A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Tuesday, January 12, 2016

Bladder plans

We had our follow up with urology from October.
We left at that time with a plan to increase cathing time and to record outputs. I didn't really want this to be the plan at the time. I wanted more action, to actually do something to prevent leaking instead of emptying more often.

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. We met with Dr Lorenzo's nurse practitioner Abby and she spent a lot of time discussing options with us. Because Nick is leaking probably about 80-90% of the time.

So some of our options are medication increase or changes.
Currently the only medication Nick is taking is called gelnique daily and restoralax once a week.

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 (one of the reasons Nick has had so many cavities). But at 6 he might be able to tolerate a pill form. But the pill form increases side effects. My worry is that we are really good with our bowel routine. And I don't want to mess that up. Currently Nick takes one medication a day and one medication weekly. 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, Dr Lorenzo didn't recommend this.

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.

Then we discussed other options.
These are more invasive options 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. (Similar to when Nick needed general anesthetic in the operating room for his dentist work last year).

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. When discussing it with Abby she said 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. We talked about this with Abby. She said that 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.

So these are all of our options.
I spent a lot of time talking back and forth between medication and procedure (I don't really want to use the word surgery). But we left with a plan.
Temporarily increase the Gelnique to 2 packs a day and wait for a operating room time (hopefully within 3 months). That way we are doing a little bit of both options. Try medication for a bit while we wait for the procedure (which we can cancel if we want to).

One of the funny things about the appointment is that everyone kept apologizing for taking so long. It took us 2 1/2 hours to get to Sick Kids for our 1030 appointment, we waited about 20 minutes in the waiting room and then just over an hour for our appointment. I laughed and said that it took longer to get here! Then it took another 3 hours to get home.
We do take public transit (Go Train and Subway... except our stop for Sick Kids isn't accessible), and we walked back down to Union Station and stopped to eat on the way home. This is why an hour appointment takes all day

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