On Tuesday there was a Congressional briefing on Down syndrome research on Capitol Hill. I had wanted to listen to it streamed live, but due to some technical difficulties (not to mention the fact that I was too busy at work to even breathe), it was unavailable. I got the link to the video today, and must say, it was an excellent use of an hour and a half of my time. I learned an awful lot, and feel like there is just so much to look forward to in the lives of our children and, frankly, in the lives of everyone, with or without Down syndrome. There were some very noteworthy speakers, whose names many of you may have heard of, including Dr. William Mobley, (UC San Diego Down Syndrome Center for Research & Treatment), Dr. Roger Reeves (Johns Hopkins University), Dr. Sally Shott (Cincinnati Children's Hospital Medical Center), and Madeleine Will (National Down Syndrome Society).
Among the things I learned (some of which I had heard before, but never in quite as much detail, more fully fleshing out the concepts for me) were how research into some of the medical issues associated with Down syndrome will help researchers to find cures for the whole population, not just those with Ds. How certain cancers are notably missing in most people with Down syndrome, while they will occur with alarming frequency in the general population, and how research on "trisomic" vs. "typical" mice has tied that lesser incidence to the presence of one particular gene. (cool, huh?) How obstructive sleep apnea (OSA) really occurs (the MRI images shown were astounding!), and with what frequency it occurs in people with Ds.
I want to come clean and be honest here on that last point...I was about to publish a blog post about how I don't believe that all people with Down syndrome necessarily have to have a sleep study, and since Samantha has absolutely no symptoms we aren't pursuing it - well, I was set straight today. Did you know that by age 4, 60% of children with Down syndrome have OSA? And did you know that by age 9, that percentage jumps to 80%? And that over the age of 12 (I think that's what they said, but without going back to the video I can't verify the exact age), that number is nearly 100%??? Well, I sure didn't. Looks like we'll be getting Sammi a baseline study sometime soon... 100%? Really? I swear, this kid sleeps like a log, no snoring, no moving, no nothing. I had no idea that it could/would change over time. Crap. It's like the thyroid thing - not if they'll get a thyroid issue, but when... (yeah, yeah, I know about 60% of you out there reading this are saying I told you so... I acknowledge my bad.)
I'm just glad I never published that post...yeesh.
There were so many other things I learned from that briefing, but can't recall right now as I type.
Please have a look, and I hope you all get as much out of it as I did.
3 comments:
Lil G had a sleep study done the Fall before we adopted her and it found she didnt go into REM stage of sleep. I find that disturbing but did a little research and wonder if maybe her brain wasnt being stimulated enough for her to sleep well at night? She sleeps very hard and often. From 9pm to 8am. Then naps from 2:30-5:00. When we arrived home from Ecuador it was 1-5 and same night schedule. I did other research at the time and found this was common in adoptees, a manifestation of stress. This was one of the factors we took into consideration when deciding if she would start Kindergarten this Fall. (thanks for the link and incredible post- per usual)
I'm glad they were able to get a video up so we can watch it now; although when I'm going to find an hour and a half to watch it I don't know! The other day I posted a video of an interview with Dr Mobley; have you seen it yet? Very interesting! And sounds like some of the stuff you were saying - that research on Ds isn't just about Ds; it can't affect the greater population, for instance with Alzheimer's.
PS ... Kayla hasn't had a sleep study either. I'm dreading it.
watching it now :) thanks i guess w will be having a sleep test too
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