Helping Children With Tourette Syndrome

[Guest Guest_apriella2002]

hello i am a mother of two sons one had tourette syndrome and ocd. weve been down that road where oh no he has tourette syndrome to finally a diagnosis now what.well to be honest with you the doctors dont know that much about tourette syndrome.as a matter of fact they dont do anything for any kind of brain disorders but cover them up with medication.so if anyone out there is expecting them to take out a magic pill and cure our children we are sadly mistaken. who says we cant let them be who they are.if you really love your children you will say no to drugs and yes to what makes them happy.i have found out that a good strong motor skill program where the children are made to do specific excercises strengthens thier minds and helps them learn to control thier bodies...maybe the way to healing is through mental stability? i would love to hear some replies...thanks apriella

[Chemar]

Hello and welcome......

You will find that the majority of people who post here are those who favor natural or alternative treatments for Tourette Syndrome,rather than medication.

 

Most of us have had great success with the use of supplements and special diets that eliminate known tic triggers like artificial colors, flavors etc.

It is now fully recognised that certain vitamins, minerals and amino acids are deficient in many neurological disorders, and thanks to the research of people like Bonnie Grimaldi ( http://www.BonnieGr.com ) the areas where boosting is needed are known.

 

My son, who also has ADD,CAPD,OCD and SID along with the TS has benefitted tremendously from a variety of treatments including Occupational Therapy involving Motor excercise, Biofeedback, Accupuncture, Diet & Supplementation and also Environmental optimization to avoid allergens and other known tic triggers.

 

I am not too sure as to what you mean by the term "mental stability" as I certainly would DISAGREE that people with TS are necessarily mentally unstable, .......it is a neurological disorder with a genetic basis and yes, there are things that can help to damp it's symptoms and keep it in the milder, waning phase, but I would caution against the suggestion that any currently known treatment can "cure"it..either physiological or psychological. Yes, there are psychological issues that can be comorbid with TS, but in many cases TS manifests as simple, mild tics alone, with absolutely no need for medical or psychological intervention.

 

I certainly would agree with your point of view that many doctors have very little knowledge about TS, and tend to dispense potentially harmful medications that will cover the symptoms.

Thankfully there are a steadily growing number of physicians who seek to educate themselves on the underlying factors in TS and other neurological disorders, and who recognise the value of alternative treatments, and the dangers of the conventional prescription drugs.

 

My son has always found excercise to be a great tic/OCD damper, so i can see the benefit of the motor excercise you describe, as long as it isnt an attempt to force tic suppression, which is not a good idea........there is much evidence that shows that enforced tic control can lead to an elevation in OCD, rage, depression etc.

 

I would be interested to hear a bit more about the motor program that you mentioned, and am certainly pleased that you are seeing success for your family thru it.

[Guest Guest]

Very well said Cheamr. Thanks

I too believe what has helped my child the most to get his tics under control has been a good supplement program and an educated family and teacher. However I disagree with your comment regarding, "Saying no to drugs and saying yes to what makes our kids happy ".

Saying yes to Clonodine has made my child happy. Because of his low dose of medicine each night he is "happily focused", "happily socially approprate", and "happily successful at school work".

Since I started this ride on the TS rollercoaster I have learned that what works for one may not for another. I hope that what works for you continues to do so and adds happiness to you and your childs life.

Best Wishes

Betty

[Chemar]

Ummmmm.....just to clarify......the statement "Saying no to drugs and saying yes to what makes our kids happy ".....was NOT made by me, but is part of the original post made by apriella who started this thread.......

 

I most certainly do not advocate a philosophy that suggests that people never benefit from the conventional prescription drugs as I know many people who have found benefit, and who have suffered mild to no side effects....

 

My position is that these powerful brain drugs should rather be a "last resort" and that they should be carefully researched in terms of potential side effects before being given (especially) to children.

 

My feelings are very much based on the personal experience that my son had where the side effects from the drugs did horrible things to him!! I also have a lot of experience with other adults and children who have suffered severely from the effects of these strong drugs, especially the neuroleptics and SSRIs

[Guest Guest_apriella2002]

hello again,i didnt intend to make anyone angry on the statements but my son was on clonodine for 2 years when he developed horrible hives that covered his body he had to have shots 2 to 3 times a day to help him breathe..i just dont think the doctors know how to treat tourette syndrome that well and if you have a child that has tourette syndrome and the tics really bother them and they want to be medicated thats great but my son was so tired all the time he couldnt even be a kid anymore. now that he is drug free he feels alot better and will admit that medication wasnt right for him.now hes learning to function in society by just being himself and a mother couldnt ask for better for thier kid. and if the school doesnt like his tics or anyone else thats just too bad..apriella

[Chemar]

Hi Apriella

 

dont worry ........ you certainly didnt make anyone angry

 

people are often very sensitive about TS, it's diagnosis and it's treatment so that often colors reactions.

 

Your input is very valuable as we are all always on a learning curve, and sharing our experiences with one another helps us all.

[Guest CARLEY]

I would just add that absolutely the doctors don't know how to treat TS. They go for the drugs before even checking for anything else. I am learning so much from this site. Those hives Apriella talked about sound terrible. And that drugs not supposed to be as bad as some of them! Sometimes I wonder what these doctors would do if their child had tourettes. We tried antidepressants for the OCD part and prozac seemed to help for a while, then they switched to zoloft and he had a bad reaction, said his brain seemed to be "moving." And if he didn't take it for a day or two there was a reaction also, sounded almost like seizures to me. I don't htink kids were meant to be taking these drugs.

[Guest Guest]

This is the wonderful place for support, sharing and learning. I hope no one mistakes a response for anger!! Frustration perhaps at the situation we have been given, but never anger toward another who understands the most.

 

The hives must have been an awful thing. My son gets tired from the Clonodine but he does not get much during the day. The other side effect is nightmares. Did you see that with your child?

 

I am caught between the guilt of saying ok so quickly to my nuero when she put my son on Clonodine the first time she met him and, between the fact that it does help him. I have to admit I am even nervous of possible long term effects of Bonnie's Supplement program. It seems like so much to give such a little body but then again IT WORKS. I often wonder if I am harming him in the long run to make life better today??? Uh a mother's job never ends.

[Chemar]

I think you can feel pretty safe using Bonnie's and other pure supps at the correct dose levels.

These are natural building blocks of our bodies and the research clearly shows that they are deficient in people with TS

 

the drugs on the other hand are.....IMHO.......like swallowing poison!

I still feel tremendous guilt at what i allowed doctors to prescribe for my son without first checking on them.....thankfully most, but not all, of the detrimental side effects he suffered are now gone...two years drug free.....and doing great..........