JOIN US FOR OUR JANUARY WEBINAR Dr. H. Craig Heller, Stanford University
Tuesday, January 29, 10 AM PT / 1 PM ET
What can we learn about Down syndrome by studying the neural mechanisms of sleep? Plenty, according to H. Craig Heller, Ph.D., co-director of Stanford's Down Syndrome Research Center. Dr. Heller, an expert in the area of sleep and a DSRTF grant recipient, joins us for our January webinar to discuss the roles that sleep and circadian rhythm may play in the cognitive impairment that occurs in people with DS.
Register now for this free one-hour presentation, then join us on Tuesday, January 29 at 10 AM PT / 1 PM ET to learn what research tells us about the influence of sleep and circadian rhythm on learning, memory, and attention — and what that may suggest for the future of improved cognition.
We look forward to seeing you there.
The DSRTF Team
Showing posts with label trisomy. Show all posts
Showing posts with label trisomy. Show all posts
Saturday, January 26, 2013
Webinar - Sleep & Down Syndrome from Down Syndrome Research Center at Stanford Univeristy
Saturday, March 10, 2012
The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome
Many questions about use of ginko, prozac, methylphenidate for DS. Can these agents help individuals? Sure. Medications can help for certain co-morbidities. But, it seems to be a big leap to say that all children with DS should be on a
a "cocktail". JR
The use of Ginkgo, Prozac and Focalin as a "treatment" for Down syndrome
A combination of drugs recommended for depression and attention deficit and hyperactivity disorder is being widely promoted as a "treatment" for Down syndrome. There is no scientific support for the routine use of this protocol by people who have Down syndrome. It is important that families and healthcare professionals are aware of the lack of evidence for safety and benefits from use of this protocol.
Introduction
Other versions
We are a group of healthcare professionals, scientists and support organizations who care for and about people with Down syndrome. We wish to provide families with information about a proposed "treatment" for Down syndrome. We recognize that all parents wish to improve the lives of their children with Down syndrome and are interested in treatments, therapies and interventions that can help. We respect these wishes. At the same time, we are concerned that these "treatments" are potentially dangerous.
We are all aware of the advances that have been made in the basic science of memory and cognition in animal models of Down syndrome and are hopeful that these studies may lead to new ways to improve the lives of people who live with the condition.
Physicians and biomedical scientists evaluate potential interventions on the basis of safety and benefits to patients. As we describe below, the "treatments" that the Changing Minds Foundation recommends have not passed either test: there is no information whether these compounds are safe for children, especially young children. Furthermore, there is no evidence to support the claims for benefits that have been made.
Because we care about your children, we strongly urge families to consider this information when considering the claims for this "treatment".
The protocol
An organization called the Changing Minds Foundation is promoting a "new treatment for Down syndrome" that leads to "life changing" results. The "treatment" includes regular doses of Fluoxetine (Prozac), Dexmethylphenidate (Focalin XR) and Ginkgo biloba, Phosphatidylcholine, ‘Body Bio Balanced Oil’ and folinic acid. Some of these substances are associated with potential harmful side-effects. Some of these side-effects are of particular concern for people with Down syndrome and younger children.
Fluoxetine (Prozac) is used to treat depression, obsessive-compulsive disorder, bulimia nervosa and panic disorder. Dexmethylphenidate (Focalin XR) is used for the treatment of attention deficit and hyperactivity disorder (ADHD). Their use should be initiated and monitored by an appropriately qualified physician and should be limited to applications and treatments formally reviewed and approved by appropriate governmental and medical drug regulatory agencies.
Evidence of effects and safety
There is no scientific evidence to support the use of any of this protocol with people with Down syndrome of any age in order to improve memory or any other aspect of cognition. Nor is there any evidence that this protocol is safe for routine use with people who have Down syndrome.
The few studies referenced in support of this protocol are studies of mice. These mice have been engineered to carry extra copies of some genes similar to genes found on human chromosome 21. (People who have Down syndrome have an additional copy of this chromosome). These studies may or may not be good indicators of aspects of memory and learning for people who have Down syndrome. Studies in mice alone are not sufficient to support use of this (or any) protocol in children or adults with Down syndrome.
The Changing Minds Foundation promotional videos do not prove the claims of benefit from the protocol. While the people shown are clearly doing well, none of the individuals shown are functioning beyond the wide range seen in others with the syndrome. Claimed changes following ‘treatment’ could be the result of many factors. Only a controlled trial can give clear evidence of treatment effects.
Scientific progress
Scientific research has improved our understanding of Down syndrome considerably over the past 30 years. This has led to the better healthcare and education received by many people with Down syndrome today. Many scientists and organizations continue to work to improve our knowledge and understanding of effective ways to improve quality of life for people who live with Down syndrome.
Although the pace of further progress is often slow and this can be frustrating, only careful research and rigorous controlled trials can provide the evidence necessary to demonstrate that a therapy is useful and safe.
Further information
Ginkgo
Although bilobalide, a component of Ginkgo Biloba, has been shown to be a GABA antagonist, the activity has been tested only in isolated cells and in only one subtype of GABA receptors. No controlled studies have been done in animals or humans to establish safe doses, or to prove the claimed benefits.
Fluoxetine (Prozac)
The action of fluoxetine on the growth of new nerve cells seen in one part of the brain of Ts65Dn mice has not been replicated in humans. Published case reports suggest that medications like Prozac used in pregnancy can harm the fetus. The potential impact on developing minds of babies and young children is unknown. A general, or uncontrolled, increase in nerve cell growth is not necessarily a good thing, especially over long periods of time.
Dexmethylphenidate (Focalin XR)
The use of stimulant medication should be carefully considered for children with unusual heart structures, which includes about half of children with Down syndrome. Again, use is not recommended for babies or very young children.
Folinic acid
Folinic acid supplementation has been shown to have no significant effects for infants and children with Down syndrome on a range of developmental measures.
- http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-folate.html
- http://www.bmj.com/cgi/content/full/336/7644/594
‘Off label’ use
Families and healthcare professionals should understand that use of the protocol at this time is essentially experimental, with none of the benefits of a controlled trial. Monitoring for adverse effects would be the responsibility of the prescribing physician, with no one collecting that information to determine real risks. Similarly, positive effects would not be collected in a credible way that could be used by healthcare professionals to gauge the value of the treatments.
While there is no current evidence of the treatment's effectiveness for people with Down syndrome, there are significant risks of harm.
This statement is endorsed by the following scientists and clinicians:
Sunday, January 29, 2012
Trisomy 18 - What Is Trisomy 18?
With Rick and Karen Santorum's daughter hospitalized, I have had questions about trisomy 18. I hope Bella returns to health and gets home soon. JR
What Is Trisomy 18?
Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a chromosomal defect. It occurs in about 1 out of every 3000 live births. The numbers increase significantly when early pregnancy losses are factored in that occur in the 2nd and 3rd trimesters of pregnancy.
Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening in the early months and years of life. 50% of babies who are carried to term will be stillborn, with baby boys having higher stillbirth rate than baby girls.
At birth, intensive care admissions in Neonatal units are most common for infants with Trisomy 18. Again, baby boys will experience higher mortality rates in this neonatal period than baby girls, although those with higher birth weights do better across all categories.
Some children will be able to be discharged from the hospital with home nursing support for their families. And although less than 10 percent survive to their first birthdays, some children with Trisomy 18 can enjoy many years of life with their families, reaching milestones and being involved with their community. A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independently without assisted caregiving.
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