I mentioned in a previous blog that shunts and bathroom stuff are the 2 topics most discussed with SB parents. Now it's time to talk about the bathroom stuff... well a little bit anyway. Leah has a spinal cord injury, and with all people who have spinal cord injuries, she doesn't have full feeling or control or function of her bladder. This is because the bladder and bowels are controlled by your very lowest vertebrae. When there is an injury to the spine, everything below that injury spot is damaged, so a higher injury means more parts of your body will be affected.
The bladder is a muscle. Like all muscles, it has to be trained and taught how to work. In a normally functioning person, you drink water, the bladder flexes to hold that liquid in, and you then contract the muscle to push the liquid out. In a person with a spinal injury, the bladder will act in 1 of 2 ways: either it will always flex to hold liquid in, or it will be limp and always allow liquid to seep out. When it's the former, the liquid can back up into the kidneys, causing reflux and damage. When it's the latter, the kidneys will stay healthy but the person will always be leaking. Both situations are a no-win for someone over the age of 4 who wants to be socially dry. Luckily, there are options available for people in both situations to control the bladder.
Both situations also mean that UTI's happen frequently because either way, the bladder doesn't empty itself fully. When urine stays in the bladder for too long, bacteria grows and infects the bladder and urinary tract... hence, Urinary Tract Infection. Even the tiniest, tracest amounts of urine can cause a UTI. UTI's cause a host of symptoms, like fevers, vomiting, lethargy, and can be painful, even in kids who can't fully feel the sensation of having to pee.
Leah's first UTI was last March. She spiked a fever, she was puking, and overall felt really awful. I could tell that she wasn't herself. I had remembered Dr. Marker telling me how common UTI's were and his nurse had given me a kit to take a urine sample, and a prescription antibiotic to start her on if she showed symptoms. That started an 8-month cycle of UTI's that went something like this: get a fever, puke, and be sick... send in a sample... take antibiotics for 10 days... be healthy for a few weeks... get another fever, puke and be sick. This happened almost like clockwork every 4-6 weeks. 6 UTI's in 8 months. I wanted to puke!
During this time I was trying all sorts of home remedies, giving cranberry juice and slathering coconut oil all over her bottom. Every month she still got one. And every month she had to be on antibiotics. I don't like having to give medicine as it is, so going on her 6th round of meds in as many months was really upsetting. That's when our cranial-sacral therapist told me about an unusual remedy for UTI's... that actually worked!!
Now I use Shak.lee's Bas.ic H cleaning solution in her bath water. It's a regular, home cleaning product that I found on amazon dot com. The way it works is that it makes the water lighter than water, or in other words, more slippery than water. It cleans out the bladder and urinary tract and empties the bladder of any leftover urine that's been sitting in there before it can get infected. It has absolutely done wonders for Leah. I put it in her bath at least twice a week, and in the mornings after I use it, her diaper is really full and stinky, so I can tell that it's working. Her last UTI was over a year ago.
I'm sharing this in case there are other parents out there who are battling with this like we were, and can at least give it a try. Around the time of her last UTI, I started to think that we can't go on like this anymore. She couldn't be on a path like this, where she's constantly sick and on antibiotics. It just isn't good for her, or us. I was thinking that we'd have to start the process to catheterize her, and I just wasn't ready for that. Now, we still don't, and her scans show that her kidneys continue to be in good health, so what we are doing is working. Now that she's 3, it is time to start thinking about getting her out of diapers, but now we can do that on our time, when we feel that it's right, research all our options and fully understand what that means.... and not because her health was on the line.
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