SCD Intro: Part Deuce (literally)

Not sure if our son was experiencing the 2-3 month setback that sounds common on the SCD, but he was pretty messed up last week and on into the weekend. He hasn't had anything "illegal" to eat in a long time, and the funny thing is that he would tell on himself if he ever did. He eats quite a bit of fruit (cooked) -- maybe that messes him up a bit. (?) In any case, the blogging gets quiet when that happens as we focus in on him...

We decided to go back to diet square one for a day to see if we could "fix" things. It's nice to see instantaneous, positive changes in his symptoms with the intro diet. It's comforting to know that we (might) have something to rely on when he gets into digestive trouble. The intro diet is definitely not a long-term diet, unfortunately, but hopefully we can figure out whether or not it was a food we'd given him that screwed him up - and avoid it in the future.

It's tricky and stressful. There are a lot of SCD websites out there. There are a lot of pediatric Crohn's sites out there. However, there is not a lot of information about treating Crohn's with SCD among kids! SCD would be hard for other kids, but our son's regimented personality makes it possible for us.

Nutritionist

We met with a nutritionist at children's today. The best part of the meeting was weighing our son and seeing that he gained weight since the last visit. On average, I'd say she's not very helpful. She compliments us/our son on eating a good diet... but can't/won't help us figure out how to get the blood to go away. We're going to get back to food basics this weekend to hopefully clear him up. It's disturbing us, even though he says he feels good. There is a naturopathic-trained doctor near my office that I may go speak with. He recommends the SCD diet books and I wonder if he sees pediatric patients.

SCD Update

We just surpassed the 6-week mark on the specific carbohydrate diet. In summary, we think it is working for Cyrus and we will continue on the diet. He has energy, is happy, likes what he's eating so far, and is mostly symptom free. I still think there is something we give him (probably this particular mayonnaise) that irritates his GI tract, but we're learning and documenting his food intake and symptoms.

It is apparent that Cyrus feels as good now as any time in the last 10 months. The time that he was on medications was absolutely rotten (for him and us) and I don't know how I'll ever voluntarily submit him to it again. Of course, I'm always the skeptic and will be vigilant for signs that things are going wrong with the diet. However, I've observed enough progress both symptomatically and in his overall attitude to think that inflammatory bowel disease is affected by what one eats. (despite what the ccfa.org official website advocates)

CCFA.org kind of ticks me off with the message they put out. Every corner of the foundation's website is littered with statements like, "no matter what, take your medications". I get it, to some extent. But to put out a blanket statement of guilt for not taking medicine (crappy as they are) seems wrong...

The SCD is no picnic, I won't lie. Cooking, cooking, cooking,... if you don't like cooking, it ain't for you! Planning every single meal of every single day is a chore. Going out to eat is not an option (yet) with the kids. Every so often, we put the kids to bed and bring home some Thai take out or pizza! On the bright side, we spend less money on going out to eat -- and the kids were never really that fun to eat out with anyhow!

Stomach Update

Cyrus seems to be doing better today. Although he wasn't hungry for too much, he did end up going to the bathroom which hopefully means he doesn't have an obstruction. We had a friend over this morning to play and he went golfing with Daddy this afternoon and seemed to be in pretty good spirits despite being tired from being awake late last night.

Throw Up

Cyrus tossed his cookies (well, cheese) about an hour after he went to bed last night and was complaining about stomach pain from the afternoon onward. For most kids, this would mean something bad was eaten or didn't agree with their stomach. For Cyrus, we have an additional more serious possibility to think about: bowel obstruction. This sucks. I'm taking work off today to keep an eye on him in the event that we have to take an unplanned trip to Children's.

This is life with a kid with Crohn's. Every single thing that might *ordinarily* happen to a 3 to 4 year-old (e.g. food poisoning), potentially has an alternative Crohn's-related explanation. Distinguishing between the two is a daily challenge and leaves a constant knot in our stomachs.