Saturday, January 31, 2015

January 29 Office Visit

So we went to see the GI again.  He didn't seem at all concerned with Pumpkin's symptoms.  He said she looks good because her weight is "10%-ile".  I tried to point out that her BMI is not normal because her height is 94%.  He seemed happy because the BMI was 14.  I guess he doesn't look at percentiles like her pediatrician.  Her BMI is "0%ile".  He didn't have much to say about her bleeding after insisting that she must have been constipated, although she wasn't and hasn't been.  He discussed meds to increase her appetite and nutritional shakes.  He doesn't remember that she has done all that.  He brought up G-tube.  Not an option yet as far as we're concerned.  He finally brought up an option I was hoping for - rescoping.  We'll do it on Tuesday.  I am hoping for a clearer picture of what is going on inside after 2 years of treatment.  I don't expect a whole lot since most of her disease is in her small bowel where the scopes can't see it.  I think we're ready for a major med change.  Something has to be better than this.  Remicade?  Regardless, I am also doing research on some major diet changes.

Oh, and the "Calm" supplement seems to be helping.  She is getting to sleep easier.


  1. Glad she is sleeping easier, that has to make healing so much better. I hope this re-scope works and gives you some answers.

  2. Hi Carol,
    My heart goes out to you and your family. My 15 y.o. daughter was diagnosed with Crohn's disease this past November after 10 months of nausea, abdominal pain, and diarrhea. We decided to do steroids to get her into remission, but at about the same time, we started her on the Specific Carbohydrate Diet (SCD). Almost immediately her diarrhea stopped. She is now 2 weeks off steroids and her blood work is normal - her C-reactive protein went from 17 to 0.5. We are waiting for the fecal calprotectin results next week. I am hopeful that the diet has contributed in a major way to her healing. If you decide to make some diet changes,I would be happy to share my SCD recipes with you. It is a restrictive diet but we have been able to enjoy some good meals and treats. Praying for Pumpkin - with God all things are possible.

  3. Hi Deanna. We've changed our diet to Whole 30, which is very similar to SCD but a little less restrictive. It seems to be helping. We're also changing docs. First appt is next week.