October 11, 2012

Route 95 10/11/12

So going to the Washington DC area just once this week wasn't enough...

James, Hannah and I hopped in the car after dinner and took another 2.5 hour drive north.   Our destination?  The National Institutes of Health.

If you've read much of this blog (even though I took a year-long sabbatical), you know that I/we believe in participating in research.  Hannah started her first research study when she was barely 3 days old.   It saved her life.   So we try to participate in every study that we're eligible.   We've done countless surveys as parents, the older kids have done questionnaires, Hannah's been poked, prodded, medicated, and measured in the name of science.  Down syndrome science.

This season's study is "Brain Imaging of Childhood Onset of Psychiatric Disorders, Endocrine Disorders and Healthy Controls".   The purpose of this study is to understand brain development during childhood and brain changes with aging.  They are looking for brain changes and development in healthy adults and children and in those with different developmental disorders.  There will be 6,000 subjects in this long term study!  Wow!  That's a lot of info!

Tomorrow we'll get checked in as an outpatient and Hannah will be poked and prodded and evaluated and tested (lots of cognitive testing--pencil/paper, computer testing, etc).  The appointment should last between 4-8 hours....

Then we go home.   Next Friday we come back up for a 45 minute MRI.  Hannah's never had one of those, so it should be interesting...

Now, don't think we're torturing Hannah.  She actually loves medical settings.  When she was little she was terrified of doctors and dentists.  We role played Doctor so much that for years she wanted to be a doctor when she grew up!  Hannah loves tests too.  We never test her at home.  She has not had any kind of therapy since she was 6 years old, so she likes to try to do all the things the researchers want her to do.    She doesn't mind getting blood drawn.  The only thing she's not fond of is an EKG.  She can't stand the electrode stickers.  When removing them it pulls her sensitive skin too much.  But she's compliant nonetheless.   Lots of years of "conditioning" as a child!   She's got a thirst for knowledge, so if we explain procedures in advance with factual information, she's on board.  

Just now, as she was brushing her teeth before bed she asked me if there would be a practice MRI tomorrow (yes, they have a "mock MRI" for practicing).  Clearly she's thinking about what we discussed a few weeks ago--and maybe she's slightly concerned since it's a new setting.  But she will go with the flow tomorrow--blood testing and all.

If you want to help our family members with Down syndrome, please consider participating in research.  It really can make a difference.
If you're interested in finding a research study in your area, take a peek at the NIH website or the listings on the NDSC site.

To learn more about Hannah's experience in this research, go here.


Unknown said...

You and Hannah are my heroes!

Anna said...

Can you share your thoughts on "down syndrome clinics" ? We adopted our daughter two years ago and have been seeking medical treatment locally. We do have a children's hospital. Someone has suggested we seek treatment at a Down syndrome clinic. I've done research and found one convenient for us. I was trying to explain to my husband why this would be a good thing. Any thoughts?(hoping this will help you form an insightful post for another of those 31 days!)

Jaime said...

Thanks for the info. I'd be interested in participating in a few research studies when my daughter is born, so I'll check out those links.