Down Syndrome and Vitamin Therapy. Chapter One: 20 Questions

Kent MacLeod, B.Sc. Phm
Down Syndrome and Vitamin Therapy
Chapter 1, 20 Questions, p. 3-14
© 2003 KEMANSO Publishing Inc.

Printed with the permission of Sarah Sanford, Marketing

WHEN THE TELEPHONE RINGS in my office at Nutri-Chem, I never know what awaits me on the other end of the line. Often over the years, the caller has been a mother or father of a child with Down Syndrome. Sometimes it's an expectant parent who has just learned that their baby will be born with this genetic disorder. Like all new parents, they're full of questions and anxieties. And like all parents who love their children, they start looking for ways to help their son or daughter overcome the challenges they know lie ahead. This search has led them to Nutri-Chem to find out whether nutritional supplements might benefit their child. Some know a great deal and challenge me with sophisticated questions and requests. Others are at the beginning of their odyssey of learning, and need very basic information.

What Will I Learn?

Will vitamins make my child smarter?
Will vitamins improve my child's stature?
Will vitamins improve my child's immune system?

     Parents of children with Down Syndrome have been responsible for many of the positive social, medical, educational and legislative changes affecting the lives of their children that have occurred over the last 30 years. Life is better today for people with Down Syndrome — they are living longer, healthier lives and enjoying life in the community. Yet it's still true that in many areas of science, therapies proven effective for the general population are viewed with cynicism in the presence of that extra 21st chromosome.
      As a pharmacist specializing in nutritional therapies, I have always been guided by one operating principle: solve the problem while doing no harm. When research validates a safe nutritional approach to a health problem, why withhold that therapy to a family simply because their child has Down Syndrome?
     In my work, I see similar issues with regard to pain management. When someone is experiencing extreme pain, we compound and use transdermal analgesic pain killers for nerve pain, whether or not the pain has been caused by something genetic or by an accident. We are working on trying to solve the problem of pain regardless of the cause of that pain. Why is this approach not used in Down Syndrome? Why does the genetic component of Down Syndrome preclude a nutritional solution to problem solving even when that solution is proven helpful?
     Information about specific problems and their links to nutrition can be found in the following chapters. But since so much of our work at Nutri-Chem has been driven by the problems parents bring to us, I'd like to give you brief answers here to some of the most commonly-asked questions I've had over the years. — K.M.

Cause and research

Is there anything I could have done before or during my pregnancy to prevent having a child with Down Syndrome?
New research is showing that two issues are implicated in the origin of the genetic disorder: functional folic acid deficiency, and oxidative stress in the mother during pregnancy. Folic acid is necessary for a process called methylation and formation of DNA. Oxidative stress damages cells and the genetic material they contain.

What research has Nutri-Chem done in Down Syndrome?
As one example, Nutri-Chem enlisted the services of Dr. Marie Peeters-Ney to independently study the effects of MSBPlus on children with Down Syndrome. The study focussed on biological, developmental and immune issues before and after treatment with MSBPlus. Dr. Peeters-Ney's research concluded that the use of MSBPlus resulted in a 50% reduction of infections and a 65% increase in overall health of children with Down Syndrome.¹ We continue to undertake research in this area.

Mental functioning (I.Q.)

Will vitamins make my child smarter?
New studies show that vitamin supplementation has a positive impact on nonverbal I.Q. and that the effect is particularly dramatic in children who are malnourished (see Chapter 3: Vitamins and Your Child's Intelligence).² Given the multiple effects of Down Syndrome on the body's ability to absorb, process and utilize nutrients, it is logical to believe that supplementation can have a positive effect on the I.Q. of children with Down Syndrome.

Are there any drugs that will help my child's intelligence?
At this point there is no evidence that any drug improves intelligence in children. There are studies on piracetam and two small studies on aricept in Down Syndrome. Several small studies have shown benefits of piracetam in Down Syndrome. Other small studies have shown no benefits to piracetam in Down syndrome.^{3, 4, 5, 6} Anecdotally, parents have reported significant benefits for children with Down Syndrome with the use of piracetam. At this point it would be difficult to say there is enough evidence in favour of or against the use of piracetam in Down Syndrome. Aricept has been used for treating patients with Alzheimer's disease to improve memory loss. It has shown small, if any, results and significant side effects.^{7, 8}

Appearance and speech

Will vitamins change my child's stature?
Although it has not been studied long-term with children with Down Syndrome, we have evidence that chronic nutritional deficiencies will affect stature.^{9, 10} Chronic zinc deficiency has been associated with short stature. Zinc supplements have significantly improved height and rate of growth in non-Down Syndrome children of short stature. Zinc's benefit on stature may be related to its positive effect on the thyroid. In Down Syndrome, both stature and thyroid problems are prevalent. It is important to make sure that a shorter heavier stature is not due to a nutritional cause rather than a genetic cause.

My child is obese. What can I do?
The first thing to check is thyroid function. The problem with this test today is that the ranges of normal are becoming wider to catch more individuals with low thyroid function. So many lab tests are now showing low thyroid function that it is now deemed "normal." In effect, we have moved the normal values to accommodate more people. This in turn means individuals are told they have normal thyroid function, even though they have all the symptoms of low thyroid including weight gain. Therefore, weight gain symptoms and basal metabolic rate through body temperature are simple ways to determine low thyroid function. Generally individuals with Down Syndrome have a lower metabolic rate which means they have reduced caloric requirements. However, wholesale restriction of food to combat obesity results in loss of muscle tone and significant nutritional deficiencies. The way to combat obesity is with the correct balance of fat, protein, low glycemic index carbohydrates and the correct fats and oils, together with nutritional supplementation.

Will vitamins help my child's speech?
It has been proven that children with Down Syndrome who have fewer ear infections have better speech.¹¹ This can be accomplished by supporting your child's immune system with nutritional supplements. This is discussed in more depth in Chapter 5: Understanding Antibiotics and Ear Infections, and in Chapter 9: The Immune and Thyroid Systems.

Immune system

Will vitamins improve my child's immune system?
Yes, vitamins have been shown to improve the immune systems of children with Down Syndrome.^{12, 13, 14, 15, 16} See Chapter 9: The Immune and Thyroid Systems.

What can I do for my child's chronic sinus and respiratory infections?
Several nutrients are crucial to preventing infections by strengthening your child's immune system. These are known as the immune-boosters: vitamin A, zinc, vitamin C, echinacea and herbs that stimulate the immune system. At Nutri-Chem, we use a homeopathic product called Euphorbium. It is an anti-inflamatory that stimulates the body's immune and decongestant responses.

What can I do about my child's skin problems?
Several key nutrients, namely vitamin A and zinc, have been shown to improve skin problems in children with Down Syndrome. Essential fatty acids such as EPA and DHA are also very effective in clearing up dry skin allergic response in children with Down Syndrome. Nutri-Chem compounds EPA, DHA, zinc and vitamin A in skin creams to accelerate the benefit of these nutrients.

Digestion

Are there any natural remedies to improve bowel function?
Absolutely. If your child is constipated, the first thing to check is thyroid function as the cause. The cornerstones of good bowel health are fibre, probiotics such as acidophilus, water, and good enzymes. If required, stool softeners can be used. If your child has been on antibiotics, use lots and lots of acidophilus, a probiotic used to restore the healthy bacteria needed for healthy bowel movements. I often recommend upwards of 50 billion units of acidophilus a day for this purpose. I also recommend Carbo Aid which contains enzymes that are found in the fragile and easily-destroyed lining of the bowel. Carbo Aid is especially helpful in reducing gas and bloating and any irritations that result from eating fruits, milks, starches and the acids found in vitamins. See Chapter 7: The Digestive System for more on this topic.

Will vitamins help my teenager with Down Syndrome?
Individuals with Down Syndrome face different issues at different ages. Parents of young children are generally interested in maximizing growth and intellectual development. Parents of teenagers or young adults often have the same ongoing health concerns as well as issues associated with mood. Older adults with Down Syndrome face the issue of maintaining intellectual abilities. The answer is that certain symptoms and issues are more amenable to nutritional treatments during specific phases of growth and development. However, overall nutritional needs must be met at every stage: zinc is no less essential at 94 than it is at 4, though you don't have the same developmental issues at 94 that you have at 4. You are never too old to receive essential nutrients.

Other medical issues

DOWN SYNDROME

Down Syndrome was first identified by a British doctor, John Langdon Down, in 1866. Dr. Down described the set of common characteristics associated with the disorder, but it was not until 1959 that the cause of Down Syndrome was identified as being a third chromosome on the set of the 21st chromosome. This is the origin of the term "Trisomy 21" used to describe Down Syndrome.
Each cell in the body contains chromosomes which carry the genetic material DNA (deoxyribonucleic acid). As these cells, the basic unit of all living organisms, divide and form into different types (brain cells, liver cells, blood cells, etc.) the complete DNA is reproduced in each and every one. Thus, the extra chromosome found in Down Syndrome affects each and every process in the body.
Some of the problems associated with Down Syndrome have been well documented: small mouth and obstructed airways, heart defects, intestinal malformations, visual and hearing impairments and altered mental development. Children with Down Syndrome are at higher risk for thyroid problems, Autism and leukemia. They also have a universal susceptibility to Alzheimer's disease occurring at a young age.
The extra chromosome in Down Syndrome is like a factory worker on an assembly line who works twice as fast as the other workers. This will create too much of some materials, and not enough of others — the entire production process is affected.
There is still much to understand about the origins of Down Syndrome, and all the ways in which the presence of an extra chromosome affects the body's processes. In the meantime, great strides have been made toward improving the health and development for children now born with Down Syndrome. Medical services such as life-saving heart surgeries once denied to infants because they had Down Syndrome are now routinely performed. And access to schools, recreation and family life have resulted in developmental achievements previously thought impossible for people with Down Syndrome.

What are the early signs of leukemia my child's doctor may not be aware of?
Children with Down Syndrome are at higher risk for leukemia. Early warning signs may include changes in the size and shape of red blood cells and specific changes in the Complete Blood Count (CBC) that may indicate early onset of certain leukemias. Your doctor should be made aware that there is a higher risk of leukemia in children with Down Syndrome.

Are there lab tests that have proven beneficial for my child?
Absolutely. Even the most conservative physicians are recommending zinc assessments for children with Down Syndrome because it has been shown to be deficient.¹⁷ Some of the lab tests I have found to be beneficial are: thyroid function tests, Complete Blood Count (CBC), iron, iron binding and ferritin, as well as nutritional tests for antioxidants, amino acids, essential fatty acids, and organic acids which screen for a host of nutritional and biochemical abnormalities. The latter may include mythelation problems, heavy metal toxicity, copper deficiency, carnitine deficiency, B1 vitamin deficiency, biotin, B12 deficiency, lipoic acid and glutathion deficiency and mitocondrial defect.

Are there any drugs that pose a risk to my child?
Yes. These include anaesthetics, methotrexate, anti-cholinergic drugs which may be used pre-operatively or for bladder or bowel disturbances, and certain antibiotics. (See Chapter 6: Drugs and Down Syndrome for further discussion on this topic.)

My child is going to have surgery. Is there anything I should know that my doctor might not have told me?
Yes. Because of smaller airways, there is greater likelihood for airway obstruction. Children with Down Syndrome also have greater sensitivity to drugs, including pre-operative medications, and problems with drug clearance from their system.

My child has Down Syndrome and Autism. Is there a link between these two conditions?
Absolutely. There is a much higher incidence of Autism in Down Syndrome. What is reported is that children with Down Syndrome are 20 times more likely to have Autism than children in the general population. Current opinion about Autism in the non-Down Syndrome population is that it is a genetic fragility which can be triggered by environmental effects or immunological disfunction.^{18, 19} See Chapter 4: Autism and Down Syndrome for more.

Are vaccines harmful for my child?
There is no proven link between vaccines and Autism. However, a recent Centre for Disease Control study linked thimerosal 9 mercury containing vaccines to neurological symptoms.²⁰ It is prudent at this point to ensure your child is using thimerosal-free or mercury-free vaccines.

Vitamin safety

Are vitamins harmful?
There is no evidence that in safe doses vitamins present any risk of harm. There are no reported deaths attributable to the use of supplemental vitamins. However, according to the U.S. Food and Drug Administration, there were 100,000 deaths in hospitals alone in one year caused by drug medications.²¹

How do I know what brand of vitamins to take?
You should look at the quality assurance methods used by the compounding company. Are there regular assays (tests) of the product? Are there pharmaceutical chemists involved in the compounding? Does the company use top-quality ingredients? Is the taste made acceptable for your child without the use of unsafe chemical substances?

Endnotes

Peeters, M., and MacLeod, K. (1999) Unpublished data. Reviewed in Bridges 4(1).
See endnotes on Chapter 3.
Vampirelli, P. (1978) [Piracetam in child neuropsychiatry. Clinical experimentation in a child neuropsychiatry department]. Minerva Pediatrica. 30(4): 373-6. Italian
Lobaugh, N.J. et al. (2001) "Piracetam therapy does not enhance cognitive functioning in children with Down syndrome." Archives of Pediatric and Adolescent Medicine. 155(4): 442-8.
Kishnani, P.S., et al. (1999) "Cholinergic therapy for Down's syndrome." The Lancet 353: 1064-5.
Hemingway-Eltomey, J.M., Lerner, A.J. (1999) "Adverse effects of donepezil in treating Alzheimer's disease associated with Down's syndrome" (letter). American Journal of Psychiatry 156: 1470.
Birks, J.S. et al (2000) "Donepezil for mild and moderate Alzheimer's disease." Cochrane Database Syst Rev. (4): CD001190.
Rogers, S.L. et al. (1998) "Donepezil improves cognition and global function in Alzheimer disease: a 15-week, double-blind, placebo-controlled study." Donepezil Study Group. Archives of Internal Medicine. 158(9): 1021-31.
Perrone, L., et al. (1999) "Long-term zinc and iron supplementation in children of short stature: effect of growth and on trace element content in tissues." Journal of Trace Elements in Medicine and Biology. 13(1-2): 51-6.
Kaji, M., et al. (1998) "Studies to determine the usefulness of the zinc clearance test to diagnose marginal zinc deficiency and the effects of oral zinc supplementation for short children." Journal of the American College of Nutrition. 17(4): 388-91.
Whiteman, B., et al. (1986) "Relationship of otitis media and language impairment in adolescents with Down syndrome." Mental Retardation 24: 353-6.
Bjorksten, B., et al. (1980) "Zinc and immune function in Down's syndrome." Acta Paediatrica Scand 69: 183-187.
Fabris, N., et al. (1993) "Psychoendocrine - immune interactions in Down's syndrome: Role of zinc. In: "Growth Hormone Treatment in Down's syndrome (ed. S. Castells and K.E. Wisniewski, John Wiley & Sons Ltd, London) p203-217.
Franceschi, C., et al. (1988) "Oral zinc supplementation in Down's syndrome: restoration of thymic endocrine activity and of some immune defects." Journal of Mental Deficiency Research 32: 169-181.
Lockitch, G., et al. (1989) "Infection and immunity in Down syndrome: A trial of long-term low oral doses of zinc." Journal of Pediatrics 114: 781-7.
Anneren, G., et al. (1990) "Increase in serum concentrations of IgG2 and IgG4 by selenium supplementation in children with Down's syndrome." Archives of Disease in Childhood 65: 1353-1355.
Pueschel, S. (1999) "Gastrointestinal concerns and nutritional issues in persons with Down syndrome." Down Syndrome Quarterly 4(4): 1-11.
Kent, L., et al. (1999) "Comorbidity of autistic spectrum disorders in children with Down syndrome." Developmental Medicine and Child Neurology 41(3): 153-8.
Kapell, D., et al. (1998) "Prevalence of chronic medical conditions in adults with mental retardation: comparison with the general population." Mental Retardation. 36(4): 269-79.
http://www.cdc.gov/nip/vacsafe/concerns/thimerosal/faqs-mercury.htm
Starfield, B. (2000) "Is US Health Really the Best in the World?" Journal of the American Medical Association 284(4): 483-85.