We had a VCUG and Urodynamics a couple of months ago and left with a plan to increase cathing and record output (volumes cathing and amount of leaking).
The increase in cathing time we were not that great with, but most of the time we were about every 3-4 hours. At school it increased to every 2 hours; which means he is out of class for 45 min a day (3x 15 min). And we were still getting some leaking. Over Christmas break I recorded all output to have some data to bring.
I brought all of our information for our urology appointment and is showed that there is leaking probably about 80-90% of the time.
To try to stop the leaking we discussed options: in medication and urology procedure.
Oxybutynin is the medication of choice for neurogenic bladder. It is an anticholinergic medication and relaxes the smooth muscle of the bladder.
Gelnique is Oxybutynin in gel form. It is topical, which means we put it on his skin and it gets absorbed. Because it is absorbed in the skin and not in pill form we have noticed a decrease in side effects such as flushing, over heating, constipation.
Because we are currently using this already, the option we discussed is increasing the gelnique. It is expensive, and the more you increase the dose the increased chance of side effects.
Another option is to try oral medication.
We have used Oxybutynin in a liquid form (and ended up with a ton of cavities). And we discussed trying a pill instead of liquid form. But anything taken by mouth has increased side effects. My worry is that we are really good with our bowel routine. And I don't want to mess that up. To take oral oxybutynin he would have to take this medication 3 times a day, and we would have to offset the constipation with medication daily or every other day.
This isn't really something we want to do right now.
Oxybutynin can also be crushed and flushed into the bladder. This would be similar to the oral dosage (3x a day), but with less side effects because it is right at the source. It is time consuming and can be messy. In the end, it was not recommended.
There are other medications called Detrol. I don't know very much about the medication, other than it is used as an alternative to oxybutynin.
The other procedure options are more invasive and now the question is, what is more invasive? Putting a variety of medication in your body on a daily basis at a dose so that it will work. Or trying something else.
The other option (and one we are going forward with) involves general anesthetic in the operating room for the purposes of a cystoscopy. A cystoscopy in adults does not need general anesthetic as it does not involve any actual surgery (like incisions and stuff). But in a child, they do it with the child asleep.
A Cystoscope is a tube that goes into the urethra and into the bladder, the tube has a light and a camera and things (like a needle) can be passed through the tube to inject into the bladder.
The cystoscope allows the doctor to inject Botox into spots in the bladder. Botox is also known as botulinum toxin, a name that makes you take a step back. We are giving our child a toxin?! It is of course known most commonly for cosmetic reasons, by weakening facial muscles and smoothing wrinkles. But that is exactly what we want to do to the bladder.
Botox treatment for urinary incontinence due to neurogenic bladder in children is an approved use. It does exactly what it says it does. It paralyzes (relaxes the spasms of) the bladder muscles by injecting into the bladder in multiple places. This is done through the cystoscope.
The effects of the Botox is temporary and will need to be repeated about every 6 months. But as the effects of the botox starts wearing off then we can start looking at medications again. The botox injections means that all other medications can be stopped while the botox is working. I personally used Botox injections to treat my hyperhydrosis (excessive sweating) and found that it worked perfectly for 6 months, and the following 6 months it still worked but not perfectly. And by a year I was back to where I was.
Most of the side effects of the botox (difficulty urinating) we already cath, so it is not an issue. But infection is the most common side effect. I have seen some studies that recommended antibiotics.
The other option that we discussed was a Bulking agent. This means an injection (through the cystoscope) of a bulking agent, such as collagen at the bladder neck to make the bladder neck tighter. This means that by moving around and being more active (like at school) the bladder won't leak. If it looks like the bladder neck is open a lot, then they will do the bulking agent. This isn't something that would need to be repeated. If it isn't open and leaking, then they won't do the bulking agent.
I would hate to do it, and inject something and then not be able to advance the catheter. Because we still need enough space in the bladder neck to advance a catheter.