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

[rfolckemer]

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????

 

 

Hello, I'm new to this site... My son has been diagnosed with TS since he was 6 yrs. old. He is now 8yrs. In Fort Benning, GA he received pediatric neurological care (civilian doctor). My sons symptoms were all sorts of tics, facial, jerking and twitching of hands and fingers, legs, and also verbal. At first he was diagnosed with a mild case of TS and OCD. My husband and I excepted his tics as just apart of him, however he was unable to function normally in a structured environment- school. We made the choice of starting medication to lessen his tics so he could be able to get an education. Unfortunately, those meds only worked for a couple of weeks at a time, or not at all. Along with all of that, we had allergy tests done on our own because the neurologist did not believe allergies had any connection to TS. We discovered he was allergic to eggs, and fish. Taking those out of his diet made no difference. Our son has behavior developed severe behavioral problems and is becoming socially unacceptable. Over the last two years he has been on medications that have never worked for him, and honestly he has became aggressive, irratable, emotionally distressed, and almost psychotic at times. I feel we are losing our son, and the medication is a big part of it. We have just recently moved to Fort Drum, NY- our first visit with the new neurologist I explained all of this to him. Once again, another doctor telling me diet had nothing to do with TS. I asked about weening him off medication to see where he is two yrs later without medications, and he denied my oppinions. He took him off one of the meds and added another. It seemed to help him, but only for a couple of weeks, and again right back to the same problems. I took it upon myself to take dairy out of his diet, and added soy. With that I had seen another dramatic change for the better, and now back to the same black hole. The end of this month he has his 2nd appt with this new doctor, and I am going to demand that they do tests now with all the meds he is on. Then ween him off and test him without, and see where he actually is neurologically at 8yrs old. This last week, he has been throwing tantrums like an infant. It was really scary, and 4 out of 5 days in school he spent with either the nurse or the principle who called me to come get him. What are we suppose to do once he is no longer able to function. I don't want to lose my beautiful little boy, nor want to see him suffer. I really truly believe that medications should seriously be monitored in our children. My son has never received any other tests since he was 6yrs old. He sure has taken alot of med's though.

[itsme]

Hi Rfolckemer,

 

It sounds like you're really going through it with your son. The best advice I can give you is to read as much as you can through prvious posts on this forum. It is what i did nearly a year ago, and i found a tremendous amount of help. During and after your reading ask questions about the things that you don't understand. People here are very helpful and compassionate.

 

We went the natural approach from the beginning with our 5 year old. We give him Bontech supplements which help tremendously!! We also eat a very strict diet that has No artificial anything in it. Nearly everything is made from scratch. It is time consuming but the results are well worth it.

 

It also might pay you to go to an "alternative Dr." We go to an environmental Dr. He ran all of the necessary tests before he developed a program for my son.

 

I hope this helps - I'm sure this forum will be a great help in your quest to find help for your son.

[michele]

RFOLCKEMER,

So sorry for what you have been going through. It has to be very difficult on your family. I pray you can find the right Dr. who will take an interest in your sons progress. As for the diet or allergies,I think you are very smart to take out the milk. Also try the wheat because it can make a difference even if it doesn' show up on an allergy test. If you go to an enviromental Dr. the first thing they will do is suggest the diet. It can make a big difference on behaviors.

 

We have been to a lot of Dr.'s and had alot of tests run. The tests are not as important as making sure someone can interpret them correctly. A biomedical or environmental Dr. would run all these tests. Do his tics wax and wane or stay constant? Have you noticed any triggers? These kinds of Dr's will take alot of time to get to the source of the problems. One catch they are pricey and often not covered by insurance. One plus they rarely give meds. but supplements that are natural. My friend swears by her holistic Dr. That is another option for you. Alot of meds can make tics worse and cause worse side effects then the tics. Keep searching here. The people here have the experience and knowledge to help you alot. In the mean time start asking around in your town for alernative Dr.'s. Even DAN Dr's see spectrum disorders and are also MD's. Best wishes and we are here for you.

 

Michele

 

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????

 

 

Hello, I'm new to this site... My son has been diagnosed with TS since he was 6 yrs. old. He is now 8yrs. In Fort Benning, GA he received pediatric neurological care (civilian doctor). My sons symptoms were all sorts of tics, facial, jerking and twitching of hands and fingers, legs, and also verbal. At first he was diagnosed with a mild case of TS and OCD. My husband and I excepted his tics as just apart of him, however he was unable to function normally in a structured environment- school. We made the choice of starting medication to lessen his tics so he could be able to get an education. Unfortunately, those meds only worked for a couple of weeks at a time, or not at all. Along with all of that, we had allergy tests done on our own because the neurologist did not believe allergies had any connection to TS. We discovered he was allergic to eggs, and fish. Taking those out of his diet made no difference. Our son has behavior developed severe behavioral problems and is becoming socially unacceptable. Over the last two years he has been on medications that have never worked for him, and honestly he has became aggressive, irratable, emotionally distressed, and almost psychotic at times. I feel we are losing our son, and the medication is a big part of it. We have just recently moved to Fort Drum, NY- our first visit with the new neurologist I explained all of this to him. Once again, another doctor telling me diet had nothing to do with TS. I asked about weening him off medication to see where he is two yrs later without medications, and he denied my oppinions. He took him off one of the meds and added another. It seemed to help him, but only for a couple of weeks, and again right back to the same problems. I took it upon myself to take dairy out of his diet, and added soy. With that I had seen another dramatic change for the better, and now back to the same black hole. The end of this month he has his 2nd appt with this new doctor, and I am going to demand that they do tests now with all the meds he is on. Then ween him off and test him without, and see where he actually is neurologically at 8yrs old. This last week, he has been throwing tantrums like an infant. It was really scary, and 4 out of 5 days in school he spent with either the nurse or the principle who called me to come get him. What are we suppose to do once he is no longer able to function. I don't want to lose my beautiful little boy, nor want to see him suffer. I really truly believe that medications should seriously be monitored in our children. My son has never received any other tests since he was 6yrs old. He sure has taken alot of med's though.