Day Twenty-three: New Med

New Med: ZZ's GI physician assistance called before I left the hotel this morning, wondering who to contact about the article I had faxed. I told her it was me and she explained that she had talked to 2 GI docs at the clinic and while neither one had used the exact methods in the study they were open to try it in ZZs case. She wondered if we were asking for a GJ placement and meds and I explained that, no it was just the medication we wanted to try. (The children in the study had GJ buttons instead of just the G button like ZZ has.) Anyway, she agreed to call in a prescription when I located a pharmacy close by. The article, from the Journal of Pediatric Gastroenterology and Nutrition 49:233-236, was a study where chronic pain meds were used to help with discomfort while the children were transition to eating by mouth with positive results. The medication that was chosen for ZZ out of the two in the study was Gabapentin. It took a bit of doing for the pharmacist to locate the med in suspension, but finally we did. We'll try it tomorrow.

ZZ had a scope of his esophagus in November to see if his fundoplication had come undone. Fundoplications are done to help stop the stomach acids from coming up into the esophagus and usually make vomiting impossible. Surprisingly the scope showed it to be intact and actually a little tight. So if I understand it right, now the thought is that the tight fundo is causing discomfort particularly while ZZ is eating and the retching, etc. is due to that discomfort.

Sessions: ZZ ate all of his bites and drinks in all 4 sessions today!! He's eating about 2 oz of food and 1 oz of formula during each 20 minute sessions. During his first afternoon session he did vomit. It happened after a drink and before I offered him a bite, not during a refusal, so I just cleaned him up, gave him a moment to settle down and continued feeding him. He still took his bites to the end!