That is what the GI doctors gave us as a diagnosis today. They were more than pleased with Braedon's development and weight gain (he went from the 33rd% to the 50th% in 6 weeks) and his tummy sounds were great!
They were overjoyed with how well he has done the last month since he has been clear of episodes throughout that time frame.
Our protocol now is to try taking out his morning dose of the medication helping his digestion and see how his body responds to that. She agrees the evening dose for now is still wise until we see how he does and then maybe go to every other night if he tolerates the first decrease well.
We went over lab results and everything looked good except his IgE levels. There were very off. This is an immunoglobulin that deals with allergies. It can be a result of a parasitic infection (he has more than been tested for these and everything has been clear) or allergy issues. We have an appointment scheduled with his allergist at National Jewish mid September (that was their earliest :( so we will have to be patient) to do more testing. The most popular I guess are feline, dust mites, mold and pollen. So I guess that is where we will start. These antibodies can be hyper-active if he has been in contact with his allergies. So we will see what they say and possibly try adding soy and/or dairy back into his diet.
I did ask what would be next if the weaning of meds doesn't work. She said they aren't sure. There are clinics around the country that test the digestive issues, they don't do these certain test. They are in Columbus, Ohio and Milwaukee, WI. She said even if they were to give a diagnosis, they would treat it the same way and there isn't a cure/fix to the problem. He would be this way for life...yay! =/ She said there is the possibility of using Botox to inject into the sphincter (sp??) between the stomach and small intestine to keep it open so food can be passed through. Please be in prayer about this. They have someone who can do this but it doesn't sound very fun or easy to me....
Heading to bed now, thankful beyond measure that the labs came back mostly normal and the doctors were pleased with how Braedon looked and acted while we were there. Praising God for one step at a time!