I'm going to preface this post with the fact that most of it is boring medical mumbo-jumbo and it also contains graphic details about pee and poop. Read on at your own risk.
You might remember from previous posts that Elise has a condition called vesico-ureteral reflux. This is where urine passes from the bladder back into Elise's ureters instead of all out through her urethra. If Elise gets a urinary tract infection it predisposes her to kidney infections and kidney damage. Thankfully her case is mild, but we've really struggled this summer and fall with recurrent infections and some incontinence issues. We were finally able to get back in to see her Urologist yesterday to get a better understanding about what was happening and get a plan in place for how to deal with this.
First, I want to say that we've been dealing with this through Elise's regular pediatrician all summer. Three months ago I decided that we needed to get back to her specialist. I was told that I needed to repeat some tests prior to getting back into him. We tried to do that, but Elise couldn't tolerate the testing. After that, I tried for literally 1 month to get the appointment with the Urologist made. I talked to his scheduling office and at least 2 of his nurses detailing what the problems were. I was told that they couldn't do anything for me until urine cultures were faxed, or until a certain nurse was back in the office, etc. etc. Finally a got the appointment made, but had to wait another month to be seen. Well, the first thing the doctor does when he gets in the room is chastise me about not calling sooner and how they would have been doing all kinds of things if they had known what was going on. Seriously? I was fuming. But, I wanted to use my time with him to get answers not argue about his office staff so I stuffed my feelings down. Plus, he's a good pediatric urologist. I'd rather have someone who knows what he's doing, but has a bad bedside manner (he is good with Ellie). And, I did get my answers.
What we learned:
1. Infection thickens the lining of the bladder and predisposes to more infection. He suggested we go back on prophylactic antibiotics for a few months to try and break the cycle of infection. I've given in and said okay to nitrofurantoin. If she needs to be on it more than a few months I might request a change though. If Ellie gets pulmonary fibrosis as a side effect I will feel forever guilty. Only my pulmonologist friends will likely appreciate my issue with this medicine.
2. She is definitely having bladder instability and spasm. This may not be what caused the vesico-ureteral reflux, but is certainly propagating it. He stated that kids with bladder instability take an average of 2-3 years longer to resolve their reflux than kids who don't. So, we're also starting an anti-spasmodic agent.
3. Her bladder instability, spasms, and infections are all worsened by chronic constipation. We are going on a bowel regimen of fiber supplements. Her poop is supposed to be of a "toothpaste" consistency. There is actually a print out sheet that we were given with a scale of different levels of poop softness. It has pictures. It's hideous. "Toothpaste consistency" was more than I needed to know.
4. We go back in 6 months to reevaluate. At some point she will need to have the VCUG procedure that freaked her out and she wasn't able to complete the last time, but we can wait 6 months to a year depending on how she's doing and hopefully she'll be old enough to reason with better at that point. The reasoning behind this is because they do like to make sure that reflux resolves in girls prior to pregnancy otherwise it can cause problems.