GI Issues

Macayla has always had problems with constipation, but she went over a week without a BM and it was the longest I’ve ever seen her go without. So on Saturday, I gave her some mineral oil through her feeding tube and an enema. But nothing happened on Saturday. I noticed something black in her feeding tube valve, so I drew some of her stomach contents out and found black blobs floating in it. We dismissed it as possibly left over blood from where we changed out her feeding tube at the beginning of the month. Sunday, the BM’s came with a vengeance but her stomach contents changed to a dark brown liquid. This cleared up by Monday, but was back on Tuesday. We already had an appointment with neurology and our pediatrician set for Wednesday. After all of the dust settled, we are testing Macayla’s stomach contents and BM’s for blood. We started giving her Maalox to try and promote healing of her stomach lining because that seems to be the most likely problem. Her stomach contents seem to be staying clear. But this morning she got very upset and began to cry. I can’t remember the last time she cried. She seemed to be in pain, but it is hard to tell. She can’t communicate anything and it’s hard to tell if it was from pain or frustration or just an emotional outburst. To complicate matters, we are weaning her off Cystagon (an experimental medication). We believe that while she has been taking this medication, it has been interacting with one of her seizure meds and keeping the seizure medication level down. As we wean her off the Cystagon we expect the seizure medication level to increase. That increase could cause behavioral changes. So Macayla’s responses to her environment are tricky to read. She could be having a seizure, be in pain, be having an emotional outburst, be reacting to changing medication levels, or she could just simply be having an appropriate response to something, like a dirty diaper. The events that have kept her up at night that resembled seizures could have been responses to a painful stomach. We will be doing an EEG soon to determine if that is the case.