About a month ago, we took an unexpected one week trip to Ohio for a family emergency. Ian started having chewing and swallowing issues. We thought they were purely behavioral, until recently when we figured out that he began clearing his throat very frequently at the same time. Prior to making this connection, we went back to the original rewards protocol. We saw improvement for about three days. It had been going on for about ten days before this three-day improvement. While we were in Ohio, the throat clearing and chewing-swallowing refusal was not frequently resulting in vomiting... mostly retching and gagging.
The restart of the trouble, after the three-day improvement, was about one week before he got sick. These troubles resulted in four vomits the week before he caught the cold. This is when the chewing and swallowing refusal began resulting in frequent vomiting. He got sick on Feb. 6th. The cold seemed to be mostly respiratory, lots of coughing. We were doing his nebs and also doing his hydrocortisone. He's appetite was practically nothing. We did the best we could to get his calories in, averaging about 700 a day. He was meeting his fluid needs and getting about 36 oz a day. He was not experiencing any diarrhea of fevers at this time.
He started showing some improvement with his cold after a few days, and even had two days where he ate over 1000 calories. But then, he started back up again, with diarrhea this time and very little coughing. He had been sick for one week when the diarrhea began. Still no fevers.
The chewing and swallowing refusals do not seem to be linked to a particular time of day, or special meal. He seems to refuse and have trouble, all the time. He is even rejecting purees at times. I don't know how to tell if it is a behavioral issue going terribly wrong that is being made worse by an illness, the simple fact that he is sick, or a more physical concern because it started back when he began clearing his throat and wasn't even sick. We had previously decided with his feeding team that it was a behavioral issue because it began when we went out of town. That was the first time things had gone awry like this and it was the first time he had left home for that long of a time and had so much disruption to his schedule.
Yesterday, we decided enough was enough... we would simply take away food, give him 24 hours of Pedialyte and fluids and give his gut a rest. We hoped that would give his system enough time to reboot. The pediatrician agreed, but said if he wanted a few snacks, to let him have them. Well, go figure, the kid was really hungry! He had some Cheerios and a donut. He also begged for pizza at dinner and ate it like crazy. He was very interested in food when we weren't pushing meals and protocol....... but, he wasn't getting structured foods or meals. So, he didn't really have 24 hours of Pedialyte, but had a great day. There was no refusals, retching, or vomiting.
This morning, he once again showed interested in food. He ate a whole bag of Goldfish crackers and some cereal with milk. A couple hours later we gave him his applesauce and Fruit-Eze. This was his first structured meal in the chair since the food removal Friday morning. He did great through the whole meal, until the very end. He promptly gagged on the last two bites. Afterwards, he began retching and threw up his breakfast. I don't know whether to think it was behavioral (since this was his first meal back in the chair) or physical (because we were determining the amount of food he was getting and not deciding for himself). If it is physical, we are concerned it could be the wrap or a swallowing/reflux issue. I have noticed that he usually talks about needing to poop around these vomiting and retching issues.
Sometimes he goes, and other times, he sits on the potty and tries but never goes. I don't know whether it is stalling, or a bowel comfort issue. The stool consistency doesn't seem to be the issue, but we are wondering if maybe he is experiencing bowel discomfort when eating with his gastro-colonic reflex. And potentially not being able to cope with his bowel sensation during eating and also during bowel movements. We aren't sure if increasing his gabapentin might help alleviate any of these symptoms and provide him an increase his desire to eat foods during structured meal times.
Here are our guesses as to the cause of the troubles:
1) A behavioral issue with swallowing while away due to schedule and environmental disruptions... where he had improvement with protocol when returning home... but then started having problems again with his body's sense of an oncoming illness. And in that case, we would now still be having GI issues for a while after his recovery?
2) A physical issue independent of travel and behaviors, because throat clearing began at the same time? (fundoplication problem or motility issue)
3) A bowel discomfort, visceral hyperalgesia problem since he seems to be mention pooping several times that he has trouble. Although, it doesn't seem to be based on if he has pooped before eating and he doesn't always poop when he says he needs to (but then again, is that because there is a bowel comfort issue to begin with?)
I believe an option #4 of being purely behavioral is untrue at this time. There seems to be too many other components to base his troubles now on behaviors alone.
That seems to sum things up. Right now, we are looking to physical issues (illness or reflux / fundoplication / motility). This seems to be a similar type of trouble we had before his motility and visceral hyperalgesia were under control.
I have a call into the Richmond Feeding Clinic and the GI department at CHOP, but did not hear from them yesterday. I don't know whether his Eryped or Bethanechol would benefit from an increase or not. He does have a gastric emptying scan scheduled for March 14th. Also, this doesn't seem to be the same trouble we had recently, where increasing the Benadryl and Periatcin helped. He does not seem to be struggling with mucus unless it is the mucus he creates vagal-ly when retching.
We are concerned about his troubles and he recent illness in terms of weight loss. While we don't know for sure, we are fairly certain he is losing weight. Please let me know your thoughts and ideas!