Today we went to the Urologist for my middle daughter. He is giving us a referral for outside our HMO for the Pediatric Urologist at the local university children's hospital out here. The reason for the referral is she has one kidney, recently had a kidney infection, and her ultrasound came back with a small change (my water on the kidney) than before. They will test her with a VCUG (which tests for reflux from her bladder to her kidney) and with a Renal scan. She had those tests done at 9 months before the removal of her kidney, but because of the current events, they are testing again.
We also have issues with bladder and bowel control. In addition, unrelated, I believe, she has issues with stomach pain and some minor behavior issues (repetitiveness, hoarding). But, she is a bright and beautiful young girl full of enthusiasm and frequently given to make me laugh. A gluten free diet has helped significantly with the stomach pain and bowel issues as well as with the behavior. She has tested negatively for Celiac and for an allergy to wheat, so the doctors look at me skeptically when I tell them she is gluten free. But, every time we give wheat a try again, her behavior accelerates (she hoardes food a lot and other things like pieces of paper, she doesn't listen, she sings or talks repetitively), plus her gut hurts her more.
Gluten free did not completely improve her bowel and bladder issues however, but it does seem to impact them. I'm not sure why. I just know that every time we go back on we have more issues. Her bowel and bladder issues likely stem from her kidney issues. As I shared in part one of this story, her #1 kidney had a blocked ureter and was basically useless from before birth. They took it out shortly before age one. Her #2 kidney looked basically alright, a little hydronephrosis (water on kidney) but that is to be expected, I have been told, when a kidney has been doing the work of two kidneys. Anyhow, anytime the nerves are not quite right with the whole bladder/ureter/kidney thing down there, it makes it more common to be slow to develop sensitivity in the bladder and the bowels. How I wish I fully understood this from the beginning and could do things differently with her. Sure, I understood, some kids aren't ready for potty training by age three or three and a half, but four or five?? My pediatrician's suggestion (and the suggestion of other doctors) of giving her Miralax only made things worse. But, it didn't feel as if they believed me.
At about age five and a half, after trying gluten free and seeing some success, but not a lot, I read an article in Spectrum Magazine (a magazine about ADHD, Aspergers and Autism). It was an article on potty training an Asperger's child. It was the first article that made complete sense to me. Some children, don't have the normal pressure and sense to want to potty train. You need to make things really desirable for them and you need to have a lot of patience and realize it's normal for them to be four, five, or six when they potty train. I can't remember every piece of advice the doctor had in that article, but I remember the one that helped us... You set up a reward system...not just stickers (I think that's what doctors think I did when I tell them I set up a reward system). You give the child something tangible (tokens or something like that). I bought squares from the learning palace. Every time my daughter has success I give her a certain number of tokens. More for staying dry all night or for going poo poo, than for pee pee. And lots of praise and "I knew you could do it"'s. She puts those tokens in a jar (which believe me to my daughter holding the tokens is essential) and when she fills it she gets to go out with me and buy something (usually something around $5). She still needs this system. One day I hope she will have grown out of it. But, now it is essential for us.
So, despite her best efforts, my middle daughter still has accidents...mostly wetting at night and an occasional daytime wetting accident. Sometimes she gets a little staining on her underwear. But, this is soooo much better than a year ago. I can't tell you how hard it was to figure all this out and go through this. Who else experienced it? Who wanted to talk about it? How unacceptable is it socially for a six year old to have potty accidents all the time? When she goes to longer classes (more than an hour...like art class or her dance class party or perhaps vacation bible school)...it's challenging, because I really can't expect the teachers to send her potty once an hour.
Well, that is my daughter's story. And, I love her. Yet, I've struggled with this challenge and at times I've been mad. That's life, I guess. Neither she nor I are perfect. God has grace for both of us.