Friday, August 19, 2011

Today's GI Appointment

Daylon had his follow-up appointment with the GI today. His fecal fat study came back normal, so he does not have any malabsorption issues.
For the most part, it was a very good appointment. Daylon has not been eating well at all lately and has been refusing his Boost, but somehow still gained about a half a pound. She gave me some ideas for getting him to drink the Boost and gave me a prescription for Periactin for him. Periactin is an antihistamine that is also used to stimulate appetite. I normally would not worry too much about his appetite, but the last two days he has eaten hardly anything at all. Yesterday all he ate all day was; a waffle, 3/4 cup of applesauce, 1 bite of a chicken nugget (I gave him 4 nuggets and potato salad for lunch), and about 1/4 cup of cereal. He even refused pizza for supper which is one of his favorites. Today he had one bite of peanut butter and honey toast, about 2 Tbsp. of Applesauce to take his Prevacid with, one bite of his cheeseburger for lunch, and one bite of his jr. roast beef. He did drink down his chocolate Boost so that is a good thing, but it is still not enough calories for a day.

We are hoping that the Periactin will help stimulate his appetite and get him to eat more. As it is right now, he has absolutely no fat on his little bones, which makes it very difficult to give his growth hormone shots. We see the GI doctor in a month and will go from there.

Monday, August 8, 2011

Results from Our Week of Tests

As you all know we had a week full of testing a couple weeks ago, and we received our results on Friday so I wanted to pass those on to you.

Monday we had Daylon's Gastric Emptying Study. That went well, aside from being the longest hour of our lives. They fed Daylon some eggs that had something in them that reflects on x-ray (I think it was radioactive), after he ate them he was strapped to the x-ray machine board for an hour while the machine took an x-ray every minute for an hour. This test showed a normal gastric emptying time. Normal half-time emptying for a male is 50 to 60 minutes and Daylon's was 51. Yay!!

Wednesday's Endoscopy showed that Daylon's stomach was a little red and inflamed. They took biopsies of his esophagus, stomach lining, and the top part of his bowel, and also suctioned some juices from his bowel to test for different bacterial infections. The biopsy from his esophagus showed that he has reflux and needs to be on meds for that, so he will be starting a twice daily dose of Prevacid. The biopsy of his stomach showed chronic gastritis and was positive for H. Pylori bacteria. Daylon will have to be on high dose antibiotics for 10 days to kill this bacteria. He is taking 500 mg of Clarithromycin and 1000 mg of Amoxicillin a day. All of the tests they did for bacteria in the bowel juices were negative. While our GI was doing the endoscopy they went ahead and took some blood to run some other tests as well. They tested him for Celiacs, which was negative. A metabolic panel and CBC were also done, along with some other tests that we aren't really sure what they mean right now.

Friday's Sweat Test came back Normal, which rules out both Cystic Fibrosis and Schwachman Diamond Syndrome. Another YAY GOD!!!

In the midst of all of this we got the call from Genetics that Daylon's Microarray is showing something. What they found has never really been seen before so we are not sure what it means. They found that Daylon has a partial duplication of his Y chromosome that involves a gene that controls growth. He has more of this particular area of the Y chromsome than he needs, which would usually result in a bigger child and more growth, which makes Daylon's case odd also. They think it is possible that the duplication is close enough together that it is turning off that gene. We still don't know much about what this all means for Daylon. They are running more tests to confirm the duplication and then we will meet with them to go over all of the results and also find out from them what this all means and how he could be affected, along with what it is impacting now.