Hello, my name is Rene and I have a 4 year old son with 3/4 of his large intestines taken out due to HD at birth. He also has down syndrome. We just got back from bowel management at cincinatti children’s. On our final day, Dr. Levitt told us that our son was a good candidate for the Malone procedure. I’m not sure if he feels this way because of our son’s learning disability or because of what he saw when he examined him under anesthesia. He told us that since Evan had 2 pull-through surgeries, that his sphincter muscle may have been damaged and may not ever be able to potty train. But he couldn’t be sure of that yet.
Giving the enemas has been a huge emotional wreck for all of us. Since he doesn’t understand, I can’t explain to him why it’s important that we give the enemas. I can’t tell him that they are helping him with the severe rashes and frequent bm’s, so it’s very difficult. Maybe this is why dr. Levitt is willing to do the surgery at such a young age.
On a positive note, he also said that the ace malone procedure WOULD NOT interfere with regular potty training if Evan has the ability. This seems like a no-brainer decision to me. But ofcourse, is not!
From what I’ve read with my research, I haven’t found any children that have ended up potty training years after the malone and wondering if there are any children out there?
Also, can you tell me what your children (or yourself) feel about the catheder inside them and the enema going through them. Unfortunately, my son can’t explain these things to me and won’t be able to for a few years. All he can do is scream and tell me “all done” and struggle during the entire enema procedure.
I’d really appreciate it if you could provide me with some of your personal experiences, opinions or any information that you feel might help me in my decision for considering the malone procedure for my son.
Thanks so much for your time! Rene (mom to 4 year old Evan, LSHD and DS