Update October 2015

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Thursday, June 11, 2009

The Internet is a wonderful thing

Instead of telling a cute story about the boys today, I'm going to reflect on what an amazing thing the Internet is.

I like to joke that I'm so glad they didn't have Facebook when I was in high school. High school was hard enough dealing with real-live people - I can't imagine having Facebook drama on top of it.

But I'm incredibly thankful for Facebook now. My Babycakes has Hirschsprung Disease, a not-very-well-understood condition that he was born with. It makes it so the colon (or a section of it) doesn't function. After a few surgeries, he's doing great - but will probably always deal with constipation and/or diarrhea, and for the next few years we'll be dealing with severe diaper rash and the risk of tummy infections (he's had about six in the last year).

I've never met someone in real life who has the disease or has a kid with it. The closest I've come is my aunt in Arizona whose coworker's grandsons (twin boys) have it. But thanks to Facebook groups, I've found this amazing network of people who are living with or caring for those with the disease. They've been great about answering my questions and letting me know what's coming around the bend. They warned me about anal dilations (they're as bad as they sound) and recommended probiotics (I'm a huge fan).

And here's the cool thing: Now I'm starting to help others with my experience and connections. Who would have thought?! When Babycakes was diagnosed 13 months ago, I had never in my life even heard of the disease.

So here's the story that prompted this rather rambling post:

I was on this baby site that I visit sometimes called thebump.com (it's a spin-off of thenest.com and theknot.com). A mother on the "Special Needs" board was at her wits end because of her son's chronic issues with constipation. He's 2 and has never pooped on his own. She's going through the enema and laxative routine (I can see the Hirschsprung parents nodding their heads) and the little guy is still miserable and in pain.

And here's the kicker. Her doctors keep saying that it's all in her head. And she - rightfully so - is mad as heck. I asked her if she'd ever heard of Hirschsprung, and she had in fact stumbled on it (thank you Internet) but again, she's having trouble finding a doctor to take her seriously. They were testing her son for food allergies.

So I find out where she's from and post a couple queries on the Hischsprung groups' Facebook pages. The next day a guy gives me the name and number of the doctor in her area who operated on his grandson with Hirschsprung. I forwarded it along and she called the same day.

I guess we'll see what happens with the rest of the story. Who knows, she might hate the doctor. Or her son could end up having something completely different than Hirschsprung. But just the fact that sitting here from my computer, I so easily connected these people that I'll never meet in real life ... it just puts me in awe of the Internet.

6 comments:

  1. I was actually thinking of you the other day. I was watching Mystery Diagnosis and the parents were dealing with their child never having pooped on his own and constant constipation until he was 2 or 3 when he was finally diagnosed. It turned out he had Hirschsprung Disease. I immediately thought of you and your blog. Weird right?

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  2. A little wierd, but maybe not as wierd as you think - because I bet that kid was Tyler - I link to his mom's blog at right (Tyler's Journey). He was featured on that show. I connected with his mom through Facebook. See what I mean about a small world!

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  3. I absolutely love thebump. I'm on the message boards all the time. I have gotten a lot of good advice from there.

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  4. And we're so glad to have "Hirschsprung" friends like you! Without ye olde internet, we'd be on our own emotionally too. Nice to know there's others out there living their lives and helping their HD kids have normal childhoods... which looks like a weird word. Should it be childrenhood? Here's to you and the fiber and cables that connects us!

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  5. That is totally the kid I saw. How crazy!!! What a small world!

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  6. I just find it sad that doctors won't take her seriously! And it's amazing to me how a child can live 2 years without pooping. My son would have died from enterocolitis long before we got to the two year mark if the doctors hadn't taken US seriously! Thank God for our amazing OB, pediatrician, and surgeon!

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