Down Syndrome with Growth Failure  
Linda Blevins, Division Director
The MAGIC Touch • Summer 1997
Vol. 8, Issue 2, pp. 19-20
  Reprinted with the permission of The MAGIC Foundation
1327 N. Harlem Avenue, Oak Park, IL 60302-1376
1 (800) 3 MAGIC 3
(708) 383-0808 Fax: (708) 383-0899

     Spring is here and so is ball season. The girls are quite the little ball players. With Hanna on first, Sarah on short stop and Jordan with his batting helmet and blue baseball glove we are living at the ball field.
     While it has been busy for the Blevins family it has also been busy on the Down syndrome side too. I have had the opportunity to attend conferences in St. Louis and in Shreveport. Thank you to those groups for putting on well managed and informative conferences. I was able to meet up with a few MAGIC members, have a little fun and gain some valuable information.

     Kent MacLeod of Nutri-Chem Labs was a lecturer at the Shreveport conference. Kent MacLeod spoke about the elevation of the enzyme SOD (superoxide dismutase) and its role in creating excessive amounts of free radicals. Oxidative stress results when there is an excess of free radicals in the body and there are insufficient defense mechanisms to destroy these free radicals.
     Overwhelming concern of these metabolic disturbances has prompted Nutri-Chem and the International Center for Metabolic Testing (ICMT) to initiate a three year research project to study oxidative stress levels in Down syndrome. As free radicals cause damage to DNA, proteins. and to lipids (fats) they generate a specific and exclusive metabolic byproduct, labeled an oxymarker. Oxymarker levels can be evaluated through a noninvasive urine test.
     The initial round of testing will measure the oxymarker levels in 100 children and a sibling. Test results will be used to establish a data base of controls. There will be no charge for those participating in the first round of testing. Innovative studies of this type will more accurately measure levels of oxidative damage and illuminate possible areas of treatment.
     The study of oxymarkers in Down syndrome is supported by the National Research Council of Canada (equivalent to the National Institutes of Health in the U.S.). private investors, a multinational biotechnology company and collaborations with medical professionals and educational institutes.
     If you are interested in having your children participate in the study you may contact ICMT. Involvement will entail filling out two questionnaires, a lab requisition form completed by your physician & a parental consent form.

WHO: ICMT - International Center for Metabolic Testing.
1305 Richmond Road
Ottawa, ON Canada K2B 7Y4
PHONE: (613) 820-6755
FAX: (613) 820-6985
SAMPLE: Non-invasive urine sample
     Positive results from a one year vitamin study on nutritional supplementation in children with Down syndrome were presented at the St. Louis Down syndrome conference in March. Dr. Lawrence G. Leichtman, MD, FAAP, FACMG of the Genetics and Disabilities Diagnostic Care Center of Virginia Beach. Virginia, has been evaluating and following children and adults with DS for nine years. In his practice he has followed 225 children and 60 adults. Of these patients. 32 were on nutritional supplementation.
     Dr. Leichtman stresses that this was not a double blind, placebo controlled study. Parents had approached him and ask him to monitor this therapy. Researching the scientific and medical literature. Dr. Leichtman concluded their was adequate rationale to support nutritional therapy and agreed to proceed.
     Participants in the study were matched for age, race, and sex. Parameters of the study included:
  1. physical exam initial and at 6 months
  2. developmental eval initial and at 6 months
  3. parent illness and side effect logs
  4. physicians records of illness, surgeries and hospitalizations
Laboratory protocol consisted of a wide range of blood tests:
  1. CBC
  2. thyroid (T3, T4, TSH)
  3. serum zinc, selenium, ferritin, transferrin
  4. vit A & E
  5. Lipid profile
  6. thymus functioning (CD3, CD4, CD8, IGA, IGM, IGG)
     The study compared 32 patients on nutritional supplementation to 175 patients on just a simple multivitamin. Results from the study reported a statistically significant difference in the treated group as compared to the controls. The treated group experienced better growth patterns, fewer ear infections, fewer placement of tubes, fewer upper respiratory infections, fewer gastroenteritis (diarrhea with dehydration) & 95% normalization of the immune system.
     Developmental testing did not reveal a significant difference in cognitive scores. Yet the study group showed a steady developmental curve and the control group tested with overall losses and plateaus in learning. The conference handout will be on file at MAGIC.

     It has long been established that a higher incidence of eye disorders (strabismus, nagastismus, congenital cataracts) are found in Down SYndrome. Recently a number of parents have contacted me to discuss vision issues their children are experiencing. Organizations supporting in depth vision screening are the Optometric Extension Program (OEP) at (714) 250-8070 and Parents Active for Vision Education (PAVE) at 800-PAVE-988.

     Traditional optometry i.e., functional optometry tests ones sight or the ability to read the bottom line on the Snellen chart to achieve 20/20 eyesight. This is a test of visual acuity, a single aspect of vision.
     Eyes are "wired" directly into the brain. Many people see just fine but their brain does not correctly process the information the eyes are receiving. Professionals estimate 75% of a persons learning arrives through the conduit of the eyes. The National Society for the Prevention of Blindness estimates 10 million school children in the US have undiagnosed vision problems. Further research on juvenile delinquents reveal 50% to 70% have significant learning related vision problems, vet 95% percent test with 20/20 visual acuity. Imagine the difficulty in learning if your visual perception is altered!
     Developmental or behavioral optometry is concerned with ones ability to see or perceive information, not just sight. If the information that comes from the eye is distorted, the brain may not interpret or relay the information correctly, making the person's behavior, activity or learning seem abnormal. Visual therapy is utilized to "normalize" the manner in which the brain processes visual information. Behavioral optometrist feel that as vision normalizes, so will behavior and learning.
     Valerie Maxwell, Ph.D. writes "These optometrist utilize vision therapy lo force eye muscles to perform so that the child can follow a printed line without losing tracking, can read without one eye cutting out and shutting down in visual stress, and can complete visual closure in order to see the whole word". PAVE asserts that a complete vision testing would test for 20 subskills of vision and follow the SOI Visual Indicators:

  1. Ocular motility: eye movement skill, the ability to follow a line of print across a page.
  2. Binocularity: eye teaming skill, the perfect teaming of the two eyes to achieve accuracy of visual grasp on words.
  3. Visual-Motor: eye-hand coordination skill, the ability that is dependent on the use of eyes & hand together as paired. thinking tools and parallels the ability to visually interpret words and numbers.
  4. Visual Form Perception: visual comparison of shape, visual discriminations of size, texture, object, location, & color.
     Sometimes to achieve the SOI Visual Indicators it is necessary to prescribe special glasses called "prism" or "ambient" lens to assist with depth perception problems. Additionally bifocals or colored lens may be needed to handle the particular vision deficiency.
     PAVE and the OEP offer some early warning signs of vision problems. Several of these are: Note: Some Developmental optometrist work primarily with regular kids who are having difficulty reading and others have experience in working with challenged children who require prism or other special glasses.

     Research on visual perception issues was instigated by our MAGIC families. They began to notice behaviors in their children that were often dismissed as stubbornness or just "Down syndrome". Their children would not walk down stairs or walk on balance beams, they would cling to walls to step from carpet to a patterned floor, or heads would be tilted at odd angles or tilted backwards on the shoulders to watch TV. Some children would dramatically over react to moving cars in a parking lot or have to step down off a curb or refuse to step over the gap to get into an elevator. Many would experience frustration when challenged with close work or fine motor control work.
     MV IN Texas After taking Luke to five optometrist and Behavioral Optometrist, I finally discovered one who could accurately diagnose my son's vision problems. Out of one eye, Luke was seeing things very large and the other eye was seeing things very small. He was fitted with prism lenses to normalize his vision and impact the way his brain processes visual information. Both the speech and occupational therapist have noticed improvements in Luke with his glasses. His ability to attend to tasks has improved.
     AO in Cinti Anthony who is almost three, would have pretty typical behavior at home. When we would go out or attend therapy his behavior would change. An evaluation with a behavioral optometrist revealed that his eye development was at the level of a 9 month old and he was experiencing severe depth perception issues. Anthony has benefited with glasses and we do eye exercises to improve his vision. Anthony now does a lot more "looking" at his surroundings and it has helped his attention span.
     LW in Alabama Katelyn would always hold her head at an odd angle and when she would watch TV her head would rest back on the shoulders and she would look up at the TV. Testing with a traditional optometrist showed she was a little nearsighted. One of my doctors urged us to see a behavioral optometrist.
     Testing with the developmental optometrist revealed that Katelyn was very farsighted and had a depth perception problem. The doctor tried a variety of "prism lenses" on her. When she was fitted with the proper pair her head position became normal and she walked the balance beam, which she had never done before. Daily we practice our vision exercises.
     BA in Texas We think our son may have vision problems. When he comes from the carpeted family room into the kitchen with the black and white tile, he has to grab the wall and anchor himself before he can step into the kitchen. Going from the carport to the driveway, there is a one inch step. Our son has to sit down and scoot off the carport. He is just unable to take that single step.
     SM in Florida SM reports that her daughter was diagnosed with hypersensitive peripheral vision. She uses pin hole glasses and flashlight exercises to lessen the sensitivity.

     Featured speaker at the Shreveport conference was Ira T. Lott, M.D. He is Chairman of the Dept. of Pediatrics and Director of Child Neurology at the University of California, Irvine. Dr. Lott is researching the development of Alzheimer's disease (AD) in individuals with Down syndrome. Dr. Lott was awarded a $50,000 grant from the Down Syndrome Society to study AD in Down syndrome. The major points of Dr. Lott's presentation were:

     The Beta amyloid protein, winch is involved in the creation of "senile" plaques in Alzheimer's, is located on the 21st chromosome. Beta amyloid protein is scientifically documented to be overexpressed in Down Syndrome. The question we all have. "How can we protect our children's brain from this destructive metabolic process?" Dr. Lott offered no solutions.

     Copies of several abstracts on the protective effects of the herb Ginkgo Biloba on the brain and nervous system are on file at MAGIC. Ginkgo Biloba is among one of the most prescribe drugs in Europe. This herb is claimed to be effective in peripheral arterial disorders and in "cerebral insufficiency".
     Reviews of abstracts presented at the American Aging Association in October, 1996 are:

  1. How Free Radicals Attack the Brain
  2. How Glutathione Depletion Causes Brain Cell Death
  3. Antioxidant Diet Protects Brain and several others.
     National Geographic, June 1995 has an excellent article titled "Quiet Miracles of the Brain". The article explains different functions of the brain, ongoing research to study and map the brain and therapy and surgical options people have chosen.

     Please contact me if you know of anyone who has been through Auditory Integrative Training (AIT) or used SAMONAS sound therapy. I am very interested in your results. I have also spoken with one family who has used EEG Biofeedback. Also, if you or anyone you know has done additional metabolic testing of have tried glandulars, TMG or SAMe. I would like to hear your feedback.

     MAGIC's July conference will arrive soon. It is with much regret that I must relay that our speaker has experienced an unavoidable conflict of schedules & has regretfully cancelled. The conference still offers educational opportunities on thyroid & growth hormone disorders & many fun, family oriented activities. Hope to see you!

  Revised: April 23, 1999.