As I had posted last time, we were waiting to see a new GI doctor, specifically a motility specialist! While I was excited to see what new ideas Dr. O would come up with to help Alex, I always dread the thought of a new doctor. Those of you who have walked this journey with us for a while can imagine how daunting the thought of giving a medical history is! Anyway, Alex and I headed into Fort Worth early Thursday morning for what would turn out to be a marathon of an appointment. I am not quite sure I would even be able to chronologically go through the appointment (we were there 5 hours) so I am just going to summarize the results/plan. So this should be pretty short and to the point!
Dr. O's main concern at this point is that Alex is "SEVERELY malnourished". After his exam he was extrememly concerned. Alex has had some skin discoloration on his face and neck that I have asked a million doctors about. Apparently it is a severe vitamin deficiency. We are running a bunch of tests, but his feeling is that Alex is not absorbing any fats. If you don't absorb fats you don't absorb the fat soluble vitamins (A, D, E, K). One of the main causes of this is pancreatic insufficiency. Alex has now had 7 episodes of acute pancreatitis. Some lasting months. Each time you have pancreatitis you damage the pancreas. It would not be shocking for Alex to be PI. What is shocking is that he has never been tested! If that is the case, we will replace pancreatic enzymes. In the short term, he is starting TPN/Lipids Monday. Dr. O is letting us start at home (vs. being admitted. Love him). We will run labs everyday while we make sure he is adjusting well.
Concern two is that Alex is always VERY distended. His xrays all show his intestines to be full of gas. We have never been able to address this problem adequately. We have used antibiotics sporadically to treat small bowel bacterial overgrowth, but never on a regular basis. We are starting one antibiotic to use all the time and a second one we will use the first 10 days of every month in hopes of helping this problem.
Once we are sure he is okay with the new antibiotic from an allergy standpoint, we need to start some very specialized vitamins. They are a prescription vitamin that are usually used with Cystic fibrosis patients. They are fat soluble vitamins that are water soluble. Basically they are fat soluble vitamins that you don't need to absorb fat to absorb the vitamins. We are having a hard time finding a form that has no corn in it, but we think we have found one. Regardless, we have to try and hope he doesn't have an allergic reaction bc we have to get these vitmains into him.
Down the road, they would also like us to try a different formula that could potentially get some more calories, fat and protein in him without needing to increase his feeding rate (which we can't).
Concern three is Alex's daily stomach pain. Dr. O feels like a large part of his pain is the constant gas and distention. Hopefully, the antibiotics will help. We are also trying a new feeding set up. We will continue to drain his stomach with a farrell bag. We are also now feeding his Jtube "through" a farrell bag. It allows Alex's intestine to "push" any formula or air it can't handle back into the farrell bag until the pressure lowers and then it goes back in. It is almost like a release valve or escape. I was concerned that we would just wind up with a farrell bag full of formula, but so far it is working exactly as it should. The hardest part is keeping the farrell bag well above his head while he gets around. I just love that Dr. O had so many new ideas that had never been tried.
Concern four is the amount of output Alex has from his Stomach. This has always been a problem. The only time we saw any improvement was after Alex's last pyloric dilation. Dr. O is going to go in and do another pyloric dilation and use botox to help it last longer/work better. This will also give him the opportunity to scope him and see how his esophagus, stomach and duodenum look.
We triaged liver and reflux until next appointment! We will go back in a month to see how the changes are working and what needs to be tweaked. I was so impressed with teh amount we got accomplished as well as the caring, compassion and kindness his entire staff treated us with.
We look forward to possibilities of Alex feeling better adn "doing" better bc of this team.