Botox Update and Problems

We've been having some bladder and bowel issues lately.

Nick had his botox and deflux about 2 months ago. And we were really, really happy with it. For about 6 weeks. Then at Easter weekend I cathed Nick and got all brown urine. Completely brown.
My first thought was a bladder infection, so we started some d-mannose and pushed fluids. And it started clearing, but then he was leaking at home and school. He also started vomiting and had a couple of nights when he would get a really bad headache that would last a couple of minutes and go away.

So I knew that something was going on.

I wasn't really sure what it was. Was it bladder or bowel related?
Had the deflux failed (and that was the brown liquid) or was it a bladder infection. Was it constipation causing a bladder infection? Was it all of the above?

This past weekend Nick started getting constipated and his MACE was starting to leak (which only happens when he is backed up). And his bladder was leaking too, soaking through everything.  So we did what we usually do and gave him more Restoralax. When his MACE stoma started leaking really bad, and Nick was starting to not feel well I thought to clear  him out again with another flush.

So I started flushing small amounts at a time (so it was a mini flush, not a full one). But then nothing would come out. And as I sat in the bathroom with Nick I could see him getting sick. He started throwing up and complaining of a headache every time he put his head up. Then he got really tired and only wanted to sleep.
Of course my mind is flashing shunt! But I also know that the shunt drains in the belly. And if the belly is full (with poop or fluid that won't go through) then the shunt can't drain.

I kept pushing more fluid in and giving it some time (about 300 mL at about 50mL at a time) But after 3 hours I was reaching the end of my things-to-try-at-home and so I started packing my hospital bag and getting help so we could head to the hospital. My thought was that he had a blockage and my attempts at dislodging the blockage were not working. Of course it was the weekend, and all of my medical contacts were not there. But I did email his urology Nurse Practitioner.

Kyle and I sent Katheryn across the street to get my father to come and either drive us in, or stay with Katheryn. I collected the puke bucket and lots and lots of padding incase things started moving in the car.

But as soon as my father walked in the door, things in the bathroom started moving. And whatever blockage passed. Nick started feeling better, but was still really tired. He slept for about 3 hours and woke up feeling a lot better.

It was a pretty scary time for mommy. I didn't know if we should have gone to the hospital sooner, or even what hospital (I later talked to one of the pediatricians at my work and he wouldn't have been comfortable, especially with the shunt symptoms).

In the end we made the right decision, because everything did pass. But during the 3 hours when I could see Nick getting worse and worse I felt so helpless!

The shunt symptoms went away, so everything is draining from his shunt normally again. What I am hoping is that all of the original bladder symptoms will go away now that the bowel is better. But if they don't, I think we are going to have to say the botox is no longer working and start the Gelnique again. This is disappointing, because we really only got a good 6 weeks out of it (and I was hoping for 6 months).

Post-Botox

It is about a week after the botox and deflux and we are very happy with it!

No pain or infection afterwards, which was one of my worries.

And today we got to do something that we have never done before

Real underwear. No pad, no leaking.

Hopefully it will last!

Botox Day

Nick had his botox today. So it was back into the operating room. But really, I have been trying to use the language "procedure".

We actually had an afternoon appointment this time. So we spent some time waiting and distracting Nick from him empty tummy

When it was time to be checked out by the nurse Nick was very serious.

Pretty soon it was time to get ready and go in! We were actually an hour early

We got some funny faces before heading inside.
I got to go with him, and be with him until he was asleep. He started to get nervous with the mask on his face (which we have practiced). But no tears before he was asleep and I left.

It took about an hour. Kyle and I went to do some window shopping and eat lunch. And we were just on our way back up when we got the call that he was done.
Dr Lorenzo came out and talked with us. He did do the deflux, but isn't sure whether it will stay or not.
Nick was beginning to wake up when we got into the recovery room. He sucked back his drink and woke up really well and pretty soon it was time to head out.

Nick wasn't very happy when we were leaving, but not pain. Just grumpiness. He really wanted to eat some fried macaroni and cheese. But we didn't think that was such a great post-anesthetic meal.

Now we just have to wait and see how it works!

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