April 1997 Issue

This April 1997 issue is an invitation for our next meeting, on Friday, April 25, at 6:30 pm. Dr. Loretta Ryan will give an informal talk on Down syndrome from the dual perspective as a parent and Pediatrician. We will be serving Mexican food and the meeting will take place at our apartment.
Sooner or later we need to give our group a name, I propose a very long and winding one: Riverbend Down Syndrome Parent Support Group. We have added 10 Riverbend families to our mailing list and The William M. BeDell Achievement and Resource Center is funding the newsletter postage. Altonweb has agreed to host a home page free of charge for our group.

STARnet Region IV Workshops
Every Day is a New Journey
Saturday, April 26, 1997
Holiday Inn, Collinsville
9:00 - 3:30
Features workshops on, among others, Down Syndrome, stress management for families, effective IEP participation, grandparent issues, parent involvement (including a special session for Dads only), and accessing resources.

Explore the Possibilities, Keynote Speaker: John Foppe
Saturday, May 17, 1997
Holiday Inn, Mt. Vernon
9:00 - 3:30
Co-sponsored by four Centers for Independent Living in southern Illinois and will provide an opportunity for participants to meet/interact with adults with disabilities. Missy Kichline recommends this conference.

Registration for either event is $5.00, which includes continental breakfast and lunch. For more information on either conference call Sharon Gage at (618) 397-8930.

News Clippings
The path towards approval of drugs for other diseases, like Alzheimer's, can take years. As one cynic and AIDS journalist, Elinor Bukkett, says, "AIDS patients scream louder than the elderly." A Special Report: Dr. David Ho & The Lazarus Equation, Rolling Stone, March 6, 1997, p. 58.

Jaco Van Dormael, 40, enjoyed working with the mentally disabled 15 years ago on a short film about the Special Olympics. So the Belgian director cast 16 actors with Down's syndrome and other mental disabilities in his latest movie, The Eighth Day. Belgium's entry in the Oscar for Best Foreign Film, it opened last week in the U.S. Star With Down's Syndrome Shines in New Film, Parade Magazine, March 2, 1997, p. 10.

Does chicken soup [...] really help to cure a cold? ... Another researcher has theorized that this effect is partly due to the amino acid cysteine, which is found in chicken skin and feathers and which he postulates is released from the skin when the chicken soup is heated. Cysteine is chemically very similar to the drug acetylcysteine, a mucus-loosening agent commonly prescribed for patients with bronchitis and other respiratory disorders. It is also an antioxidant, and may have a protective effect on the delicate tissues of the lungs. The March Almanac, The Atlantic Monthly, March 1997, p. 14.

Shortly after Margaret was born, Sophia began to notice the child was not developing at the same pace of her other children [...] The Danielses boarded a train with little Margaret to Chicago to seek advice of a specialist. "I didn't know anything about Down's syndrome when Margaret was born," explained Sophia. "So after a few days we visited the hospital filled with Down's syndrome children in the big city." I talked to the doctors there about it, and they suggested we put her in a home with others like her. But we decided not to. We wanted to take care of her." Sophia said that after she told one doctor that they lived in a farm, he conceded that the environment might be a good place for Margaret after all. The article is accompanied with a photograph with the following caption: Sophia Daniels, right, 93, and her 54-year-old daughter, Margaret, share chores and companionship at their farm in Weyerhaeuser, Wis. Margaret, who has Down's syndrome, has always lived with her mother on the farm. Mother Keeps Young Caring For Down's Syndrome Daughter, Mary Caton-Rosser, St. Louis Review, January 31, 1997, p. 9.

Down Syndrome Quarterly
Denison University, Granville, OH 43023
Subscriptions $24/year (4 issues)

Play Pals
A developmental program for children ages 3 months to 4 years and their parents. Activities are provided that enhance the developmental and visual skills of children, as well as their self-confidence and social play. Coordinated through Saint Anthony's Occupational Therapy department, 463-5340.

Vitamins and Down Syndrome
From the Winter 1997 Edition, Volume 3, Number 1, of "Connections", reprinted with the kind permission of:

Michael L. Begleiter, M.S., C.G.C.
Senior Genetic Counselor
The Children's Mercy Hospital
2401 Gillham Road
Kansas City, MO 64108
(816) 234-3290, Fax: (816) 346-1378
About two years ago, there was a flurry of interest in the use of Piracetam, multi-vitamin supplements and amino acid supplements for children with Down syndrome. At that time we cautioned against the use of Piracetam since there have been no studies regarding the use or safety of this drug in children or adults with Down syndrome. Vitamins are generally safe to use with the exception of the fat soluble vitamins (A, D and E) which when given in very large doses can be toxic. Amino acid therapy merely supplies the substances present in protein.
In the last few months there has been renewed interest in the use of vitamin therapy for children and infants with Down syndrome. The proponents of this therapy have stated that the vitamin/amino acid/piracetam therapy needs to be started as soon as possible after birth. They believe that children with Down syndrome are born with normal brains and that there is a degenerative process which starts shortly after birth. This is not correct. All individuals with Down syndrome are born with changes in their brains which were present from very early fetal life. Although we do not understand why these changes occur, they have been present in the youngest fetuses which have been available for study.
The recommendation for the use of multivitamin supplements is based on a study which was published in 1981. Dr. Ruth Harrell and her colleagues (Proc. Natl. Acad. Sci. 78:574-578. 1981) administered high doses of vitamins to 16 children with mental retardation (four of these children had Down syndrome). They found that three of the four children with Down syndrome gained 10 to 25 IQ points. The study was conducted over a four month period and a number of scientists have pointed out that the design of the study was flawed. Many researchers have tried to duplicate Dr. Harrell's findings. All have been unable to show any changes in IQ, vision, visual-motor integration, school achievement, speech and language, neuromotor function, appearance, growth, or health in children with Down syndrome who have received multi-vitamin supplementation. We and others conclude from these studies that large doses of vitamins do not significantly change any aspect of growth and development of children with Down syndrome.
For those of you who may be interested, the following is a list of the references for the studies which were unable to show a benefit from the use of vitamin supplementation for children with Down syndrome.
Am J Ment Defic 88:214-217. 1983
Pediatrics 72:707-713. 1983
J Pediatr 105:228-234. 1984
J Ment Defic Res 29:233-240. 1985
J Nutr Sci Vitaminol 35:181-192. 1989
Except Child 55:336-341. 1989
Dev Med Child Neurol 31:532-537. 1989
Web Wanderings
[URL removed]
Reprinted with the kind permission of: Doug Anderson
Children's Medical Center of Dallas
(214) 640-7255
June 24, 1996 FAXnotes - A Biweekly Update for the Physician Community.
MEDICAL UPDATE. Management of Down syndrome - Update on Piracetam and nutritional supplements.
Following national publicity on the Day One television program, there has been a flurry of interest concerning the drug Piracetam and nutritional supplements in treating children with Down syndrome. The Day One program focused on a mother who found that a nutritional supplement called MSB, when combined with Piracetam, produced improved cognitive function and appearance in her daughter. Recent experience with families in our Down syndrome clinic indicates that as many as 25% are administering these supplements to their children.
Piracetam is a member of the nootropic drug class. Nootropic drugs have been used extensively in Europe to improve alertness or for disorders such as Alzheimer's disease and dementia. Nootropil™ can reverse amnesia induced by electroconvulsive or scopolamine therapy, but their precise mode of action is still unclear. Dosages of 8g per day have been tolerated without side effects in adults.
Piracetam is not approved by the FDA for U.S. use. There has been little experience in children and none in children with Down syndrome. Parents usually obtain the drug from Mexico, where it is available over the counter as "Nootropil™" (cost is about $7 for 30 800mg tablets). No side effects have been reported, but there are concerns about the purity and dosage accuracy of drugs manufactured without FDA standards. As of now, there is no proven efficacy of Piracetam in Down syndrome or in other conditions with learning differences.
MSB stands for metabolic supplement basic, with the Plus added to indicate it has been formulated for children with Down syndrome. MSBPlus is a mixture of amino acids, vitamins and minerals available from Nutri-Chem in Canada. Cost is reported to be about $30 per month, but becomes much more expensive if serum/urine metabolic profiles are obtained.
There is a long history of alternative treatments proposed for Down syndrome, but no controlled studies by reputable medical centers have demonstrated a requirement for nutritional supplements in Down syndrome beyond those recommended for all children. For more information, call Dr. Golder Wilson of the genetics and metabolism service at Children's at (214) 648-8996.

Father's Journal
My Son Will Roll His R's
We held an oxygen mask to Emmanuel, when he was born, so we could cuddle him and I left my wife behind to follow Emmanuel to Barnes' Special Care Nursery, for this limp body was mine and no one was going to switch him. I was told that Emmanuel was to be transferred to the Critical Neonatal Care Unit to stabilize him. I latter read the report of that first night and the kind nurses interpreted my shock to a language barrier. How could the nurses hear my accent, since I was crying the tears that my weak and ill newborn could not?
The admirable nurses at the Special Care Nursery would practice their high school Spanish on Emmanuel. We would resolve their language disputes as to the accepted Spanish translation of the color brown, for they wanted to be sure that Emmanuel spoke correct Spanish. Our favorite nurse would practice the American Pledge of Allegiance in Spanish, irrefutable proof that the reconquista is soon to come.
Unlike other sensible fathers who used rocking chairs, once I learned how to disconnect Emmanuel from all his monitors, I would pace the Special Care Nursery with my son and sing a bedtime lullaby in Spanish. Lullaby in Spanish is arrullo, and my arrullo had lots of double r's to soothe my baby to sleep. Finally after many days, a nurse got the courage to confide that their worse nightmare was dropping a baby and my wanderings made them extremely nervous.

The Rain Stick
My son, Emmanuel, does not care for rattles, but true to his south of the border heritage, follows our 12-inch rain stick avidly. He will follow the spiral flow of seashells, which imitates the serene sound of rain. So when the therapist came over with her little bell, we were doomed, and if Emmanuel could have, he would have covered his ears to the reverberating sound. This story does have a moral, but for the time being, I keep playing with Emmanuel, who is no longer fazed with his father's behind the back hand maneuvers.