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.

Wednesday, January 28, 2015

2 years after Diagnosis

Pumpkin is now 15 and has had a fairly good year until recently.  She did not have to get the g-tube and we stopped talking about that at the GI since she had gained so much weight on her own.

In August Pumpkin moved to Illinois, and I moved 3 months later.  This was a rough transition.  She came down with her dad so she could start high school at the beginning of the year.  I had to stay until I could sell my house, so I could keep working and make the mortgage payments.  Pumpkin grew a few inches, and still seems to be growing.  She hasn't had menarche.  She gained up to 99 lbs (9 lbs more than last year at this time), but I think that is starting to fall off again.  I think her BMI is falling off too.

Last month labs looked okay, but her folic acid was low and her RBCs were big.  This is new for her.  This month she is having a lot of abdominal pain again :(, painful BMs and blood when she wipes.  She is having more abdominal pain and lack of appetite.  We see her new doctor tomorrow, so I'm hoping for a colonoscopy to be scheduled.  She hasn't had scopes since 12-2012 when she was diagnosed.  My feeling is that we need to adjust her medication or change it.  We did try an IBS med, Anaspaz, which helps with symptoms temporarily, but doesn't explain the blood.

We've just started (2 nights ago) a multivitamin called Calm Multi for Kids, which has magnesium to help with sleeping, but it hasn't helped her yet.  Her 17 year old sister was helped by it both nights though.  I'm not sure if she is just not processing it well or what...  I like that it has fruits and veggies, omegas and is liquid for better digestion. 

I'll try to post again after tomorrow's appt.