Tourettes Medication... Please Help

[Guest Michael Armocida]

I have a 13-year old son with Tourettes, diagnosed when he was 5-years old. Shortly after the diagnosis I discovered that Tourettes medications still had the same life-altering side-effects as when my brother was diagnosed 35 years ago.

 

As a result I followed the advice published in Latitudes and found my son was allergic to Dairy, corn, oats, and fish. My wife and I removed these items from his diet and to our delight his tics disappeared. We treated him successfully in this manner for seven years. Dring this time my wife bragged to her family and friends how well the treatment worked and was an advocate for others with Tourettes to try this method.

 

Recently my wife and I divorced and are fighting for custody. My wife feels that her case is stronger by claiming that the diet never worked and having our son put on medication (as I have been very active in managing his Tourettes and she feels this would hurt her chances in court). During our last court appearence the Judge got my wife to admit that our son's Tourettes had improved significantly over the years and he dismissed her motion for medication, allowing me to try biofeedback first (since diet is no longer an opton as the courts allow the child to stay with the mother until custody is determined).

 

He has not been following his diet whiel staying with her and has been having severe tics. The Child Guardian is now insisting on medicaton. However, he has only heard one side of the story.

 

I would like to finish Biofeedback first as I have seen the side effects of medication (especially the personality changes and lethargy) and it would break my heart to see my vibrant young man turned into a zombie.

 

If anyone here is on, or was on Tourettes medications, would you please send me an e-mail with your experience and the side-effects that made you seek alternative treatments. This way I can show the Child Guardian (who thinks that the meds will make the tics magically disappear) that it is too often that the medication is worse than the disease.

 

My e-mail address is:

marmocida@att.net

 

Thank You

[Guest Betty]

I am so sorry for your predicament. it is really heart wrenching. I can only tell you my experience. It is not so much adverse about medication as it is about the importance of alternate methods. My son was put on a low doseof Clonodine at bedtime. It makes him very tired so I can't give it during the day. He does wake up with nightmares and has unexplained crying moments sometimes. With that said, it has helped a lot with is problems focusing and sitting still!! I am grateful for that.It has not kept the tics away. We did not get the tics under control until we added a supplement program <BonnieGr@aol.com>

Good luck and keep up the support for your son. he needs you.

[Sheila]

Mike--That's such a difficult spot to be in. You can do a google search for the drug name and "warnings" or "side effects" and come up with many references that list problems. You can also go to the manufacturer's site and print out the entire package insert. Of course that's also available at the pharmacy but is so tiny that it's almost impossible to read. I believe you will be better served by using standardized statements than by collecting parental observations. The manufacturer should also provide research, which gives some idea of the percentage the drug helped--and you will also find the age group it is tested for on the insert--often not for children.

 

Betty's comment gives a positive view of using a low dose medication--though clearly with significant side effects. Just curious--have you ever had Matthew tested for heavy metals? Best wishes, Sheila

[Guest Betty]

Sheila,

I am fairly new and still need education in some areas. Can you please tell me what the connection is to "heavy metals" as you recommended for Matthew. My son was diagnosed after motor tics gave way to vocal tics and focusing issues as well as impulsivity. It all came about quickly and at once after an infection. He was positive in blood test fro strep. But low #.

I am getting concerned about the clonodine because he has been much more emotional lately and I fear this to be the worst side effect. He has been on .1mg for almost 3 months. any advice is so helpful.

Thank you

Betty

[Sheila]

Betty, from what we have been able to learn about treating tics and other TS symtpoms without drugs, a multidisciplinary approach seems to work best. This means doing a few things at the same time--like changing the diet, adding nutritional supplements, making some changes to the home environment if there are allergies or chemical sensitivities (which there often are, even if no one had thought to consider this before)--and removing any heavy metals from the body if they exist.

 

If someone's TS symptoms are linked to exposed to heavy metals such as mercury, lead, or cadmium--which are toxic to the brain--then it is important to remove them from the body or the other approaches, while potentially helpful, will be less successful.

 

Taking a good look at heavy metals usually entails lab work by someone experienced in this area and who can treat by detoxifying the body. Other toxins affecting the brain are pesticides, typical cleaners and fragrances, and some chemicals added do foods.

 

More and more environmental reports are coming out that show the negative effect of toxins on our kids. They are sometimes detected in the blood of the child from birth--and also increase with numerous exposures while they are growing up.

 

If you are looking for a place to start, I would sincerely suggest you think about getting our back issues of our publication Latitudes. They are not out of date as far as being relevant to parents, and each issue has articles and other informtion on treating Tourette syndrome without drugs. We offer them very reasonably--you will receive 5 years worth for $35--while a one year subscription is $45. That would be my advice, were I in your shoes.

 

I know it can seem overwhelming in the beginning, but there is a good chance you can find approaches that will help your son need less medication, possibly none. There are no promises, but I agree that the side effects he is experiencing are of concern, and you may decide it is worth the effort to find out if something else can help, starting with diet, nutrition, and the home environment.

 

Please keep in touch. Best wishes, Sheila

[Guest Jennifer]

Dear Betty,

 

When our son started developing tics, aside from seeing his pediatrician I was frantically looking for answers in health books. I was at Barnes and Nobles one day looking through I believe what is called "The Health Bible", it had a chapter on Tourettes's syndrome and one of the first tests mentioned was a heavy metal test. I informed our pediatrician that we wanted to have our son's heavy metal level checked, he very kindly told me that, that would be fine, but he was sure the tests would not produce any results. Needless to say he was quite surprised when the levels came back at a 97% toxicity rate. He was high in antimony, cadmium,aluminum,arsenic and almost toxic levels of lead and mercury. For the past year we have concentrated our efforts on detoxification as well as supplementation. For the past three weeks he has been completely tic free for the first time in almost 2 years. Although heavy metals are not the only problem, they are certainly a big part. Heavy metals take the place and displace the neccessary minerals in the body. I can't remember if their charge is positive or negative, but it is opposite of essential minerals so it nutralizes the cell and nerve impulses in the body, thus breaking down communication within the body. Removing heavy metals is not the only answer. The body needs to heal from the damage. Fatty acid supplementation has shown to be very effective. However, indiscriminate supplemenation is not advised. There are blood tests available to know which fatty acids are neccessary.

 

Good Luck,

 

Jennifer