Pumpkin's First Treatment Begins

This week Pumpkin started her first treatment.  As you know from my last post we decided to go with a nutritional pathway rather than meds.  This made sense for us since she is so underweight and because of a low side effect profile. 

Once I accepted that she has Crohn's, I also had to come to the understanding that this isn't something that I can control or fix.  We've been trying to get her healthy on our own for 13 years.  Yes, we've made her better, but we've never fixed her and she doesn't get well.  She still can't eat much and she gets full quickly.

So Tuesday we brought her to the hospital to get a naso-gastric tube put in.  This would allow her to do a treatment called EEN (exclusive enteric nutrition) in which she gets fed a special formula exclusively for 8 weeks (no other foods) with water.  Studies have found up to 80% of kids who do this treatment go into remission, but then have to either continue it part-time (one month of every four exclusively, or 5 nights a week) or go on long-term meds to keep it in remission. 

Our experience at the hospital was not what we were expecting.  We were planning that she'd get the NG tube put in easily (and be taught how to do it herself so she can take it in and out at her convenience), then would be monitored as they increase her formula intake for a condition called "refeeding syndrome".  Instead, the first time they attempted to put an NG tube in her, it was too big.  They somehow scratched up the inside of her nasal passageways and she was traumatized.  They had to locate a smaller NG tube and have it flown down 6 hours later from Anchorage.  She decided that she would do the placement herself with coaching after that, but both other attempts by herself with the softer, smaller (6 french) tube was too painful.  She finally flat refused to try again, even when we tried to sedate her to do it.  She decided it wasn't for her, and that she would drink the stuff instead.

We came home Wednesday morning, brought back to the medical supply store all the equipment we had prepared to use to pump it into her, and started the formula.  On Wednesday she drank 5 cans.  On Thursday she drank 6 cans, and yesterday she drank 7.  That will be her maintenance amount for now.  She continues with 7 cans a day.  She still doesn't have much appetite, and doesn't seem to be too bothered when food is cooking in the house or people are eating around her.  She still feels a little sick when she drinks the formula. 

On Wednesday she had a small poo, but then didn't poo again until yesterday when her tummy was hurting and she had some painful diarrhea.  I'm not sure what that means but the pain was relieved when it was over.  She hadn't had diarrhea for a couple of months, so it is concerning.  I hope it was just her body getting used to not having regular food.

I've found a good forum of parents of other kids with inflammatory bowel disease, and it really helps to be able to talk to other parents who have been there and done that with their kids.  They've helped me come to accept this diagnosis and I think will be there for me as we walk this journey wherever it leads us.