Recently Oliver, who just turned 3, has been having issues with urine retention. He'll go about 24 hrs without peeing and then usually we can get him to go by putting him in a warm bath. Some days he pees a few times with no issue. This morning our little bath trick didn't work and we're bringing him in to see his pediatrician to assess him and whether he needs a catheter or not.
He's been on a medicine called Robinul for about a month to help with his drooling. He kept aspirating his drool and getting pneumonia. Since starting the Robinul his lungs have stayed perfectly clear, but one of the side effects of this medicine is urinary retention and this peeing issue only began a few weeks ago so we're not sure if it's the Robinul or disease progression. Damage to the autonomic nervous system can result in a "neurogenic bladder" where his brain doesn't communicate to the bladder that it's time to "let go". He just turned 3, we thought we'd have more time before this began to happen from a neurologic cause. But maybe we were wrong. Some children with MLD never need catheters and some need them daily. We'll see what the Dr says. We'll probably drop the Robinul for awhile to see if it improves, I hope it does, but it's a shame because it's worked so well with preventing the aspiration pneumonia. We'll see.