Lifeline for Parents of Diabetic Kids

Last weekend I had the pleasure of attending a unique event.  At least I think it was unique. Actually I’m kind of hoping it wasn’t — because the Pediatric Diabetes Symposium held at UC San Francisco on Saturday was nothing short of a lifeline for parents of diabetic kids.  I hope there are events like this one all over the country!

Teddy This free-of-charge program ran from 9am-3pm and featured a “Kids Kamp” daycare program so that parents could attend the morning talks uninterrupted.  The afternoon was a set of hands-on workshops touching on everything from “defeating diabetes burnout” to “how to be an advocate for your school-age child.”  Boxed lunch was free as well, and there was even a gluten-free option (!), plus a sheet breaking down the carb counts of every food item (!)  That brought a tear to my eye…

Anyway, the fabulous speakers included:

* Dr. Stephen Gitelman of UCSF – with an update on clinical trials for the prevention of Type 1 diabetes, and tactics for early intervention.  Among other things, we attendees learned that the anti-inflammatory effects of Omega 3 fatty acids are being studied as a potential contributor to preserving beta cell function.  Also, did you know that the TrialNet study is looking for adults up to age 45 to participate as well as children?  Learn more on that topic here.

* Dr. Darrell Wilson of Stanford – with an overview of new continuous glucose monitoring (CGM) technologies, which are unfortunately not FDA-approved for children yet, but numerous studies with kids are underway.  One interesting tidbit he mentioned regarding the “closed-loop system” is the problem of time lag in insulin delivery: if you have to wait for the CGM to detect the glucose in your system before insulin is released, you’ll always be behind the curve, of course.  One way to combat this is using “hybrid control,” which means administering a portion of the insulin proactively in advance (like we do now) and then letting the system catch the rest.  Fascinating…

* Dr. Susan Guzman – a soft-spoken clinical psychologist specializing in diabetes and heart disease.  She’s also a co-founder of the The Behavioral Diabetes Institute in San Diego, CA. She gave a highly encouraging talk on staying sane while striving for diabetes perfection.  Actually, what she said was “perfectionism is a guarantee for frustration,” and that we should all strive for “good-enough control.”  The key message was: “be ambitious yet realistic (because)… despite our best efforts, diabetes management is not an exact science.”  Amen!

* Author James Hirsch – who wrote that amazing book “Cheating Destiny.” He’s a Type 1 himself, along with his renowned-endocrinologist brother Dr. Irl Hirsch.  And James’ small son Garrett was diagnosed with Type 1 during the writing of his book as well.  I’ve heard him speak a few times now and find him extremely realistic and always entertaining. “You WILL have ups and downs,” he told parents.  “Take credit for the good days. And on the bad days, blame the disease and vow to make better decisions tomorrow.”  The way I understood it, that is part of his “therapeutic philosophy” to avoid the downward spiral of apathy.  Count me in.

* Author Laura Plunkett – who wrote “The Challenge of Childhood Diabetes,” a must-read for any parent in her situation. She’s a psychologist herself who’s changed her career and life focus since her son was diagnosed with diabetes.  Also very calming, Laura talks about the family dynamic, including food and exercise changes for everyone, because “focusing on insulin alone is not enough,” she says.  Check out her “Ten Small Changes that Can Make a Big Difference” article on DiabetesInControl.com.

* Advocate Lisa Shenson – a local mother here in the SF Bay Area who’s become a strong voice in supporting parents and speaking up for the rights of diabetics and people with celiac disease in school and elsewhere.  She’s an extremely likeable lady with a passion for the cause.  And she gets things done — the kind of person we ought to clone :)

On top of all this, there was mini-expo (OK, just a hallway with some tables) where vendors could meet-and-greet and inform.  I enjoyed learning about Dogs4Diabetics — detecting hypoglycemia in at-risk patients — and checking out some devices I hadn’t yet seen up close and personal. One ofAccucheck_plus those was the Accu-Check Compact Plus all-in-one glucose meter, which looks a bit like some Transformer you might use to beam up to planet Good Control.  But it’s kind of neat that the lancing device is stuck right on the side, and a test-strip drum is built in, so you don’t have to carry a lot of separate pieces.  Still, the drum is very specialized so it’s not compatible with “regular” test strips.

One heck of a day of learning in all.  And I so enjoyed seeing the families there together, laughing and sharing the diabetes experience in a positive way.  If my own children are ever diagnosed (bite your tongue!), at least I’ll know where to turn for the best support and info, close by and free of charge.

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4 Responses

  1. Jana
    Jana March 8, 2007 at 8:11 am | | Reply

    I was initially excited when Accu-Chek sent me a free compact a while ago. But then when I started using it, it broke down on the first day! The test strip drum went wacko and first was spitting out strip after strip and then a strip got stuck half-way out and I had to pry it out with a pair of needle-nose pliers. Ugh. I’m never using that thing again.

  2. Allison
    Allison March 8, 2007 at 8:27 am | | Reply

    This isn’t the only event for parents of diabetic kids. First, there’s the king of all parent events: the Children with Diabetes national and regional conferences. Massive. Fun for the whole family. There is also a seminar program in Portland for parents, and they cover a variety of topics. Dr. Bruce Buckingham was here a couple weeks ago for our annual research seminar and he said that he believed the Portland is the only city to have a program of this kind. You can visit the Children’s Diabetes Network at http://www.cdssn.org. There is even a day-long seminar at our local camp at the end of summer. I’m pretty sure Joslin has some programs for families, but I’m not sure about anywhere else. But your program seemed uniquely large which is great. Of course, CDN is a non-profit so it can only bring in people that it can afford through donations. You are lucky that your program had more financial support.

    Anyway, just wanted to tell you about CDN in case you were interested in finding out if there really were other places. Ciao!

  3. AmyT
    AmyT March 8, 2007 at 10:08 am | | Reply

    Thanks, Allison. Actually I know all about CWD but wasn’t sure that other universities and centers around the country offer this kind of thing. I’ll check out CDN, too.

  4. Carey
    Carey March 9, 2007 at 7:14 am | | Reply

    Thank you for sharing all of this valuable information.

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