As most of you know, the boys have had a rough time over the past year with bleeding ulcers. The ulcers actually bleed into their stomach with so much blood loss that they have had to have blood transfusions and emergency Endoscopes (one at 2:00 a.m.) to stop the oozing blood. During this procedure they have had to go into the stomach through the mouth with a camera and have had to cauterize and put clips on the ulcer to get it to stop.
Evan had his first bleed when he was 4 and his Second this past October (we had no idea that he was having trouble until he passed out and collapsed on the floor in the dining room!) Aodhan had his first this past September (2 actually in September) and his 3rd in January. We have been ulcer free for 7 months!
I took Evan and Aodhan to the Pediatric GI yesterday and there is good news and bad news. Fist the bad news. Evan is still not gaining weight, in fact he lost weight again (apparently healthy 10 year old boys shouldn’t lose weight). I’m struggling with this because the kid can EAT. Last night he had:
Dinner – Chicken, noodles, corn. He ate most of his meal.
Snack – Cookies and Cream milk shake with extra crushed Oreos
Before bed snack – A big bowl of Frosted Flakes with whole milk.
Granted, he hasn’t had milkshakes every night, but now that he is still loosing weight, he will definitely be having them on a daily basis.
So, for the good news, well good news for us! The boys don’t have to be scoped any time soon. Dr. Ross is afraid to scope Aodhan because the last time he had an Endoscope, a week later, his ulcer bled (oh and for the record, if you go to a jam packed pedi. ER with a bag of bloody poop, you get to jump to the front of the line!). Dr. Ross would rather keep them medicated and not introduce any trauma to their stomach lining. I had asked about upping their medication prior to the start of school to ward off any undo stress. History has shown that the first bleed in both kids was right around 2 weeks after school started. This year, they are starting Middle School and it’s a whole new world. Current research shows that stress does not *cause* ulcers, but stress can *aggravate* them. Dr. Ross was confident that their current medication dose is fine. In fact, he would like to keep them medicated for at least the next couple of years with only one more Endoscope before he takes them off the meds. We need to bring Evan to the Pediatrician in a couple of months for a weight check, but we don’t’ need to see Dr. Ross for 6 months. The boys were thrilled to hear that and even more thrilled when he told them that he didn’t need to check their blood levels (needles! The horror)!
Keep your fingers crossed that they remain healthy once school starts and we remain “hospital free!”
Check it out!!! The tub is finally gone from our upstairs bathroom....5 years...that's all it took....5 years! Woot! Go Shaune!
Evan and Aodhan don protective eye wear!
Posts
