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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.
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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.
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