Today marks the day that we've been on the SCD for 5 months (and without meds for about 7 months) for our son's Crohn's disease. We had lab work performed yesterday and discussed the results with our son's GI doc at an appointment this morning.
The Diet
We started the intro diet on July 3, 2009 and have returned to it on two occasions to clear up major flares. According to the Pecan Bread stages table, we are in the range of stage 2 and have flirted with stage 3 foods occasionally. Foods through stage 2 that he does not do well with include: anything apple, tomatoes, asparagus, and cinnamon seems to cause some irritation as well. Almond butter in excess causes more toilet time, though having it once a day seems to go over okay.
In 5 months, we know of two occasions where he's had illegal foods: smoked salmon and an illegal grape juice. Both preceded and seemed to be associated with a bad flare.
Going back to the introduction diet does clear up the IBD symptoms quite a bit, but is beginning to be a drag from our son's perspective. He no longer eats the cheesecake (without prompting from us) and the chicken broth/soup is barely tolerable to him.
Symptoms
After 5 months on the diet, I figured we would be a little better off than we are now with the clearing up of symptoms. In the last week, our "batting average" is: 1 to 2 runny poops per day, every other one has some red in it, and rarely any pain. When there is pain, it's usually around the time that he has a bowel movement. He's had about 2 solid poops in the last 5 months, though we've had some streaks of oatmeal consistency poops. We've learned to gauge symptoms by his mood and he's generally pretty happy. However, he's definitely more lethargic and has less energy than (1) a typical 4 year-old boy has, and (2) what I think he otherwise would have without IBD. Anemia or Crohn's or partly personality? Time will tell.
Blood Work
It came back okay. His hematocrit was a bit low for a 4 year-old at 33.5 (units?), but not overly so given that the bloody stools have not subsided. The GI doc did not want to put him on any iron supplement. His Sed Rate (ESR) was 25, which is a little higher than what it was in July but not too far out of normal. C-reactive protein (CRP) was in the normal range as it has always been and doesn't seem to be a good marker of Crohn's symptoms. White blood cell counts appeared to be high-ish, and they were at a previous appointment in July as well. It's unclear whether or not that is Crohn's-related or related to being a 4 year-old who spends time around other 4 year-olds.
Appointment
Since July, his weight increased from 16.1kg to 16.9kg -- almost a 2-pound increase. Height increased as well and he's pretty close to his growth curve as a baby.
The GI doc we see is the head of the GI department at the Children's hospital we visit. He's the most experienced doc in the department and is quite open-minded when it comes to treating IBD. "Whatever works", was a phrase he has reiterated to us. At this appointment, he was quite a bit less conservative in his approach towards considering treatments for our son. I mentioned that blood in the stool is present 6 out of 7 times and this seemed to get him back on the "I want you to consider XX medication" track. The XX included: Pentasa, Methotrexate, and Budesonide ("prednisone-lite"). I told him that while I'm hesitant to put my son on anything after the 6-MP incident, the real battle would be to convince my wife (who is as stubborn as a mule on this issue). :)
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