Natural Treatment for Tourette Syndrome
[Bonnie Grimaldi]
[Sheila Rodgers]
Introduction
After much reading and research in the area of alternative treatment
for such neurological disorders as Tourette Syndrome and ADHD, I have become convinced
that alternative or holistic treatment does work in some cases.
Over the past 3 years I have received email from many parents
claiming good to excellent results using natural remedies to treat their child's Tourette
Syndrome and I have read of similar accounts with ADD and ADHD. Some people that
contact me do so for questionable motives, because they always have a sales pitch at the
end of the message that can be translated as "and you can buy the vitamins, minerals,
etc. from me."
Two people that I have come to respect very much that are dedicating
their time and efforts to alternative treatments for Tourette Syndrome are Ms. Sheila Rodgers and Ms. Bonnie Grimaldi.
If you do any Internet research on alternative or natural treatment for Tourette's on the
Internet and you don't come accross these ladies, your research is simply not
complete. Both have become Internet legends in this area and are doing it for a good
cause.
Sheila Rodgers is affiliated with the Association for Comprehensive
NeuroTherapy (ACN and publishes a quarterly newsletter called Latitudes which focuses on any alternative or integrative treatment that may be
beneficial for TS and accompanying disorders, including homeopathy,
EEG biofeedback, craniosacral therapy, etc.
Bonnie is a Medical Technologist and mother of a teenage son with
Tourette Syndrome, OCD and ADD. After an extensive period of reading and evaluating
scientific literature, Bonnie felt her teenage son with Tourette's might do better on a
regiment of specific vitamins, minerals, amino acids, etc. and developed a daily regiment
that has greatly minimized her sons ticcing (he is tic free most of the time).
Bonnie believes in her regiment and has made it public on the Internet and has graciously
allowed us to publish it below. She has received responses from 50 families who have
tried it with varying degrees of success. Like all remedies for these disorders, treatment
with natural supplements does not work for everyone. But many children and adults
have found success using supplements to treat their TS. Degree of success ranges
from minimal reduction of tics to becoming completely tic free. You will need to
read Sheila and Bonnie's sites to gain a better understanding of the scientific and
technical reasons this form of treatment holds merit.
My inclusion of this material should not be considered a professional
medical opinion or endorsement. I am not a medical professional. My reason for
including this information is simple -- I want to make readers of this website aware that
their are other treatment options for people with Tourette's and other disorders --
options beyond the potent drugs and pharmaceuticals currently used for these disorder.
These options work for some children and do not work for others.
If your child is not responding to drugs or wants to stop taking
drugs, you owe it to yourself to read more about treatment with supplements, diet changes
and nutrition so that you can make an informed decision. Should you elect to try taking
supplements for Tourette's or orther disorders, never abandon meds for these
conditions without being under a doctor's care. These meds should not be
stopped abruptly, as most require a slow "weaning off" process to prevent doing
serious harm or damage to one's health.
More information about Bonnie and Sheila and the work they are doing
can be found below:
[Bonnie Grimaldi]
[Sheila Rodgers]
Bonnie's Story
Bonnie Grimaldi, BSMT (ASCP)
Medical Technologist
Columbus, Ohio
Mother of teenage son with Tourette Syndrome,
Obsessive Compulsive Disorder, and ADD
My son, aged 17 with TS/OCD/ADD has tried almost all of the
medications known for these disorders with negative results and intolerable side effects.
In Dec. '95, I started him on vitamins and minerals after carefully researching the
scientific literature (I am a medical technologist with a graduate course in biochemistry)
on TS/OCD/ADD and autism (which I believe is part of the spectrum).
I meshed this with antecdotal info from doctors that post to
alt.support.tourette and from parents of autistic kids on an autism list and of TS kids on
alt.support.tourette concerning diet, allergies, etc. I have based my regiment on my
findings and are safe according to the PDR and other sources I have gathered at the OSU
medical library.
My son's tics began to be disruptive in school in the 5th grade and we started the
beginning of a 2 year trial of various combinations of medications. By the end of this
trial, he was failing in school, was being removed from the classroom at least 3 times a
day for disruptive tics, and was developing serious behaviour and attentional
problems.
We made a decision at a very low point, when we were considering
residential treatment, to go med free and try vitamins and minerals instead. Within 2 days
of starting the regimen, he was not disruptive anymore. By the next year (8th grade) he
was totally tic free in school with greatly reduced tics at home also. He is now tic free
most of the time.
Our family life is full again! His tics used to interfere with car
trips, restaurant outings, church, etc. due to his being triggered by his father's and
brother's voices and gestures, and coughs by anyone. He had also developed tics to sounds
of footsteps and of a hand hitting a desk, etc.
Now he is an honor student and made the varsity swim team as a
freshman and has lettered twice. In the 8th grade he was a Junior Olympian is USS
swimming. When he forgot to take his supplements once in 8th year, I got a call from his
teachers asking what had changed. In his 9th grade year, he didn't take his supplements
for a week when he went on a trip with his swim team and it took him a month to recover.
His teachers have asked for my help with other students and the school has recorded
"vitamin therapy" as a viable treatment option on his IEP.
I will post the individual supplements that work for my son and many others who have tried
it. I am using the below health food store to ship my supplements. Cas has the exact list
of what to order. She also has a tablet splitter for $5.76 available.
Cas
The Natural Health Food Store
809 E. Race
Searcy, Arkansas 72143
(501)-268-9585
casrifkin@hotmail.com
I have heard from over 50 families with TS and they all have had success, some more, some
less. My regimen is a safe guideline to follow and the exact amounts of my recommended
supplements vary slightly with different brands. The program that I have set up with Cas
works great. Some B complex and antioxidant formulas may differ slightly from what is on
this webpage, but avoid copper and iron containing supplements (unless lab tests have
found a deficiency in one of these).
The latitudes web page has info on TS and nutritional therapy that is similar to mine.
I would like you to take a few moments to fill out a survey concerning your use of
supplements for the treatment of TS symptoms. Just e-mail survey@latitudes.org and latitudes will send you a
survey through the postal service. This is very important to do if you would like to see
research studies done concerning TS and supplemental therapy.
Here is my list of supplements that I recommend:
Make sure that the vitamins are naturally coated, and that no sugar, preservatives,
artificial colors or flavors, chemical solvents, or specific things that you may be
allergic to are on the label. "USP" on the label is preferred.
The following recommendations are for those 10 yrs to adult (children 6 to 10 should
follow the dosages in brackets), who have normal, healthy liver, gallbladder, kidney and
heart functions and are not pregnant or nursing, or have active peptic ulcers. Always
consult your physician before taking any supplements to be sure. DISCLAIMER: This approach
may not work for everyone.
In the morning:
1. 1200 mg lecithin granules (1 to 2 tablespoons) or gel cap
2. Antioxidants
-Beta Carotene 10,000 I.U. (optional)
-Vitamin E 400 I.U. [200 I.U. for children 6-10]
-Vitamin C 500 mg.
-Zinc 30 mg.
-Selenium 15 mcg. (optional)
-Coenzyme Q10 30 mg. (optional)
-Glutathione (reduced) 25 mg.
3. Vitamin B complex capsule (B50 - 11
B factors) [children 6 to 10 should use a tablet form and cut it in 1/2 for half the dose]
-Vit B1 (thiamine) 50 mg
-Vit B2 (riboflavin) 50 mg
-Vit B6 (pyridoxine HCl) 50 mg
-Vit B12 (Cyanocobalamin) 50 mcg
-Biotin 100 mcg
-Pantothenic Acid 50 mg
-Folic Acid 50 to 400 mcg
-Niacinamide 50 mg
-Inositol 50 mg
-PABA 50 mg
-Choline 50 mg
4. NO FLUSH niacin (inositol nicotinate) a 500 mg capsule or tablet is divided in 1/2 to
get 250 mg. [children 6 to 10 should divide it in 1/4 to get 125 mg.]
5. Solary Grapenol Grapeseed Extract (1 mg. per pound body weight a day)
6. DHA 500 mg.
Afternoon:
50 mg of niacin tablets (regular, since no-flush doesn't come in 50 mg doses) [children 6
to 10 should cut this tablet in 1/2 for 25 mg] may be taken three times during the day as
needed for tics - decrease dose if flushing occurs. Flushing feels like a sunburn and may
itch or it may be a mild rash. This lasts only 15 minutes and is not an allergic reaction
and is not harmful.
DO NOT EXCEED 500 MG/DAY (250 MG/DAY FOR CHILDREN 6 TO 10) OF TOTAL NIACIN (NO-FLUSH
NIACIN, NIACINAMIDE IN B COMPLEX, AND REGULAR NIACIN) More can be taken with a doctor's
supervision - my son is supervised and takes 1600 mg of no-flush niacin a day.
Just before bed:
1. Amino Acid Chelated Calcium-Magnesium tablets
780 mg calcium
468 mg magnesium
(6 tablets of Schiff brand provides this - some prefer to take 2 tablets in the a.m. and 4
in the p.m.)
2. Vitamin B complex capsule/tablet - follow same directions as above
3. Taurine 500 mg
I give B complex for a balance of the B vitamins, so that a deficiency in one doesn't
occur.
Foods that contain tyramine should be avoided if increasing symptoms- they are chocolate
(large quantities), aged cheese, soy sauce, red wine, raisins, canned fish, pickled
herring, chicken livers, cured meats, and most alcoholic beverages. They interfere with
MAO inhibitors, if you are taking this kind of antidepressant, with severe consequences to
your health -hypertensive crisis. Tyramine is a monoamine which is eliminated by monoamine
oxidase (MAO). If MAO is inhibited, then tyramine is not broken down, releasing stores of
norepinephrine, which have been found to be increased in TS in several studies. Tyramine
also is an inhibitor of pyridoxal kinase, which decreases the active form of vitamin B6 in
the body.
Go to an allergist and get tested for food allergies. Eliminate these foods from your diet
to see if this helps, or try an elimination diet without the allergy testing. (Of course,
get tested for respiratory allergies also!). Recent studies have shown that food allergies
or sensitivites causes hyperactivity in the majority of cases. The allergy connection is
also implicated in TS.
Cut out aspartame (NutraSweet). The high phenylalanine blocks other "Large Neutral
Amino Acids", such as valine, leucine, isoleucine, tryptophan, tyrosine, histidine,
and methionine from entering the brain. Aspartic acid, which is in aspartame, is an
excitatory amino acid, which can act as a false transmitter, substituting for glutamic
acid (glutamate). MSG (monosodium glutamate) should be avoided, also because of its
glutamate portion, which excites neurons. Avoid caramel color, vanillin and yellow #5
(tartrazine). These inhibibit B6 activity.
Avoid pseudephedrine (Sudafed) containing decongestants and antihistamines. Eliminate
other dyes (especially azo dyes) that may cause adverse reactions - especially red dye #
40. Caffeine should be eliminated. It is a methylated xanthine stimulant of the
catecholamines, which are already stimulated in TS.
Essential fatty acids can be found in DHA and trout, crappie, haddock, sea bass, salmon,
cod, and/or cold water halibut (the fatty fish).
Don't ingest many foods high in sugar. The best diet approach may be a semi vegetarian
diet, which provides a balance of carbohydrates and protein, recognizing that adolescents
need more protein than adults.
For information about my hypothesis and why I have chosen these supplements for my program
please see:
Bonnie Grimaldi: Hypothesis.
Bonnie Grimaldi, BSMT (ASCP)
Medical Technologist, Laboratory
Bachelor of Science in Medical Technology from the University of Akron in Akron, Ohio Dec
1977
Graduate course in Biochemistry at the University of Akron
Certified by the American Society for Clinical Pathologists
MT(ASCP) # 115060 Aug. 1977.
e-mail: BonnieGr@aol.com
Sheila Rodgers and Latitudes is a quarterly newsletter
published by the Association for Comprehensive NeuroTherapy (ACN). Latitudes
focuses on any alternative or integrative treatment that may be beneficial for TS and
accompanying disorders, including homeopathy, EEG
biofeedback, craniosacral therapy, etc.
The goals of Latitudes include:
To
present current information in an professional and understandable format
To add
significantly to the ongoing call for unbiased, comprehensive research in nondrug
therapies
To promote
mutual respect between conventional and nonconventional practitioners
To encourage a
movement whereby medical politics will yield to medical partnership, with broad-based,
interdisciplinary boards being established to collaborate on these disorders--- disorders
for which a multi-faceted approach is expected to prove most successful
Latitudes contains cutting-edge articles from physicians, letters
from readers, updates on research and clinical findings, information from other networks,
editorials, and reviews of publications and new products. Each issue has articles that
specifically address autism, Tourette syndrome, attention disorders and learning problems.
One of the most frequent inquiries received by the Association for
Comprehensive NeuroTherapy relates to the use of supplements for Tourette syndrome (TS).
While anecdotal reports and physician case studies indicate that many TS individuals have
benefited from nutritional supplementation (often along with dietary and/or allergy
control), studies have not been conducted in this area. Families tend to experience
frustration and a lack of direction when confronting this issue.
Reader response is invited. We've included an example article below
-- Nutrition and TS, a reprint of an article that first appeared in the
newsletter Latitudes.
Nutrition and TS
by Albert Robbins, D.O.
From a nutritional standpoint, this is what I advise my patients who
suffer from neurologic allergy (allergy affecting the nervous system):
Hidden food and chemical allergy may make one nutritionally imbalanced. (Recommended
readings: Help for the Hyperactive Child, by William Crook, M.D. and Is This Your
Child’s World? by Doris Rapp, M.D.)
Medical history and physical examination may reveal signs of nutritional deficiencies.
These should be evaluated by appropriate medical tests and be properly treated.
There is no specific vitamin deficiency that has been associated with Tourette syndrome.
However, individuals may be helped by nutritional supplementation for vitamins, minerals,
and amino acids. Individuals with neurologic symptoms may benefit from a B-complex vitamin
supplement and supplementary minerals (nutritionally balanced).
Antioxidants are recommended to everyone in a form that is well tolerated. (Vitamins A, C,
E, and selenium).
Folic acid is important for neurologic functioning and detoxification.
Hypoglycemia, food allergy, food addiction and nutritional imbalances are related.
Caffeine should be eliminated from the diet.
Some allergic individuals have vitamin dependencies. This means they require higher
amounts of certain nutrients to function optimally. Some chemically sensitive individuals
benefit from nutritional supplements due to multiple problems. (Recommended reading:
Chemical Sensitivity, Vols. I and II, by William Rea, M.D., 1992, Lewis Publishers, Boca
Raton, Florida. Phone (800)
272-7737)
Niacinamide (vitamin B3) acts like a natural tranquilizer on the nervous system.
Zinc is a “tranquilizer” mineral. Eat foods high in zinc and magnesium. Zinc and
magnesium supplements may be very helpful in diminishing irritability and muscle
twitching.
Avoid all chemicallized foods. Avoid artificial sweeteners, colors, and dyes.
Eat organically grown foods whenever possible. Avoid pesticide exposure.
Some individuals benefit from vitamin B injections (preservative-free), especially vitamin
B12 (hydroxocobalamin).
Intravenous vitamin C and magnesium is helpful in some cases of neurologic
hypersensitivity; vitamin B6, B1 and calcium have also been observed to be
beneficial.
Albert Robbins, D.O., M.S.P.H.
400 South Dixie Hwy, Suite 210, Boca Raton, FL 33432; phone 561.395.3282
Jon Pangborn, Ph.D., received a doctoral degree in
chemical engineering. After working in nuclear research and the field of alternative
fuels, he became interested in the biochemistry of human metabolism. He developed a novel
procedure for evaluating amino acid analyses and founded Bionostics, Inc., as a consulting
organization. He is a holder of 9 U. S. patents, and author of over 200 publications and
presentations. Dr. Pangborn is Fellow of the American Institute of Chemists, is certified
as a Clinical Nutritionist, and serves regularly on the faculties of the American Academy
of Environmental Medicine and the American Academy of Otolaryngic Allergy. He works
closely with Dr. Bernard Rimland in the area of autism research, and also maintains a
database on Tourette syndrome.
Albert Robbins, D.O., F.A.A.E.M. Robbins
Environmental Medical center is located in Boca Raton, Florida. He is a Fellow of the
American Academy of Environmental Medicine, and Board Certified by the American
Osteopathic Board of Preventive Medicine/Occupational/Environmental Medicine. He is a
Diplomate of the International Board of Environmental Medicine and the American Board of
Environmental Medicine. Dr. Robbins specializes in the diagnosis and treatment of asthma,
allergies, and chemical sensitivity. Publications have focused on chemically-induced
illnesses. He serves as editor of the Environmental Physician. Dr. Robbins has
demonstrated a particular interest in Tourette syndrome and attention deficit disorders.
To the Tourette Syndrome Community — Families, Friends, and
Physicians:
url: http://www.latitudes.org/tssurvey.html
A New Survey
Many people with Tourette syndrome (TS) are trying vitamin regimens in an effort to
control symptoms. Some are also making dietary changes, addressing allergies, or using
other techniques. Due to reports of success by some families, many in the TS community
would like to see rigorous scientific studies conducted of these approaches. If studies
establish a link between any of these approaches and TS symptoms, this would help
introduce non-drug alternatives to a wider audience.
To encourage the research establishment to fund and conduct such studies, concerned
parents have initiated a move to formally collect information on supplement use and
symptoms of TS and related conditions. We ask that you please take a few minutes to
printout, complete and return the survey form below, even if you have not pursued
nutritional therapy.
In developing this survey, we consulted experts in Tourette syndrome, nutrition, and
epidemiology, all of whom made valuable suggestions. We need a large number of responses
to maximize the value of the survey. We hope we can count on your participation.
The Association for Comprehensive NeuroTherapy (ACN) will collect the survey forms. ACN is
a nonprofit organization devoted to the exploration of complementary treatments for
Tourette Syndrome and other neurological conditions. All responses will remain
confidential. ACN will remove all identifying information before sharing data from surveys
with the research community.
Thank you!
BJ Mantel, Bonnie Grimaldi, and Sheila Rogers (for ACN)
Survey of Supplements and Tourette Syndrome (35 kb)
http://www.latitudes.org/FinalSurvey.pdf
http://www.adobe.com/prodindex/acrobat/readstep.html
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