coming off SCD?

[Guest guest]

12 y/o dd, who has been scd since being dx'ed w. a whopper of a case of Crohn's

at age 8.5, asked me about coming off SCD. She has done so well on

SCD--although it took a very long time to get that initial flare under control,

she has not had a major flare since (a few minor ones, able to be dealt w. w/o

meds, just going back to the intro diet and laying low for a few days), and has

been off all meds for 2.5 years. WOW. I really can't believe that.....(that

she's been SCD for so long, and that we were able to get her well enough to ever

go off meds [which was not our aim when we started, we just wanted her to get

healthy any way possible, and have a chance at gaining height and weight (both

of which, thank G-d, she has done beautifully)]

I have a feeling that most people who could answer this question are like me and

don't come to this group so much any more, but, if anyone has any info, I would

really appreciate it.

We have her labs done, specifically to look at ESR and CRP every few months.

Her GI (who is 100% SCD supportive) is kind of in a holding pattern w. us since

last year. I took her off meds w/o his consent b/c he said we had to do a

colonoscopy to verify that there was no disease activity. DD HATES the prep and

the procedure, and they also use general anesthesia (maybe not at her current

age?) so I would rather avoid that as well.....I feel that, as long as her labs

are okay and she is symptom-free, it is asking for troubles to do the prep

(which, itself, can cause a flare), and it's hard for me to see dd go through

something which is really psychologically traumatic for her. We saw GI a few

months ago, and he said the same thing and we left it that we would come back

if/when we were ready for dd to have the colonscopy.....

So I don't feel like we have any real guidance here. We could just take her off

and see what happens, but that seems a bit scary. We tried adding in organic

brown rice last spring, and, after a few weeks--mini flare. Every few months

for the past year, she's had one meal " off " and has never had a problem (note

that I am not suggesting this for others, and dd has been SCD for 3. 5 years).

Thanks for any help.

Ellen

12 y/o dd scd since 5/06 for Crohn's