Down Syndrome with Growth Failure  
Linda Blevins, Division Director
The MAGIC Touch • Winter 1996
Vol. 7, Issue 4, pp. 11-2
  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
E-Mail: mary@magicfoundation.org

FROM THE DIVISION DIRECTOR
School is back in fall swing and our girls are kicking and running in soccer. Jordan is loving his Montessori school and I am driving 500 miles a week hauling everyone to everything. Rumor has it Dole is trying to catch us to get the "soccer morn" vote.

Still, in all this hustle, there were medical issues for Jordan. First we took him to a pediatric ophthalmologist to have his eyes thoroughly examined. Blow me down and knock me over with a feather, the kid was blind. He was dramatically farsighted, with diopters of 5 and 6. How could we have missed this? He watched TV and read books, he never tripped or fell down and always got his glass to the counter. He knows his shapes and colors and was very good at matching games. The doctor said that when the vision is this poor, the muscles around the eye relax and the eyes look straight ahead. At that point the eyes appear "normal". By placing him in glasses now, over time his eyes and brain will adjust and his prescription will lessen.

At the optical shop, the optician had a pair of glasses that were close to Jordan's prescription. We put the glasses on him and he began running around looking at objects very intently. As a matter of fact he didn't want to take them off. It certainly made me want to cry. Now Jordan has a pair of tortoise shell wire rim glasses. They make him look quite scholarly. It is also interesting to note that it has impacted his speech in a positive manner. I guess now that he can see it, he can label it.

Periodically, Jordan has a checkup on his heart for a slight mummer. A year ago, Jordan had an abnormal EKG with a "spike". This spike "suggest a degree of right atrial enlargement and right ventricular hypertrophy". Dr. Plauth noted the huge size of Jordan's tonsils. When Jordan is ill, his tonsils become so large they touch his uvula and block his airway. This causes sleep apnea and the increased pressure around the heart. The cardiologist indicated the increased pressure would eventually lead to heart disease and recommended that the tissues be removed.

Surgery was performed by Dr. Wendell Todd (I highly recommend him) at Egelston Children's Hospital. Dr. Todd is an extremely cautious doctor. He is very careful about maintaining the blood supply to the tongue to minimize swelling and bruising. It also means his surgeries take a little longer because he is in and out of the mouth. In addition, he has never had a child's palate collapse. He wrote the book on the amount of adenoids to remove to prevent palate collapse. Prior to surgery, we consulted with the anesthesiologist to discuss the sensitivity to anesthesia that DS individuals experience.

Although Jordan's surgery was painful, he healed remarkably quickly. Surgery was on Friday, the scabs fell off on Monday and Tuesday and on Friday he was eating his favorite meal, refried beans on taco chips. I am sure growth hormone and his vitamins promoted his rapid healing. Once again we saw a jump in speech. There are so many neural connections and nerve centers that run by the tonsils and adenoids, I can't help but wonder if any of those systems had been affected by the oversized tissues. It is interesting to note that Jordan's tonsils land adenoids were not infected, they were just enormous!

FEEDBACK ON GROWTH HORMONE
LB in Atlanta reports that everyone wants to know where Zachary got his long, long legs. LB just smiles and says Growth Hormone.

BG in Cleveland had just taken Sarah to the doctors for her two-year-old check-up. Sarah's physician said "Sarah is the best looking and healthiest DS in our practice". So convinced is the physician that alternative treatment has been successful with Sarah that she has stated that she will run any kind of metabolic test or do whatever necessary to keep her on a upward path.

KS in Texas, while picking Alex up from pre-school, was stopped by one of the other mothers. She wanted to check that Alex really had DS. When KS confirmed this, the mothers response was "Gee, he must not have it very badly".

MS in Kentucky says. For the MAGIC Foundation: I closed my eyes at Laura's ballet / tumbling class so I could clear my mind and try to gel a fresh / neutral vision of all the dancers. In the past Laura would have been the weaker of the girls, the shortest one, the one struggling to catch up with the parade. When I opened my eyes, she looked so strong next to the other 6-year-olds. Her leg muscles were shapely, her little bottom popping out. She was keeping up and so proud. She did not stand out "as the girl with something wrong". Finally, teachers and coaches have dropped the term "Floppy" and "Rag Doll" to describe our Laura. We spent a world of time and money on physical therapy in 4 years. I almost believe I could have accomplished the strength and tone with growth hormone alone. We are so happy to see her keeping up with her peers in a way you don't see often in kids with Down syndrome. Her learning experiences have not been as delayed because she's right there with the fittest; Running, Hopping, Tumbling. A normal appearance and strength have been the gift of growth hormone. Yes, it comes with an incredible price tag. We had Laura tested by our own request (her doctor just expected her to be slow in every way), the endocrinologist felt she deserved better. She tested GH deficient in 1992 and has been treated and growing since. Oh! The price tag, Laura was "uninsurable" (DS). But (hanks to The Growth Hormone Companies Uninsured Patients Program, Laura was able to receive the GH for what little $ we could pay until she was insured. Now we pay 20% after meeting our deductible. There is no therapy that we have tried that has had such positive and dramatic effect on Laura. When she was born I prayed with all my heart that she could be healed. The Growth Hormone gets her very close. For her sake, we have no regrets.
I hope everyone has enjoyed the FEEDBACK section!!!

DENTAL APPLIANCE
A mother m Baltimore wants to know if anyone has used a dental appliance to widen and lower the palate. This device is supposed to make speech easier and articulation clearer. Apparently it has been used in Germany. Call me at (706) 638-6700 if you have any information.

FOR YOUR INFORMATION
There is a class of optometrist call BEHAVIORAL OPTOMETRIST. Behavioral optometrists believe that "vision is learned and therefore can be trained and enhanced". The Optometric Extension Program (OEP) offers a wide range of books on vision problems, reversal errors, right brain/left brain processing and visions impact on learning and behavior. They can provide a referral list of associates. For more information:

Optometric Extension Program
1921 E. Carnegie Ave. Suite 3-L
Santa Ana, CA 92705-5501
(714) 250-8070
SPECIAL NUTRITIONAL NEEDS IN DOWN SYNDROME
Dr. Lord from MetaMetrix was one of our featured speakers at the MAGIC conference. Dr. Lord has extensive experience in the biochemical field from the University of Texas to Doctors Data Labs to the National Institutes of Health. As medical laboratory director at MetaMetrix he has had the opportunity to review hundreds of DS metabolic test results. He presented these results at the MAGIC conference.

"The physical and mental characteristics of Down syndrome are caused by the generation of increased amounts of enzymes due to the extra chromosome. Enzymes impact the metabolic flow of the cells, often with destruction or consumption of the coenzyme factors that are derived from vitamins and minerals. This is not to say that the disorder is caused by or cured by 'vitamins and minerals. It is to explain why nutritional intervention is such a logical approach to lessening the impact of the problem caused by the extra DNA."

"In Down syndrome, the most clearly established general nutritional impact is the antioxidants (esp. vitamin E) which are consumed by the increased production of the enzyme SOD. Other patterns are sure to emerge from subsets of individuals with Trisomy 21. Based on the rationale that the extra genes effect nutritional needs, comprehensive nutritional-metabolic testing has been done. Many favorable reports from such cases that have used the suggested nutrient programs indicate that such testing is worthwhile."

Dr. Lords analysis of the testing reveals that DS are under severe oxidative stress with dramatically elevated lipid peroxides and depleted levels of the antioxidant vitamin A, E, C, and beta-carotene. The result is increased damage to the fatty acids in cell membranes. Further testing highlights shortages in certain amino acids, tryptophan, tyrosine, valine, methionine and six others. Amino acids are the building blocks of the body and an ample supply is required to build healthy bodies. Downs cases usually show multiple patterns of inadequate specific B vitamins and other cofactors.

Another pattern has emerged. Testing from MetaMetrix shows low levels of essential fatty acids, particularly DPA and DHA, found in fish oils. These key fatty acids are needed to build a healthy nervous system. Yes Virginia, good fats should be in your diet.

Thank you Dr. Lord for your incisive analysis. The testing that MetaMetrix provides has been invaluable not only to us personally, but to many DS patients. Dr. Lord's charts and presentation are on file at the MAGIC office.

CELIAC DISEASE IN DOWN SYNDROME
The article Big Mysteries: New Clues from Family Trees is written by Dr. Chris Reading of Sydney, Australia, and it discusses the high incidence of celiac disease in Down syndrome that he has treated in his medical practice. The article was published in 1988.

Celiac disease is an intestinal disorder that stems from grain allergies, or more precisely, allergies to the gluten and alpha gliadin components, proteins found in wheat, rye and barley. Symptoms of celiac disease include nausea, diarrhea, abdominal swelling, large and frequently foul smelling stools, weight loss, anemia, skin rash and joint or bone pain.

The intestinal lining becomes damaged and defective in this disorder, and its ability to absorb vital nutrients is impaired. Dr. Reading says "Those allergies cause malabsorption, and hence a massive deficiency of vitamins B1, B3, B12, folic acid and the mineral zinc. A serious deficiency in any one of those. if undiagnosed or untreated, can cause dementia". Dr. Reading continues "The allergies also cause malabsorption of essential minerals and trace elements such as calcium, magnesium, iron and manganese. In addition, they allow the absorption of toxic metals such as aluminum and higher than normal concentrations of aluminum in the brain is one of the dementia causing features of Alzheimer's Disease".

Dr. Reading observed indications of celiac disease in 18 out of 18 Down syndrome children. Each of these patients had a least one parent with an extended family tree of autoimmune diseases of leukemia, lymphoma, Alzheimer's disease, arthritis, thyroid disorders and cancers. From Dr. Reading's experience, by placing these children on gluten free diets and supplementing with the relevant minerals and nutrients, most of the 18 children have made rapid and measurable improvements in height, weight, head circumference, mental and motor development and general health. This article will be on file at the MAGIC office.

BOOK REVIEW
Dancing in the Rain is a collection of "stories of exceptional progress by parents of children with special needs". The book focuses a wide range of disorders from attention deficit, dyslexia, hyperlexia, communication delay; pervasive developmental delay, central auditory processing disorder, fetal alcohol syndrome and autism and strategies that worked in twenty-two cases. Revealing parent's struggles and their alternative therapy choices to treat and in some cases ameliorate their child's behavior and diagnosis. Common alternative strategies range from auditory integrative training to nutritional options to behavioral optometry. Edited by Annabel Stehli, mother of a recover autistic child, this publication offers unique perspectives to questing parents. Available from the Georgianna Organization (203) 454-1221.

THANK YOU
I would like to thank our mother in Michigan for sending the article on celiac disease. Keep those articles and information coming!!!!

TRISOMY 21
Dixie Lawrence Tafoya continues to travel and speak on nutritional deficiencies and Down Syndrome. For her schedule you may call Trisomy 21 (504) 769-8747 or Fax (504) 761-8987. Keep your eyes peeled for a Date Line segment on this topic.

REMINDERS
Fill out those networking forms.
Share the MAGIC newsletter with a friend.

STORIES, STORIES, STORIES
Come on ladies, send your personal stories. It can be a paragraph or a saga. Once you get started it's very easy and amazingly therapeutic. Besides, I want to hear all about your beautiful children!

Happy Holidays to all!

 
  Revised: February 21, 1999.