sauce" type of product, like the kind you can buy at the supermarket on the potatoe chip and tortilla aisle I can almost guarantee you it has not only a high level of MSG but allow Yellow Dye #5. Any "seasoned" meat like the kind typically served with Nachos, say at a restaurant, is seasoned with flavor packets that again contain very high levels of MSG. There is absolutely no way my son Daniel could handle eating those combinations without a reaction.

 

If the nachos were made with actual cheddar cheese and no additives the cheese probably had Yellow Dye 5. Alot of cheeses now use annato for coloring which does not cause tics.

 

Also tortilla chips almost are always made with corn oil. I have found some that do not. Corn oil also acts similiar to MSG because of its molecular structure.

 

So with all this being said he could have had a VERY high MSG lunch along with Yellow Dye 5. Yellow Dye 5 gives my son Daniel tics too. It is his second worse enemy next to MSG.

 

In regard to your question as to why he would react one day and not the next it could simply be he can handle a moderate amount of MSG/Artificial but once he has been pushed past the point of where his body can process it it just reacts. This is exactly what I have seen in my son.

 

You probably should go to the school and ask to read the labels of the foods they fed him.

 

What really helped me figure out the whole puzzle was keeping food logs. I had read a post by Chemar as to MSG being her son's biggest trigger and it was from that post that the whole puzzle came together. I have to say I really believe God used Chemar to answer my prayers (thank you Chemar for your dedication. My son's life is different because of your commitment!)

 

Carolyn N.

[airbucket]

hi Bmom:

 

no i didnt think to call Dr Robbins.....he only saw my son once, i feel shy to call in the sense that what am i going to say??

 

my sons gut problems are so bad that i dont feel inclined ot stop the probits right now....i would hope they wouldnt cause tics!

 

what is this intolerance test? Do you mean the food allergies test? Because if so, he sent us home with a test kit to do and mail in....but i dont knwo what an intolerance test is? Is that a way to know if things like MSG, colorings and the like are adversely affecting?

 

thank you for your post, maybe i should call Dr Robbins!

 

You would think that Dr. Robbins may be a good resource for you to call as you just spent a bunch on money on tests there. Did you give him a call? Did he do an intolerance test on your son? I have to say that I was giving my son probiotics for awhile and was wondering if he was reacting to them although I think probably not, I stopped to be safe-slightly paranoid these days about new things.

[bmom]

hi Bmom:

 

no i didnt think to call Dr Robbins.....he only saw my son once, i feel shy to call in the sense that what am i going to say??

 

my sons gut problems are so bad that i dont feel inclined ot stop the probits right now....i would hope they wouldnt cause tics!

 

what is this intolerance test? Do you mean the food allergies test? Because if so, he sent us home with a test kit to do and mail in....but i dont knwo what an intolerance test is? Is that a way to know if things like MSG, colorings and the like are adversely affecting?

 

thank you for your post, maybe i should call Dr Robbins!

 

You would think that Dr. Robbins may be a good resource for you to call as you just spent a bunch on money on tests there. Did you give him a call? Did he do an intolerance test on your son? I have to say that I was giving my son probiotics for awhile and was wondering if he was reacting to them although I think probably not, I stopped to be safe-slightly paranoid these days about new things.

A food intolerance test shows different than an allergy test. My son has done the RAST and IGE which are allergy tests. The one that he has not done is the IGG which is an intolerance test. I am not sure if it shows MSG, colors, and the rest or just food. I know that probiotics are very good and I will probably start again down the road sometime.

[airbucket]

Carolyn,

 

thank you! you are so helpful! he did not eat nacho cheese, it was tortilla chips and seasoned meat, also that nasty gooey fruit. So i agree there is msg in that meat sauce, dont know about the nachos, the Tostitos we buy only have corn and oil.....did not lknow about corn oil tho being similar to MSG in the way it works....

 

i also noticed this eveing not only the tics, which continue, and his out of it behavior, but also a ruddy tone to his face, which is normally smooth...like slightly splotchy redness, not too splotchy but not like a blush or sunburn. interesting.

 

the thing that gets me is that i remember times when my sons tics have been awful and he has had no artificial ingredients....but as you say, a food log, excellent idea. I feel like i need an everything log! also, EXCELLENT point about the bad "stuff" building up, hence maybe not seeing a reaction every time he eats junk, but then seeing it sometimes, could be that buildup.

 

I am going to get the ingredients from school toimorrow. Next week i wont have to worry about that because we are starting the yeast free dairy free diet and i will be packing his lunch and basically making most everything he eats. I may have some interesting things to report after that.

 

And finally, I agree that Chemar's commitment is just mind blowing and if it werent for many of the things she has told me, I may not have found new paths to explore. All of you are just great! thank you so much!

 

Airbucket,

 

Were the nachos he ate from a nacho type sauce or would they have been made from say cheddar cheese sprinkled. If it is from a "sauce" type of product, like the kind you can buy at the supermarket on the potatoe chip and tortilla aisle I can almost guarantee you it has not only a high level of MSG but allow Yellow Dye #5. Any "seasoned" meat like the kind typically served with Nachos, say at a restaurant, is seasoned with flavor packets that again contain very high levels of MSG. There is absolutely no way my son Daniel could handle eating those combinations without a reaction.

 

If the nachos were made with actual cheddar cheese and no additives the cheese probably had Yellow Dye 5. Alot of cheeses now use annato for coloring which does not cause tics.

 

Also tortilla chips almost are always made with corn oil. I have found some that do not. Corn oil also acts similiar to MSG because of its molecular structure.

 

So with all this being said he could have had a VERY high MSG lunch along with Yellow Dye 5. Yellow Dye 5 gives my son Daniel tics too. It is his second worse enemy next to MSG.

 

In regard to your question as to why he would react one day and not the next it could simply be he can handle a moderate amount of MSG/Artificial but once he has been pushed past the point of where his body can process it it just reacts. This is exactly what I have seen in my son.

 

You probably should go to the school and ask to read the labels of the foods they fed him.

 

What really helped me figure out the whole puzzle was keeping food logs. I had read a post by Chemar as to MSG being her son's biggest trigger and it was from that post that the whole puzzle came together. I have to say I really believe God used Chemar to answer my prayers (thank you Chemar for your dedication. My son's life is different because of your commitment!)

 

Carolyn N.

[Chemar]

Airbucket

 

when you spoke of your child's rash a flag went up for me

 

Scarlet Fever results from a toxin produced by strep

http://www.kidshealth.org/parent/infection...rlet_fever.html

 

I know you were recently at Shands. Did they run any strep tests??

 

and yes, I would get in touch with dr Robbins asap

 

Cheri

 

ps thanks for the kind words. I try to keep up here, but must admit soooo much new info has come out in the 8 years since my son's dx that I feel many of you are way ahead in your knowledge, especially on dietary modifications and the details of the biochemistry behind all this. When my son began getting his life back, thanks to Bonnie publishing her protocol on her old yahoo page back then, and my then finding Latitudes/ACN, I felt that the least I could do was to try to point others in the direction where we had found improvement.

So it really is a blessing to me to know that it has been of help to anyone.