Anemic
Bryan
We are reasonably certain that the bad flare up was the result of getting a hold of an illegal food. The flare subsided after several days back on the intro diet, which our 4 year-old seemed quite tired of by the end of day 2. We've noticed that his face is more pale and that he doesn't have much energy lately. He's also fairly irritable (more than his usual irritable self). We're thinking that blood loss during the flare caused some anemia and are going to have his blood drawn this week to verify.

We're toying with different ideas for food and symptom journals. We kept an online food journal for a while but it got to be a hassle. It would be nice to have something portable and quick... I know, a pen and a notebook work - but I analyze data for a living and want something e-accessible.

I'm going to play with this offshoot of Twitter:
http://www.tweetwhatyoueat.com

It doesn't totally fit, but it's not bad.
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2 Responses
  1. Gillian Says:
    November 26, 2009 at 3:05 AM

    Hello. I just stumbled across your site, and wanted to congratulate you on providing some realistic information on SCD for kids. We too have a four year old son with Crohn's - diagnosed at two. We're in New Zealand, and it's rare here for someone of his age - not a lot of support.
    We did the SCD last year for about four months. It seemed promising at first, but then he had a flare up so bad he was hospitalised and required an NG tube for several months to rest his bowel. We became disheartened after that, although have continued to explore various diets.
    He is now on immune suppressants - but it's not working so well and fear/guilt is bringing us back to the SCD again. We just feel like we have to do SOMETHING, and wonder if we should have stuck with it for longer.
    Obviously very keen to see how things progress for you.
    Thanks again for sharing your story.
    Gillian.


  2. Bryan Says:
    November 29, 2009 at 9:00 PM

    Thanks for your comments Gillian... it sounds like you are exactly the type of person we wanted to reach with this blog. We should stay in touch to share our thoughts and struggles with the disease (and the diet, if you decide to get back on). Knowing you're out there and listening motivates us to continue our documentation of our SCD experience.

    We're in Washington State, US and it's very rare here as well. At the Children's hospital we visit, which serves the largest region in our country, they told us they see about 25 kids (total) of this age or younger with a form of IBD. So, IBD is definitely rare at this age and not a lot is known about how to treat it. I will say that the naturopathic doctor we visited seemed more confident in his ability to help than the doctors at Children's.

    I'm a hopeful skeptic of the SCD. My wife and I completely understand and felt the same guilt you express with the immunosuppressive drugs and we too wanted SOMETHING that we could do to help our son. The 6-MP (and prednisone) did help our son's Crohn's symptoms, but while on the drug he could not effectively fight the common cold and the third illness sent him to the hospital for 3 days with a relentless fever and a skin rash. I've been waiting for SCD to *cure* our son and it hasn't. But it seems that strict adherence to the diet keeps symptoms even so far.

    I'll post our SCD update now for others' to see...

    Please stay in touch!


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