Monday he still wasn't great so we told Erin to leave him with the feeds and to rather just keep him hydrated and give him rehydrate and water. He didn't gag once during he morning. When I got home from work I gave him 50mls of neocate and he seemed fine. We went off to speech and OT and on the way he started gagging. I should have turned around then and there but sometimes Jason comes right. Shame it didn't go well, the therapists really tried with him but he battled and started gagging badly again. We had to leave half way through the session. We got home and he slept from 3pm until I woke him at 6:30pm for a bath. After that he went straight to bed. I put neocate on the pump at a slower rate and less amount but still he woke up gagging for about 2 hours.
On Monday night I emailed Dr. P and Prof B. I have been doing a lot of reading about cyclic vomiting syndrome and Jason seems to fit this. Basically they go through severe nausea and vomiting for hours, sometimes days, that alternate with intervals of no symptoms. Jason has been like this his whole life, he can go for days or even weeks with severe nausea, gagging and vomiting and then suddenly it disappears and he is back to his happy cheerful self. The other reason why this comes to my attention is because an episode can be triggered by an infection, anxiety, emotional stress, excitement, hot weather. Jason can start with an episode just from being excited by playing with some kids. He can be absolutely fine beforehand and suddenly he sees the kids, gets excited and starts gagging. Distraction sometimes works. The symptoms include severe nauea, vomiting, abdominal pain and cramps, diarrhea, fever, migranes, dizzynes and sensitivity to light. Jason has MANY of these symptoms. So anyway Dr. Long has diagnosed Jason.
Tuesday I phoned the doctors rooms and pharmacy and arranged octagam for Wednesday in order for Jason to get checked out by the paed. I managed to get to work but Jason started with a low grade temp and was very lethargic. Again we couldn't feed him without gagging. I got home from work and tried an oral feed (via the syringe) of the stew I had made and that made him sick and gag and all sweaty. He then went and lay down and again he slept all afternoon. I tried giving him a neocate feed while he was sleeping and that again made him sick, he woke up from a deep sleep gagging and vomiting. He went back to sleep, I woke him up later for a bath and bed. Although he hadn't had much since the 2pm feed I decided to give him a break and just to give him water. That didn't work either, he woke up gagging on water and I had to stop the water.
On Wednesday morning I knew we weren't just going in for octagam. I packed for a week and while I was packing Jason was gagging and vomiting and vomited a lot. He also had a low grade fever. Just as well we were going in. I know Jason he gets to a point where nothing works besides a drip. As soon as he is hydrated he starts coming right.