It took Jonathan about ten days to fully recover from his latest vomiting spell. We're not entirely sure if he caught another bug or if it was the new medication that he was on, since he seemed to be struggling before getting "sick" and because the rest of the family was sick shortly afterwards. I stayed home on Wednesday from work because of the flu. I guess it could be a combination of both. Either way the doctor and we decided to stop giving him medicine for reflux and emptying (bethanechol).
Jonathan was placed on the antibiotic erythromycin instead of bethanechol. Personally, I was excited about the new option. For a few days he seemed to be doing really well on it. He got over whatever was causing him to vomit and seemed to have a larger appetite, more then usual asking for snacks from the fridge and pantry. Today was like any other day, except that an hour or two after being given erythromycin this time Jonathan broke out in a bad rash all over his body. A quick Google search confirmed that a big rash all over the body is a severe reaction to the antibiotic. Additionally, every site said that if it is a reaction, to seek a doctor immediately. So, Stacey got him into see the pediatrician shortly thereafter. He agreed that it was probably an allergic reaction and that we should stop using erythromycin. Since this drug was our last option, we'll have to talk to the GI doctor to see if she would support trying out bethanechol again just to make sure the recent episode wasn't just due to getting the flu or something similar. The pediatrician also mentioned that if erythromycin seems to work and it is our only option, we could work with an Allergist to get him to a point where he could take it but not have a reaction to it.
Stacey also took Jonathan to see a Dietician this week. It was our first visit and what she told us made a lot of sense. Overall, she also encouraged us to push for growth (hormone and genetic) testing, since, in her opinion, something just doesn't seem to be adding up. Like I've been saying for awhile now, if Jonathan gets his daily requirement of calories he should be growing. Although we've had ups and downs, overall I think we've been giving him enough to where we should have seen more growth. Past goals have been to give Jonathan over 100% of what he needs, and we have found that difficult to maintain (not surprisingly). Even if we weren't hitting those goals we have been at least hitting the 100% goals with not much to show for it. She also mentioned that giving him too much (overshooting his requirements) could have an adverse affect on his system if it's being overloaded. That idea is consistent with what I've mentioned before about the cyclical nature of Jonathan's ability to keep food down. It could be as simple as after a certain point his body just needs a rest to deal with the overeating and that's why he rejects all food. We were also given a handout on a real-food smoothy through a G-tube study that looks very promising, but we're not starting that process just yet. The dietician wanted to wait and see what happened on erythromycin. We're going to take the approach over the next few weeks of only feeding Jonathan what his body needs (based on weight), and allowing him to snack on real food as he wants. Our hope is that this approach will eliminate the vomiting, establish a solid amount of time consistently getting his caloric requirements, so that we can either see him respond and gain weight or use this information to highlight the fact that something just isn't right.
We have our next visit scheduled with the GI doctor in a few weeks, unless she wants to see us sooner due to the recent developments. Our appointment with the Endocrinologist (growth issues) isn't scheduled until the first week of April, unfortunately. We've been trying to get in sooner, but his appointments are pretty well spoken for. My hope at this point is for things to calm down and to get back to what we call our abnormal normal.