As most scientific efforts focus on finding a reliable prenatal test to screen for Down syndrome, one researcher is instead looking to use medication to treat the disorder.
Alberto Costa knew little about Down syndrome when his daughter Tyche was born with the condition 16 years ago. But he quickly focused his expertise as a neuroscientist on better understanding the disability.
Today, Costa is preparing to release preliminary results of a four-month trial of an Alzheimer’s drug called memantine that he tested on 40 young adults with Down syndrome. Half received the medication — which Costa’s studies on mice indicate could help those with the developmental disorder boost their memory skills and become smarter — and half took a placebo.
Parents of those who participated in the study are largely optimistic about the treatment possibilities. One mother says that her daughter started doing puzzles in the newspaper and became more expressive, using full sentences to explain a dream she had.
But not everyone is pleased with Costa’s approach. Some families are concerned that medicating people with Down syndrome could mean altering a person’s personality or identity. In fact, a Canadian survey recently found that 27 percent of parents would decline a “cure” for their child’s Down syndrome, reports The New York Times. To read more click here.
Absolutely wonderful!!! May Dr. Costa’s fantastic work continue……….
I don’t think these drugs are cures, nor do they change your child into some unrecognizable person. We have had our daughter on anti Alzheimer drugs since infancy. Last year, at age 10, we put her on Aricept. We did notice a change in her. Speech was easier for her. Her cognitive abilities increased. But never did I feel like I lost my little girl. Life simply got a little easier for her and I don’t think that is wrong. Being unable to communicate is one of the most frustrating problems our daughter faces. I will try this drug also if I think it will help her more fully integrate into society.
I think the big fear is that drug experimentation on our children might cause them to have other health problems or even make things worse. My own daughter with DS is 21 now and I remember attending seminars by genetics researchers back when she was a baby. We had great hope that the medical researchers would be able to offer her something when she was still very young.
Yet now I understand why so many parents said they wouldn’t take a cure if it were available. If a “cure” was given to someone who has grown up with DS and their formative years are behind them, what would it accomplish after the brain has fully developed? Even if this cure resulted in a full Flowers-for-Algernon reversal, with all cognitive ability restored what kind of life would be llllllllllllllllllllllllllllllllllaqe
I doubt if anyone could cure Downs but if a child’s IQ could be raised even by 10 points it could help them be a more functional and independent person who would be less frustrated and more able to learn.
It would help those who are not pleased with Dr. Costa’s approach to read more information about the study. As the parent of an adult daughter who participated in this study, I can tell you first-hand that Dr. Costa certainly does not promise that this will be a “cure” for Down syndrome. The aim of the study is to hopefully be able to increase memory and cognitive ability. Once we met with Dr. Costa and he graciously answered our questions, we let our daughter have her say in the decision to participate or not (since this is her life)! She told us, “Yes, I want to remember more stuff!! And yes, I want to be able to learn better! ” Since it is a double-blind, placebo-controlled study, we do not know if our daughter was given the drug or placebo. My husand and I both made it a point to keep open minded about changes in her abilities during the study so to not be “fooled” by a placebo affect. While she was taking the drug/placebo she had absolutely no side effects. After she was done taking her pills, my husband and I shared our thoughts with each other about what we saw or didn’t see in her memory or ability level during the study. We both saw some pretty interesting changes in her. She seemed to be able to do abstract thinking,she understood and was able to follow more complex directions, and began using more complex sentences. At the same time, we saw NO changes in who she was (personality, attitude, sense of humor, etc). She stll had DS, but if the changes we saw were consistent if would greatly increase her quality of life and ability to advocate for herself.