|Down Syndrome with Growth Failure|
Linda Blevins, Division Director
The MAGIC Touch Spring 1997
Vol. 8, Issue 1, pp. 7-8
|Reprinted with the permission of The MAGIC Foundation|
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I would appreciate you pondering, some of these questions. I'll be speaking with you soon and I look forward to your feedback.
JORDAN AND THYROID
Next issue I will be discussing thyroid issues that we have seen in our son Jordan. Compensated and or subclinical hypothyroidism effects one out of 12 individuals with DS (Down Syndrome: Living and Learning in the Community, p. 243) and should be a concern for us as parents.
Several resources were helpful in researching the thyroid topic. First, the book Solved the Riddle of Illness by Stephen Langer was a real eye opener. Several sections sounded like they were written specifically about Trisomy 21.
The Barnes Foundation is an organization that supports research and provides information to individuals and physicians on the topic of thyroid testing and functioning. They can be reached at (203) 261-2101. Plus MAGIC'S own Congenital Hypothyroid division is a great source of information.
Dear MAGIC, When we first heard Jacob had Down Syndrome, we were okay with it but felt totally helpless. We wished we could do something to help him. Anything!
A week after Jacob was born, we were given information about some vitamins for Down syndrome. We were told of two companies plus a doctor who had vitamins for Trisomy 21.
We decided to put Jacob on these vitamins as soon as we could. Since Nutri-Chem didn't give out vitamins to children under three months, we decided to go with NuTriVene-D.
Jacob developed an allergic reaction to the enzyme formula from NuTriVene D so we immediately took him off of the product. He broke out in hives from head to toe.
At four months of age, We put Jacob on MSBPlus vitamins from Nutri-Chem. Within three days, we started noticing some changes. He wasn't constipated anymore. This was great since we've been giving him Baby Lax for a month and a half.
Within a week of being on the MSBPlus, we noticed he was more assertive. His muscle tone improved almost overnight it seemed. Jacob discovered splashing in his bath was fun as well as banging chains on a hard surface. Now he looks for things that will provide a cause and effect reaction. He even attempted to crawl.
One physical change we noticed, was that Jacob's forehead is now rounding out. His nose is starting to form a little bit of a bridge, but we know this will take some time.
Since Jacob has been on the MSBPlus. we ran out of them for about four or five days. In that amount of time we noticed he was regressing. He became passive and lazy again. When he started back up on the vitamins again everything improved.
Jacob has been to see an Endocrinologist at Scottish Rite Hospital. We wanted to double check on his thyroid test since it appeared abnormal. The doctor told us Jacob needed a series of HCG shots to help stimulate the hormone Testosterone, since his testes and genitalia were still in the neonatal stage. He has to have two shots a week for three weeks with a follow up visit to see if he has improved. The endocrinologist also found that at five months Jacob had already fallen off the growth chart. We are anxious to see if his growth changes while on the vitamins.
Now at five months of age, he is rolling over and bearing weight on his arms. Before we know it, he will be running all over the place. We really are blessed to have Jacob in our lives, but now we know we don't have to feel helpless because there is something we can do about it! TD, Georgia.
Dear TD, Thank you for your letter. It's great to hear of Jacob's improvements on the vitamins. Please keep us posted on how your son responds to the HCG injections. Neonatal genitalia is a characteristic found in many DS male infants. Yours is the first I have heard of being treated, I am sure your results will be of interest to other MAGIC members.
Dear MAGIC: My daughter, Julia, is two years old and was born a very healthy child with Down Syndrome. At the age of four weeks she developed her first ear infection, at eight weeks her second and it continued on a monthly basis. I put her on Dr. Warner's vitamins, HAP CAPS, and removed dairy from her diet hoping it would help. It did. She was able to stay clear of ear infections for long periods (3 months) and it saved her from tubes. Still she often had sinus infections and they kept turning into ear infections. It would then take two months of antibiotics to clear the infections. They were talking tubes again!
In a desperate attempt I went to Dr. Catellani at the Evanston Holistic Center in Evanston, Illinois. She is an M.D. but feels that Holistic medicine provides some of the answers modem medicine does not. She did a blood test on Julia to test for food allergies. The test is the ELISA-ACT, IGg4, 96 food allergy panel. The lab who supplied the test kit is National Bio Tech of Seattle. Washington, 1-800-846-6285.
Julia was tested for 96 food allergies. The test requires only one milliliter of blood and the lab measures the antibodies in the serum. It turned out that she was allergic to:
Dear SN, What a joy it must be to have Julia healthy. Your positive experience on allergy testing will benefit many other parents. Thank you for sharing.
On January 18th, in Cleveland, Ohio, parents sponsored a conference on Nutritional Therapy for the Treatment of Down Syndrome. Almost two hundred very interested parents and several interested physicians attended this conference. Parents traveled from Texas to Massachusetts and from Georgia to Wisconsin seeking information on the metabolic disturbances in their children. In quick summary:
Dr. Marie Peeters as Medical Director of NutriChem will be conducting a research study entitled "Evaluation into treatment of Down syndrome". The study is open to new MSBPlus users and will focus on biological, developmental and immune issues in children with Down syndrome. The study is also seeking participants who do not utilize vitamin supplements to act as a control group. If you are interested call Debbie Clements at (613) 820-9065 or E-mail at email@example.com.
TRISOMY 21 AND NIGHTLINE WITH TED KOPPEL
In December on the most rock solid of news programs, Nightline with Ted Koppel, aired a well researched and scientifically presented segment on the metabolic disturbances in DS. Highlighted was research from the University of Toronto showing that at birth, DS babies have brain weights and size considered in a normal range. Yet by 3 to 6 months, brain weight and size are reduced. Other pertinent research was detailed. Featured in the segment was Dixie Lawrence and her nutritionally treated daughter, Madison. The segment was titled "Mother's Mission" and may be ordered through ABC's videotape ($29.95) and transcript ($12.95) department at 1-800-913-3434.
CELIAC DISEASE AND DOWN SYNDROME
Celiac disease strikes DS individuals at a rate of 20% to 30% higher than the average population. Celiac disease can be a debilitating and even life threatening disease (see Dec 96 newsletter). These additional articles will be on file at MAGIC.
|Revised: April 27, 1999.|