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). :)
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). :)
Would you consider trying Enteral nutrition to bring him into remission and then go back to the SCD to maintain it (or simply go back to a regular healthy diet and use EN when and if he flares again)? Have you come across the book Beat Crohn's by Margaret Oppenheimer? It details the research on this. Most pediatric GIs in the US won't use or even recommend it even though it's been shown repeatedly to be more effective than steroids in inducing remission in children with crohn's and has none of the negative side effects associated. I'm sure he wouldn't be thrilled to be on a liquid diet for weeks but it might be an option you could consider?
Sherry
Also, EN is the first line of treatment in the UK and other countries when it comes to pediatric crohn's. They don't tend to use the other drugs, as far as I understand, unless it fails (it doesn't work for everyone, partially depends on where in the GI tract the crohn's is located).
Sherry
Thanks for your thoughts. I've heard of EN and, you're right, it's never been discussed once over the last year. It probably wouldn't go over well with most kids this age, but our son might go for it. (Maybe...)
We would definitely consider it as parents on his behalf. At a minimum, it seems reasonable to discuss with our GI doc over putting him on another immunosuppressive drug. Half of the families we know and hang out with had at least one member catch the H1N1 strain of flu this year. With 6-MP, we might have spent some serious time in the hospital (or worse). As far as I can tell, the *next* medications wouldn't do his immune system any favors.
We've read many books with a similar title/theme, but haven't read the book by Oppenheimer - is it worth looking into?
Bryan
Bryan,
My three year old had UC and not crohn's so EN wouldn't necessarily work for her (though it might according to Jini Patel with supplements). I've ordered the Oppenheimer book and I read the Dragonpack site (for parents with children with IBD). She posts there. She's very knowledgeable. You can search the site's archives and look for discussions on EN there. There are a few children on that site who have done very well on it. You can then decide if you want to buy the book. If my child had CD I would take it any day over pred/6MP etc. My daughter's currently on pentasa, had pred on diagnosis but the idea of 6MP terrifies me and like you, I don't know how I would consent to it.
Best, Sherry
I've been in and out of S. Children's for years - if you ever want to chat, let me know. I protect my son's privacy, but I have been through quite a bit of diets and drugs.
Best wishes,
Erica