When I started writing this blog, I said I was not going to dwell on Seamus' illness and I've tried to do that. Seamus is getting the best care available at Johns Hopkins Hospital but his condition has the CF, GI, and allergists stumped and frankly at this point, grasping at straws.
I made the decision to post about Seamus' condition today because this blog has gotten more traffic lately and I'm hoping that somebody out with Cystic Fibrosis (or a CF caregiver) has stumbled on it and they might have some ideas that our doctors have not thought of yet.
Seamus was born in September 2005 with Meconium Ileus, blockages in his intestines. They attempted to clear it with barium enemas and were practically ready to wheel him into surgery, when it finally cleared. That was the beginning of two and a half years of repeated episodes of blockages.
After many, many procedures and tests, here's a list of Seamus' issues (that we know of):
Distal Intestinal Obstruction Syndrome which causes Seamus to be hospitalized every 6-8 weeks to get a thorough clean out.
Gastroperesis (very, very slow stomach emptying) which required surgery to widen the opening between his stomach and intestines and placement of a feeding tube into his intestines to bypass the stomach. He does eat by mouth also, but he gets most of his nourishment through 10 hour tube feeds at night.
Gastroesophageal Reflux Disease (and probably also Bile Refux) which causes daily vomiting.
Eosinophilic esophagitis (they're still trying to confirm this one) which also contributes to the daily vomiting.
Allergies to Milk, Beef, Pork and intolerance to Soy. He is on an elimination diet of these foods but with the CF he has to take pancreatic enzymes with every meal and when he's on his feeding tube which are made from PORK.
Redundant Duodenum (extra loops in his small intestine) which alone isn't a big deal but since it's hard for the sticky stool to move through the intestines, this just adds more distance it has to travel.
I'm sure I'm missing something but you get the idea. Here's a list of medicines (at very large doses) and treatments he's currently on:
Miralax, Mucomist, Flovent (with and without spacer), Pulmozyme, Pancrecarb MS4 enzymes, Prevacid, Vitamax, PT Vest
Here's a list of medicines we've tried that didn't seem to help:
Flagyll, Probiotics, Reglan, Erythomycin
He is scheduled for another endoscopy in a few weeks to see if some of the new treatments and diet have decreased the tremendous amount of eosinophils which showed up on the last one in September. But since he's still vomiting every day and having trouble stooling, I'm not very hopeful.
We are incredibly lucky that his lungs have not been very affected. We know living with GI issues is much better for Seamus but it still is very difficult to see our son go through all his daily problems and not be able to help him.
If anyone has dealt with similar issues or has ideas, you can email me directly at firstname.lastname@example.org or leave a comment.
Thanks and now I'll return to writing happy thoughts.