A challenge to Diet Changes - son w/no food allergies?

[help4matt]

Hi - I am new to the site in the past few months. 8 year old son with minor eye tic (had an arm twitch that is gone). We tried just about each diet - elimination, rotation, wheat free, gluten free, yeast free, casein free, feingold, etc. - but have not noticed any changes. Also, we had him tested and he was NOT allergic to anything, nor had any deficiences (like magnesium, etc.) Has this happened to anyone else? Why would you change the diet if no allergies (I get the sugar / additives, but why wheat/gluten if no allergies).

 

Also, we have seen 3 of the leading TS researchers here in Central NJ - most recently Dr. Bennett at Morristown (Childrens Hosp). He was recommended by the TSA and lectures here at Rutgers on the ADHD tie in, etc. He has been treating TS patients for years and have NOT see any improvement with diet, by nature they wax/wane..but will always be there? Has anyone found a Pedi Neuro in NJ that has seen a change diet changes help?

 

 

Thoughts????

[patty]

help4matt,

 

You mentioned your son was tested and was not allergic to anything. Have you tried the IGg blood test for food sensitivities? Perhaps he is not allergic but sensitive to certain food. Food sensitivity is a delayed reaction. Often it shows up hrs or days later.

 

Also, does your son have any environmental allergies? That can be a possible trigger.

 

Any TS or tics within the immediate & extended family? That can be an inherited condition.

 

Pat

[bmom]

Could someone tell me the company or test that does the most accurate IGG testing? My son is having this done on Thursday, yet I want it to be the most accurate. Thanks!

[faith]

hi help4matt,

Please forgive me, am I understanding that your son had a arm spasm tic and now what you describe as a minor eye tic? You mentioned the doctor had told you this had to be present about a year (along with other tics) for it to be classified as ts. If your son has only had this for a couple of months, especially if you feel it is mild, I'm thinking you shouldn't torture yourselves with different dietary restrictions especially if he doesn't really have any allergies. Now food intolerances and sensititvities (as Patty mentioned above) could be another thing, and if you want to persue that testing, you could, although eliminating categories of food groups as in gluten free/casein free is an alternative way to do it. But honestly, I think what I'm saying is that from your posts, you seem to be struggling on how to handle this, especially by eliminating things, and to me, if it didn't seem to make much of a difference when you implemented it, then I would not dwell too heavily on that part.

 

You asked about why we eliminate certain foods if they are not allergic, and it is not because they necessarily show a true allergy, but rather seem to have an intolerance or sensitivity which could be a delayed reaction. This does not necessarily mean that the food itself causes the tic, but rather somehow irritates the immune system in such a way that it causes the nervous system to react, and in our kids, that happens to be in the way of tics, as that is where their weakness is. Now this is totally my lay person way of explaining it, and believe me, I don't exactly get it either, but somehow it seems to work for some, not just for tics, but for other ailments as well, i.e. arthritis, stomach ulcers, etc. For instance, my son was shown intolerant to corn on an igg type testing, and at the time he had a head shaking type tic, and once we elimiated the corn (along with a few other things) that tic did resolve within the week. Cooincidence? Don't really know, but it did help in that instance. My son does wax on other tics here and there, so I am still investigating. There is a book you could look for at your library, I forget the exact name, but I think it is "Food allergies and intolerances" by Stephen Astor. It helps explain a little about this theory.

 

But again, if this does not seem to be helping your child, I would not go overboard eliminating things, perhaps he may need certain supplements to help his immune system along. And if your child has not been displaying multiple systems for more than a year, there is a very good chance this will resolve and not be a problem in the future.

 

Faith

[Chemar]

hi help4matt

 

my son has genetic Tourette Syndrome, and I can most certainly say that dietary changes have helped.

In his case, even tho there are no actual food allergies other than extreme sensitivity to artificial food additives. By cleaning up his diet of all those additives, and supplementing with specifically what he needed, he went from having severe and debilitating tics to now having very mild tics.

 

so yes, the doctor you quote is correct in saying that IF your child has actual TS then waxing and waning is often part of life..........however, where I would strongly disagree with him is the blanket statement that there is no improvement with dietary modification........it may not *cure* TS, and yes waxing and waning may well continue, but it sure made a dramatic difference in the frequency, intensity and duration of the waxing periods for my son, and, many here can attest, the same is true for other TS dx people too

 

when my son has compromised on his diet, or neglected his supps, his tics have become elevated. When he watches what he eats and takes his supps, things settle again. Yes he tics, and the tics wax and wane, but it is nothing at all like what it was before nutrition became the key factor in healthcare for him.

[Guest]

hi help4matt,

 

I'm also one of those that has genetic Tourette Syndrome. It's not a real strong conection to see in my family history, but I have a second cousin who has tics & his father had a throat clearing tic when stressed. I'm very allergic to foods, dust/molds, and pollens. Allergy treatments, supplements, Chinese cupping/massage, and acupuncture have all made a huge difference in my life with the tics. So even if your child has genetic TS, it doesn't mean that alternative treatments won't make a difference in his tics.

 

Carolyn

[lmcgill]

Our son showed no alergies on the prick test method either. But on the IgG he was off the charts on soy, eggs as well as some others. Our initial response from his Pediatric Neurologist was to be careful with diets and supplements, that they will not help. We are doing it anyway, he is doing better now and I am not going to stop trying anything as long as it is safe and may help.

[michele]

We showed no allergies on the blood tests done by a pediatric gastro Dr. We tested negative to all alergies done through blood work. However, we are still doing the GF/CF diet and trying to reduce artificial colors especially red 40 and low sugar. I was at the neurologist yesterday and he also does not support the diet. He feels there is a lack of research to support it and he said most don't see difference long term and if you listened to everything out there that was bad you wouldn't be able to eat anything. I however think my son's behaviors are better on the diet and he is less emotional and easier to get along with. I think it may be more of a sensitivity to wheat and milk then an actual allergy and overtime it builds up and taxes his immune system.

 

Michele

 

 

Our son showed no alergies on the prick test method either. But on the IgG he was off the charts on soy, eggs as well as some others. Our initial response from his Pediatric Neurologist was to be careful with diets and supplements, that they will not help. We are doing it anyway, he is doing better now and I am not going to stop trying anything as long as it is safe and may help.

[help4matt]

Pat

Thanks for the note. Can you help me understand what the IGG test is and who would perform such a test? Did you decide to do that on your own, or was it recommended?

[help4matt]

Michele,

Thanks for the reply. What exactly do you mean when you say "taxes his immune system"? Did you read something related to dietary build up and it affect on the IS? So the thought then is that this build up results in some sort of allergic reaction that affects the brain (a brain allergy)?

[help4matt]

Faith,

Thanks for the detailed message. All I can say is this is driving me carzy. I work for one of the largest Health Care companies in the world and they do not really focus on this area, which is surprising if the statisitics are true. But then again, not really if you consider it would revolve around gene therapy. The diet is fascinating to me, but I'm just not entirely sure that I get it yet. As I said, we tried just about everything. I won't say that we have not see any difference -but they are typically short lived. So, is the diet working and/or he becomes less stressed (which is a trigger for him)? Hard to isolate one thing. Also, we have always eaten organic in our family (so colors and additives were never present). We decided (since he is 8) to eliminate the things he ate the most of - whole wheat bagels, eggs and milk. Over 2 weeks we did not see a real change- with the exception of his attitude. He was becoming extremely vocal and aggitated about not being able to eat things - specifically when it did not change his tics. So, having said that -since a fair amount of this disorder centers around the social / psychological issues -are you ever concerned about adding more stress and making the child even more self conscious about the condition?

[lmcgill]

Pat

Thanks for the note. Can you help me understand what the IGG test is and who would perform such a test? Did you decide to do that on your own, or was it recommended?

IgG is the one that tests for delayed responses to foods. We decided to do it on our own. Mostly because our GP as well as the Optomotrist noticed black rings below his eyes and said he had allergies. $400 later we had the results that showed what was bothering him. The black rings went away, he stopped sweating to point of soaking his pillow every night and he slept and ate so much better.

[michele]

I've read so many books but I will take a guess I think Lisa Lewis talks about this in her book Special Diets For Special Kids also McCandless book about the Children with Starving Brains might make reference to this. Definately check out Lewis's though. PLus her diet examples are helpful. I found it amazingly true with my son. He has immune problems though. It may be in relation to TS or PANDAS. However his tics are definately worse when his immune system is compromised from illness.

Michele

 

Michele,

Thanks for the reply. What exactly do you mean when you say "taxes his immune system"? Did you read something related to dietary build up and it affect on the IS? So the thought then is that this build up results in some sort of allergic reaction that affects the brain (a brain allergy)?

[faith]

help4matt,

Yes, sometimes my son does not want to comply with all dietary restrictions, and I do have to lay off sometimes, but not too much. I envy the parents who see an almost immediate reaction with more tics to certain foods, however, my son I think reacts when there is too much and it sort of accumulates, and then I know we should back off certain things. Like right now with Halloween, I have to let him have a couple of his candies or chocolates. I limit it and make sure he doesn't eat too much, but it does get hard to keep this all up 100% indefinitely. He knows I don't approve of unhealthy artificial junk, and I only sometimes have to allude to these foods being bad for his "problems", we don't use the word "tics", he doesn't know what that is.

 

Faith

[patty]

Faith,

 

I, too don't use the work tic with my son. I thought it would cause too much stress on him. I don't want him to make the connection that the restricted diet, limited TV and no video games is related to his tics. Then he would see these restrictions as punishments.

 

Pat