Blog For Down Syndrome

(text copied from Yahoo Group web site)
The Down Syndrome & Autistic Spectrum (ds-autism) listserv is a discussion list for families, parents, and professionals interested in this dual diagnosis.Topics include medical, educational, and family concerns in a free, and open forum
(Click here to go the Yahoo Group Site)
The list is a program of Creating Solutions (www.creating-solutions.info) and managed by volunteers: Joan Guthrie Medlen, Donna Duffey, and Mary Beth Pilewski Paul.

The list is the inauguarl service of The Down Syndrome & Autism Internet Information Center. For more information about the Center, visit: http://www.disabilitysolutions.org/ds-autism_center.htm

We read two stories this week that highlighted for us the positive messages of inclusion, good parenting, a caring community and supportive educational system.

The first article about a young lady with down syndrome from our neck of the woods, Allentown PA. The Morning Call web site ran an article about Briana Dunn who was the first child in the Council Rock School District with Down Syndrome to be main streamed. This is a great story to read about a successful young lady and a wonderfully supportive family.

The second article is about a young lady with Down Syndrome. She died in November of heart problems associated with Down syndrome. The article that appearred in the Commercialappealonline.com web site from Memphis highlights the remarkable life of this 25 year old self-advocate who accomplished so much in her short 25 years.

An article was published in the Journal of the American Medical Association (JAMA) this month concerning the incidence of abnormal sleep patterns and obstructive sleep apnea in children with Down Syndrome. Quoting from a press release;

“More than half of children with Down syndrome may have abnormal sleep patterns and obstructive sleep apnea syndrome, and parents may not be able to determine whether their children are among those with sleep difficulties, according to an article in the April issue of Archives of Otolaryngology – Head & Neck Surgery, one of the JAMA/Archives journals.”

This did’nt completely surprise me but the high incidence they found in the study I thought was unusual. There have been numerous studies done in previous years on this same subject and it has always been accepted that there is a higher incidence of OSA in the down sysndrome population. Our son who is 14 years old has snored since he was an infant and we have been concerned but he never seems to be in any distress while sleeping. If anything it has improved the older he has gotten as have the recurrent ear infections and bouts of croup.

I actually do have sleep apnea myself and use CPAP every night so I am familiar enough with the subject and the process you have to go through. It was a life saving diagnosis for me.

I would love to get a base line study done on my son but I can’t even begin to see him lying still in a sleep center with EEG leads, EKG leads, blood gas sensors all hooked up. In addition to his down sysndrome he has autisitc spectrum disorder and is very sensitive to touch and pressure (not mention strange people in strange surroundings). If anyone who is reading this has had the experience with their child please share you experience. My son did have a adenotonsillectomie when he was about 8 and that seemed to reduce his snoring quite a bit.

This article has prompted me to google the internet for more resources on this topic. Here are some links I thought were helpful.

Original article on JAMA web site - http://archotol.ama-assn.org/cgi/content/short/132/4/432

April 17 Press Release - http://www.eurekalert.org/pub_releases/2006-04/jaaj-asp041306.php

Obstructive Sleep Apnea and DS - http://www.ds-health.com/apnea.htm
Also has links to other references.

From the Riverbend web site - http://www.altonweb.com/cs/downsyndrome/index.htm?page=ferri.html

A interesting point of view about misdiagnosis of Alzheimers in adults with DS may actually be the effects of chronic sleep apnea. - http://www.neuro.jhmi.edu/BrainWaves/2004_Spring/DS.htm

American Family Physician - Excellent Article- http://www.aafp.org/afp/20040301/1147.html

Read a great article today at the DailyRecord.com website . What started out as a grassroots effort with 4 parents in one town in New Jersey is “now in demand statewide — for integrating children with special needs into their communities.”

“With persistence and creativity, these parents, all volunteers, have raised $180,000 since 2003 and created 32 recreation programs in Montville. Roughly 150 children with special needs, ages 3 to 18, from 27 area communities, have been given the chance to play sports, dabble in arts, go to the movies and have play dates with other children. And nearly 1,400 nondisabled children have been trained as mentors to work and play with their children.”

It’s great to come across these positive energy stories. Makes my day!