Update October 2015

We've been living overseas since about the time this blog petered out. There are lots of funny Mo-and-Curly-abroad stories to share -- I'm exploring the best way to do that.

Thanks for tuning in!

Friday, April 16, 2010

The benefits of opening your trap

Sometimes it's best to shut your trap. I know I've inserted my foot in my mouth more times than I care to remember.

But lately - and specifically when it comes to Curly's Hirschsprung Disease - I've been very grateful I opened my big fat mouth. In fact it happened twice today.

We met with Curly's surgeon for an annual check-up. I blathered on about how Curly has bad reactions to oranges and poppy seeds, and how his tummy troubles have been kept in check lately - which I partially attribute to the probiotics we've been giving him (referred by other HD parents who've been there, done that).

He was fascinated not just about the benefits of the probiotics (which he said made total sense), but also the network of HD parents I've connected with through the Internet.

First, he wrote me a strongly worded letter to send to my insurance, who will not let me use my medical flex spending account for Curly's pricely probiotics without a doctor's referral. The letter talks about his susceptibility to enterocolitis, which is life-threatening, and how use of probiotics could decrease his need for future visits and hospitalizations. (So take that, Insurance Lady who was giving me grief on the phone this week!)

But secondly, and most exciting, was his interest in doing research on Hirschsprung, specifically about what can be done to reduce the conditions these kids live with after their surgeries, which no one seems to know much about. You mostly just hear: They have a surgery (or three) and then they're "fixed up."

He then asked if he could tap into my network and if I thought the other HD parents would be willing to fill out surveys about their experiences.

And since we're all out here on the Web seeking information - and many are frustrated with the lack thereof - I figured we could find quite a few recruits. How cool if this research could help our kids and future generations of HD kids and parents!

3 comments:

  1. As I know you've already figured out, we are the best advocates for our kids. I love that your doctor is "sternly" sticking it to the insurance company. I hope your doc's research helps!

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  2. our surgeon is also always really surprised when I talk about the HD support boards and on-line community in general. It's VERY hard to find actual people close to you, but connecting with families all over the world gives you great insight into different ways of managing HD issues, what doctors in other parts of the country and world do and say about things. It's excellent! I'd be all over that! :)

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  3. I love to read Better Than Boogers,with 5 of my own and 1 with HD I need something to make me laugh! Hats off to your surgeon for taking an interest and not pretending he knows it all!

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