Finding help for Bryan’s Tourette syndrome (TS) has been a difficult odyssey. Fortunately, the Association for Comprehensive Neurotherapy (Latitudes.org) directed us to a physician who has finally been able to control his TS.
His health problems began when he cut his first tooth. It seemed that every new tooth resulted in a fever with ear infections or tonsillitis; each time, antibiotics were prescribed. At age two, Bryan had tubes put in his ears; frequent sore throats and congestion continued. By age four, he was quite difficult to live with! He was irritable and didn’t play well with peers. No matter what discipline my husband and I tried, it didn’t make a difference. Each year after that, things got more difficult. By third grade he had few friends and seemed depressed. Around this time he had his tonsils removed.
Months later we noticed a facial movement: Bryan would pull down his top lip to stretch or move his nose and would open his mouth wide at the same time. Along with this he developed limb jerks. It was very embarrassing for him, and we were devastated when the tics progressed to a full-body jerk that was so bad he often could not sit in a chair without falling out. He was also jerking his neck so hard that I worried he could give himself whiplash. Our doctor ran all sort of tests but could not find what was wrong and referred us to a neurologist. Meanwhile, Bryan’s jerking became so severe that one day we rushed him to the emergency room, afraid that he would injure himself. There, a pediatrician admitted Bryan, completed extensive tests including a spinal tap, and called in a specialist. Bryan received a diagnosis of seizures, anti-seizure medication, and a huge bill. The medication was so strong that Bryan would just lie around, showing no interest in TV, games, or socializing. We felt we had to take him off the drug.
The Battle of His Life
After a short time of what seemed like a remission, the tics returned, and vocalizations started. Sometimes Bryan would speak in a very high-pitched voice, and this was such a shock for all of us. We contacted a different physician, and this time we were told he had TS. A specialist was consulted who told us “we do not know what causes it, and there is no cure.” He prescribed medication.
When we left the office that day, we felt as if the life had been crushed out of us. Our ten-year-old son was in for the battle of his life. I began to research the medications and was very concerned about the side-effects. We spent the next several months with Bryan being switched from Haldol to Orap and back.
During this time, I informed the doctor that when Bryan had junk foods or did not eat a well-balanced meal, his tics and mood swings seemed worse. I repeatedly asked the doctor if foods or sugar could have anything to do with TS, and was always told that they did not. The reason for my concern was that I am hypoglycemic, and his grandmother is a diabetic.
Bryan was now depressed and had mood swings with attention difficulties. He was gaining weight steadily as a side-effect of his medication. Self-esteem was poor, and school had become unbearable for him. Bryan had reached a point that he would not even go out in public. He told me he just wanted to die.
A Family Decision
As a family, we decided that the side-effects of the medication were so troublesome that we needed to take him off the drugs. We then began to eliminate all sugar and caffeine, and cut back on carbohydrates. Within a couple of weeks, the tics were not as severe. Within four weeks, he had started dropping some of the extra weight. We traveled from South to North Carolina to try another neurologist who had been recommended to us. He suggested a medication that could help improve Bryan’s attention problems, but told us it might make his tics worse. Needless to say, we refrained from using that drug. When we returned home, I started researching again. I went to the health food store and gathered material on nutrition and supplements. I also requested a flyer from the Tourette Syndrome Association: “Comments on Alternative Therapies for Tourette Syndrome” (Ruth Braun, MD, 1983). The article stated that others had had some success with diet changes and vitamins. I started out with vitamins B12, B6, and C as well as lecithin, inositol, and zinc. Within a couple of weeks there was improvement, but I knew I needed more help.
One day, I saw the Donahue program featuring Dr. Doris Rapp. A guest on the show was a boy about Bryan’s age who had sugar, food, and chemical allergies and had been diagnosed with Tourette syndrome. The allergy treatment and change in diet was controlling his symptoms. I remember crying that day — crying for Bryan and for all the other children who could be going through the terrible pain of TS but who are really suffering from unrecognized allergies. I read Dr. Rapp’s book Is This Your Child? and located an environmental allergist.
I took Bryan to an environmental physician. He informed me that my suspicions had been right. Bryan was hypoglycemic, had multiple food allergies, chemical sensitivities, a yeast overgrowth, and environmental allergies. We took his advice seriously — this was a battle we would not lose! We have made tremendous progress. He has been on allergy neutralization shots for two and a half years, and we have made adjustments in his home environment and diet. We watch carefully for any reactions to food. (For example, we found that NutraSweet causes tics, hyperactivity, excessive body heat, and irritability. MSG and sodium nitrate cause personality and mood changes.)
Now, no one meeting Bryan would notice any tics. If he is very tired, we may see a slight eye twitch or arm motion at home. Bryan is an average student at school, and continues to improve, though this is where we have the most problems. He works very hard on controlling his health and educating others about his condition. Bryan feels he does not actually have TS, but has allergies which cause the symptoms of TS. He now performs in chorus concerts and recently sang and played piano at a children’s center and nursing home. Every day I thank God for what we have been shown through all of this. We are what we eat, drink, and breathe. We are very grateful to his doctor. Bryan can now live a normal life-without medication.