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Case Reports for Tourette Syndrome



For the first time, natural treatments for tic disorders are reviewed and explained in a comprehensive and reader-friendly book. Learn how to heal the problem, not just medicate it. Click
here for more information.
 



Introduction
: These reports are anecdotal. The sections on nutrition and environmental medicine/allergy are typical of numerous reports ACN has received. However, the section on EEG Biofeedback is the only comprehensive report we have received on that subject, and we are requesting readers with experience in this area to share information on this.

Because there are no studies on these therapies for Tourette syndrome, there is no way to predict how they might help a particular individual’s symptoms. 


Environmental Medicine/Allergy

A parent report

The Beginning

Finding help for Bryan's Tourette syndrome (TS) has been a difficult odyssey. Fortunately, the Association for Comprehensive NeuroTherapy 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.

The tics progressed to a full-body jerk that was so bad he often could not sit in a chair without falling out.

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.
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 articles 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, M.D., 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-¾crying 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 problem, 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. Everyday 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.

Excerpted from Latitudes

 

A Nutritional Approach to Tourette Syndrome

From a pharmacist-father

The First Signs

As parents, we thought Kirk was just being a cute preschooler. He had some tics and unusual movements: he would chirp, whistle, skip, jump up to try and touch the door facing, nod his head, and sometimes twirl around while walking. He often raised his eyebrows, and we trimmed his bangs, thinking that was the cause. But by the time he was six, we began to worry that perhaps there was more to these “habits,” as we called them, than we understood. We had begun debating what type of doctor we should take him to when an article on Tourette syndrome (TS) appeared in the Sunday Parade magazine. Remarkably, it allowed us to make our own diagnosis and also provided information on the national Tourette Syndrome Association, from which we could receive a list of physicians in our area who treated this condition.

We received the name of a doctor nearby in Little Rock, Arkansas. Though Kirk did not exhibit symptoms during the office visit, the doctor made a definite diagnosis of TS based on our explanation of Kirk’s actions. Kirk was placed on Haldol, with gradually increasing doses, but it did not have a positive effect. Over the next few years, the medication was increased to a level that made him drowsy and listless, yet there was no reduction in tics. At this point, he exhibited 10 to 12 different noises or movements. The motor tics, which had started with his head, had now reached all extremities.  These symptoms were highly noticeable and were beginning to be a social problem. Symptoms were worse during times of stress, such as the start of school and the baseball season, and during holidays (Easter, Christmas, Halloween), when he consumed large amounts of sweets, which he craved.

Finding Help

During a routine consultation with my wife, a physician asked if we had considered seeing a nutritionist for Kirk. We felt that diet did affect Kirk’s TS symptoms, and we were receptive to this. During the first visit, Kirk happened to be very agitated and exhibited a high level of tics. The nutritionist suggested that Kirk take an amino acid complex while in his office. We agreed, and Kirk took the nutritionist-recommended dose. Within 10 minutes, Kirk was calm and relaxed, and free of tics for the first time in many years. We then began nutritional treatment and a gradual reduction of Haldol, until he was completely off the medication. Many lab tests were performed on Kirk, including: amino acid levels, mineral levels, and cytotoxic food sensitivity testing. Kirk had no severe allergies but did have mild, previously unrecognized sensitivities to many foods, below-normal levels for certain amino acids, and some very low mineral levels.

We began avoiding white flour, chocolate, food colorings, black pepper, sugar, and stimulants such as caffeine. One of the mainstays of his nutritional treatment was the amino blend which he took along with another amino acid supplement and vitamin/mineral supplements. Over the next few months, we observed significant improvements. Kirk was calm, more alert, and most tics had subsided. The symptoms decreased initially in the extremities then gradually in the shoulder and head area. Dietary changes were not easy, but Kirk was a very good kid and did everything we asked. We implemented this therapy under the care of a neurologist. He was aware of the amino acid supplements and told us it was surely worth a try—and, boy, was it ever worth it!

Kirk’s condition improved steadily as time went on. He still follows a healthy diet and avoids stimulants, but no longer needs any strict dietary measures. We still see a few symptoms, but others do not notice them, and even Kirk may not be aware of them. He continues to take vitamin supplements regularly but no longer feels he needs amino acid therapy. He recently entered the University of Arkansas School of Medicine.    Excerpted from Latitudes

Editor’s note: While we have received other reports of successful treatment of TS with amino acids, please be aware that indiscriminate supplementation is not advisable. Amino acid supplementation is contra-indicated for certain medical conditions. We recommend seeking medical advice from professionals who are well trained in nutritional therapy. Laboratory testing of amino acid levels may be recommended.







Supplements and Tourette Syndrome

From an adult with TS. This letter was received from a man who, after successful treatment with nutrients, was just beginning to inform those near to him that he has had TS for over forty years.: Arial; color: #000033"> and I've had Tourette syndrome since I was nine or ten. I was not diagnosed until late in my life, and I never took any medications. Until six months ago, I thought I would just have to live with my tics. Now I believe that may not be so.

As a young child, I had severe body tics and I also flexed my jaw, ground my teeth, and jerked my head. As I moved through the teen years, the head jerking stopped and my other tics stabilized, although they still were quite noticeable. Having Tourette syndrome, and not knowing what was wrong with me, seriously affected my social life. I was a loner as a teen; I was afraid to associate with other kids. My reaction to having TS may have been one of the main reasons I have never married. And it probably made me want to overachieve in other areas of my life.

I have a Ph.D. in mathematics, am a former semi-pro athlete and professional league referee — heavy physical exercise always gave me hours of tic free time — and am now a senior executive in the computer software industry. Yet, tics continued to embarrass and inhibit me socially, even after I noticed their severity declining again when I reached my forties. I could not bring myself to talk about my condition with anyone, and all around me were left to wonder what was wrong.
 

Discovering Supplements

At the urging of my sister, whose 9-year-old child with TS has responded well to vitamins, I began a supplement program. On the first day I noticed a change in the way my body felt-¾the electric tension in my muscles that has been my constant companion since childhood began to subside. By the end of the first week, my tics began to lessen, and by the end of the first month I was virtually tic free.

When I do have flare ups, they are further apart than before and each one is less severe than the last. Now, I have only very minor flare ups, and they occur only when I am under extreme stress at work. This change in my condition has made every difference in my life. For the first time, I am telling people that I have Tourette Syndrome. I have told co-workers and I've told friends I've known for decades, who have always wondered what was going on but were afraid to ask. I'm more self-confident. I'm more comfortable doing public speaking at work and I'm doing more of it. I'm more successful in my relations with my colleagues, with my friends, and with women.

I know that I am not the only person with TS who is having success with supplements. Not all stories will be as dramatic as mine — and some people may have had no luck at all with this approach — but all stories need to be told; it's the only way to convince the scientific community to begin researching this area.

From the editor: The nutrient/diet approach this man used was similar to that developed by Bonnie Grimaldi (www.BonnieGr.com).

                                                      


 

EEG Biofeedback

We have had few reports of the use of biofeedback for TS and are asking readers and clinicians to share their experiences with us—both positive and negative. This is from a parent and clinician.
 

At Five Years of Age

For the past several months, I’ve wanted to share my son’s success with biofeedback with           Latitudes readers. The fear of giving someone false hope on an alternative treatment that is so expensive has held me back until now. The fact is that biofeedback did work for Josh and his story may help others with Attention Deficit Disorders (ADD/ADHD) or Tourette syndrome (TS).

When Josh was in kindergarten, he began clearing his throat frequently. I took him to his pediatrician and was told there was nothing wrong with him. It would be two years before I would learn that this throat clearing was actually a vocal tic. First grade was a breeze except for some concerns about a short attention span. He had no noticeable tics during that year, but second grade was another story. Early in the school year, Josh’s teacher felt he wasn’t performing up to his ability and she was concerned with his daydreaming. She was strict with Josh, thinking that was the approach he needed, and told me that she didn’t think Josh cared about his work. Meanwhile, he began to have trouble sleeping and developed some small tics, like shoulder shrugging and humming.

I felt his teacher wanted a quick fix, but I was determined he would not be given Ritalin to “fix” him. My husband and I decided it was time to seek professional help. Looking back, I realize Josh’s teacher was genuinely concerned about the attention problems, and with her 20 years of teaching experience, she knew that the sooner we came up with a solution, the less chance this could turn into a learning disability. I began looking for a new pediatrician, and started researching ADD. I met a woman who recommended three books, one of which was The ADD Book by Dr. William Sears and Dr. Lynda Thompson. She said it had a chapter on neurofeedback, and she gave me the location of a local biofeedback clinic. I went home with all three books, but could not put The ADD Book down. It described what ADD was, gave strategies to manage ADD, discussed the importance of diet, and explained neurofeedback.


The First EEG Biofeedback Treatments

Even after reading positive articles on biofeedback, I had some fears. The thought of manipulating Josh’s brain waves was not comforting to me. I called Lynda Lollar at the EEG Biofeedback Center in Birmingham, Alabama. Lynda assured me that biofeedback was not going to hurt Josh. We set up a consultation then began therapy in October 1998. After nine sessions, I thought I saw an improvement in his ability to fall asleep. But I was still skeptical. The next month, we had an appointment with a pediatrician. Because of Josh’s tics, he referred us to a psychologist and a pediatric neurologist. In less than 15 minutes, the neurologist told us that Josh had Tourette syndrome. He handed me two pamphlets and told me there was a wealth of information on the Internet and that I should become involved with the Tourette Syndrome Association. I left with more questions than answers.

Josh’s teacher and I cried together over the TS diagnosis. She moved his desk closer to her and suggested we work together to help Josh. She remained firm and fair with the classroom discipline, but encouraged Josh to do his best with the new knowledge that some days would be better than others. Each day began with a clean slate, and Josh responded positively. My attitude toward the teacher improved when I realized we were on the same team. We continued with regular EEG biofeedback. After the completion of 30 sessions, there was a vast improvement in his attention span—and his tics had disappeared! In May, 1999, Josh’s teacher told me she saw no evidence in the classroom of either ADD or TS. I was confident we had found the cure. In June, my husband accepted a position with another company in Georgia. Josh had completed 48 sessions of biofeedback when we moved. I thought the improvements he had made were with him for a lifetime, but over the next few months the tics began to slowly come back. Three days before he was to start school, Josh was humming and seemed to be in constant motion. My immediate reaction was that the biofeedback had not really worked, so we began looking for other ways to help.

One day my husband gave me an article he’d copied off the Latitudes web site. I called and spoke with the editor, Sheila Rogers. The conversation we had reminded me how important it is to share our experiences with others in similar situations. I ordered all the back issues of Latitudes. When they arrived, I came upon an interview article in Vol. 2, #5, that renewed my faith in EEG biofeedback. Dr. Siegfried Othmer stated, “Young children with TS sometimes do not sustain their gains, and they need to continue the training at a certain ‘dose’ until their nervous systems mature at about age 12.”  We made the decision to drive to Alabama for a three-session weekend. I realized on the return trip home to Georgia that Josh had stopped humming. Within three days, all his tics had disappeared. We now try to make an occasional trip back to Birmingham for a biofeedback boost, and as the school year comes to a close, Josh continues to do very well.
 

In Closing

There are a few drawbacks to biofeedback therapy. It’s expensive, and many insurance companies don’t cover this type of treatment—but be sure to check. I found out that our insurance company will pay for it when there is a referral from a psychologist. Another disadvantage is that it takes several sessions to see results. You have to go into EEG biofeedback with a commitment to stick with it. It has been over one and a half years since we started this treatment, and we know without any reservation that biofeedback has helped Josh. I would like to close by including a paragraph written by Josh’s 3rd

Copyright ©2007 Association for Comprehensive NeuroTherapy. All Rights Reserved.

Latitudes
is a quarterly online publication of the Association for Comprehensive NeuroTherapy (ACN). Every issue has information on non-toxic approaches to autism, depression, obsessive compulsive disorder and anxiety, Tourette syndrome, learning disabilities and attention deficit disorder/hyperactivity. Subscription: $40. To order online click here. Or, fax address and credit card information to (561) 798-9820; checks can be made payable to ACN and sent to Latitudes Subscriptions, PO Box 2198, Broken Arrow, OK 74013.