Hi,
My name is Megan Dean. Our 18 year old son, Nick, lives with the effects of Downs Syndrome. Nick does not have a lot of language, so that is why I am
writing for him. Back in 2018 after much sickness, and a G.I. bleed, scopes and surgery, Nick was diagnosed with Crohn's disease. Nick also has an allergy to: gluten, dairy, corn and eggs. At one point, his Cal-Protectant was up to 2400, and now is down to 450 due , I think, to his monthly Remicade infusions. (The G.I.doctor, would like to see Nick CalProtectant level to be down to 250). Nick also takes two doses of Omeprazole (acid blocker)a day, but I am wondering if that is causing his hunger, because he needs acid to break down protein. Maybe nutrients are not being absorbed properly? Maybe he is malnourished?
When Nick was in Pediatric G.I. (He just turned 18, this last October), we had a great doctor, but now that Nick has been moved to adult medicine, it seems that he is not getting the same attention. He also recently had and Intussusception, a fold in his small intestine,
which I am told can be fatal. It is gone now, and may, or may not come back.
But the most recent change, is that Nick is constantly hungry.
Right now, I am giving him small meals every hour. I set the timer, so he knows a small meal is coming. This seems to be helping. In these small meals, I include a healthy fat, avocado, a small amount of protein (salmon), a a bit of "Cocojune" dairy free yogurt.
Because Nick does not have a lot of language, my husband and I are mostly reading his body language. His last vomiting spell was on the 6th of June,
which happened to be 2 days before his Remicade infusions. It wasn't too bad, and he was able to go to his infusion.
Anyway...I am grateful to be on this forum. Sometimes, I feel as if I am living on the edge of my seat, wondering how Nick will be doing each day.
We appreciate this support,
Megan
My name is Megan Dean. Our 18 year old son, Nick, lives with the effects of Downs Syndrome. Nick does not have a lot of language, so that is why I am
writing for him. Back in 2018 after much sickness, and a G.I. bleed, scopes and surgery, Nick was diagnosed with Crohn's disease. Nick also has an allergy to: gluten, dairy, corn and eggs. At one point, his Cal-Protectant was up to 2400, and now is down to 450 due , I think, to his monthly Remicade infusions. (The G.I.doctor, would like to see Nick CalProtectant level to be down to 250). Nick also takes two doses of Omeprazole (acid blocker)a day, but I am wondering if that is causing his hunger, because he needs acid to break down protein. Maybe nutrients are not being absorbed properly? Maybe he is malnourished?
When Nick was in Pediatric G.I. (He just turned 18, this last October), we had a great doctor, but now that Nick has been moved to adult medicine, it seems that he is not getting the same attention. He also recently had and Intussusception, a fold in his small intestine,
which I am told can be fatal. It is gone now, and may, or may not come back.
But the most recent change, is that Nick is constantly hungry.
Right now, I am giving him small meals every hour. I set the timer, so he knows a small meal is coming. This seems to be helping. In these small meals, I include a healthy fat, avocado, a small amount of protein (salmon), a a bit of "Cocojune" dairy free yogurt.
Because Nick does not have a lot of language, my husband and I are mostly reading his body language. His last vomiting spell was on the 6th of June,
which happened to be 2 days before his Remicade infusions. It wasn't too bad, and he was able to go to his infusion.
Anyway...I am grateful to be on this forum. Sometimes, I feel as if I am living on the edge of my seat, wondering how Nick will be doing each day.
We appreciate this support,
Megan
