Spina Bifida Clinic

It was time for spina bifida clinic again!

Nick got to show off his crutches skills!
And of course impressed everyone!

Clinic Day is usally a long day, and so we came prepared to spend the day in the waiting room. But we actually spent most of the day in an exam room. So we could spread out our stuff.

We saw physiotherapy, who was very impressed with his walking. And orthopedics. He got the all clear for scoliosis. Nick has had a bump at the bottom of his cyst scar, I find it there sometimes and then not there at other times. I asked if I should be concerned from an orthopedic standpoint. But he didn't think so.

We saw occupational therapy. I had some questions about Nick's wheelchair, and the possibility of how to look at getting the FreeWheel. There isn't any funding for it anymore. So we'll keep that in mind when we are looking to buy it. She had some suggestions for the wheelchair, but we will follow up on them with Grandview OT. We also talked about Nick's computer and some suggestions for programs to help with typing.

One of the things with the SB clinic, is that you get to see everyone, but you need to also figure out who to talk to, to get some answers. Or at least know that you are on the right path.


When we met with urology we talked a lot about what we have been doing. After Nick's spinal surgery the urology issues we were having improved. Botox right now is another option, but not something we want to explore right now.
But the thing that got me excited was that I FINALLY had someone to recommend and actually suggest putting the PEG in our solution at night! I have asked this many times and have been told no.

We also met with Dr Church. She is my favorite doctor! Not only is she passionate about caring for Nickolas, but she listens and respects me. Both as a mother, an expect and a nurse. In fact, she sent her residents out of the room at the end of our assessment so that we could chat.

During our appointment we talked about Nick's overall health. She asked about school and Nick's IEP, I said that seems very basic to me, and I'm not sure what to do about it. I never even thought about his IEP or I would have brought a copy with me.

So I'm getting a copy of Nick's psycho-education assessment and his IEP to see if there are areas that we are missing that we can help assist him in his learning.

Overall it was a good day. Nick is 114.6cm, which is 17%ile, and his weight is 22.5kg, which is 42%ile. So he is shorter, but we know that this is most likely, and his weight is ok, if a little under but not concerning.

We go again in a year, but everything is looking good and stable.

Questions Answered and a Plan

We have had more appointments for Nickolas so far this year than we had all last year (and last year our SB clinic was divided into 3 days). Katheryn has been feeling the difference and has asked to come to an appointment with us.

We had warned her that it wouldn't be all fun and games. That there would be lots of boring waiting.

We were going to have a busy day. With neurosurgery, ultrasound, urology, bloodwork and visiting another mommy and son at Sick Kids.

We made this appointment with neurosurgery to review all the questions I had for Nick's upcoming surgery. I haven't been having so much second thoughts about the surgery as much as questions about the surgery. I can see Nick getting tired more easily as he continues to walk so well with his crutches. But I have also seen his legs do some funky things to do this. Instead of just turning his foot in, he is turning his leg in and moving his leg from his hip.

We met with a fellow first who went through an assessment of Nick and asked some questions before Dr Rutka came in. When Dr Rutka came in I went through all of my questions written down in a book on stick-it notes.

First of all he is not going to do a spinal shunt. There will be nothing left inside Nick. I think I heard this the first appointment, but obviously I was wrong.

• This is an example I could find online. Nick's cyst is a lot lower down than in this picture, below his shoulder blades. The cyst is within the spinal cord and is pushing the spinal cord out of place. The mobility difference that we are seeing is because of this.

Dr Rutka explained to us what he will be doing for the surgery.
He is going to fenestrate the cyst. Pretty much this means put some holes in it (in medical talk). This will allow his body to absorb the fluid.

For the surgery he will remove 2 of the spinal processes (the pointy part of the back) to get access to the cyst. But he will put these back, he called it an laminoplasty. And then it will heal.
The bones of the back are meant to protect the spinal cord, and the spinal cord is what he needs to access.

He will have about a 2" scar in the middle of his back, between his original scar and shoulder blades. And he will use absorbable sutures (not staples) so nothing has to come out.

We also talked about tethered cord. He felt that tethered cord surgery was not necessary at this time. He said that tethered cord was a much more invasive surgery and he wanted start with the least invasive option at this time and reassess after 6-12 months.
That made us feel a lot better.

Some of the other questions we got the expected answers. Miss the week of school, no swimming for 6 weeks and hospital stay for 3-4 days. He said home Mon or Tues (which is longer than 3-4 days, so we will have to see), but Nick has never gone home on the earlier days or expected discharge.
It all depends on how he is doing. There are risk of complications as well, including infection and leaking.

Katheryn and Nick spent all the time playing with all of the toys and having a great time.

We also talked with the surgical nurse about what we needed to do before surgery as well. I knew we needed bloodwork done. But when we had surgery other times with urology we also had to have an anesthesia consult and sign off by his pediatrician. She said they really only doing it if there are multiple disciplines involved.
So what this really means is that urology cares about neurosurgery (and wants everything signed off), but neurosurgery doesn't care about urology. Very simplified of course.

We had to hurry to get to his ultrasound appointment, but surprisingly we made it on time.
Nick was very interested in the ultrasound. He asked if he could see what was in his belly button. So after they looked at his kidney's we looked at his belly button. We couldn't really see the MACE, but we could see how bowel moving, and I teased him that I could see his Ninja Turtle cereal moving around in there.

Urology came afterwards. We had hoped to talk with the urology NP to come up with a plan for our hospital stay, but she wasn't there. We met with Dr Lorenzo about the Botox, he agrees that it was the deflux failing in April. But we have restarted the gelnique and he has been pretty dry again.
So at this time we aren't going with anything else surgical with urology. But in the future may be some other ways to tighten the bladder neck (which I have always believed is the problem).

Then it was time for some lunch!
I don't think that we convinced Katheryn that appointments are very boring...

Finally Nick had to get his blood taken. He was the most nervous about this. He has been asking questions, like how much blood with they take, and will it hurt. But he was very, very brave. He sat on my lap and I held him. His whole body tensed up when the needle went in, but after that he was very good. He even took a peak at it! It was only at the very end that he said that it hurt.
I told Nick how brave he was. But he told me he wasn't brave at all, because it still hurt. I gave him a huge hug! He was so brave!

After all of our appointments, it was time to make it home for a family nap!
But we all feel better about the surgery and our plan.

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

Urodynamics

We have been trying to get some answers regarding Nick's bladder and leaking. We are getting some additional tests about Nick's bladder after clinic in July. So today we headed out to Sick Kids.

We are collecting information about the bladder so that we can make some decisions for next steps.
We had 2 tests. VCUG where they took some x-rays of the bladder when it was full of contrast and as it emptied. It takes about 15-20 minutes. It gave us an understanding of Nick's bladder capacity.

Then it was Urodynamics. This test is a little more involved, it measures filling the bladder with fluid and measuring what the bladder does. It goes very slow, becuase it is looking as bladder movement and spasms it is important to stay still for most of the time, but then also they asked Nick to cough to see if there would be any leaking.

Nick never wanted to cough when it was time. This was something we should have practiced ahead of time, but I never thought about it. They looked to see what the bladder would do when it was completely full. Nick doesn't usually feel when he bladder is completely full, but after his bladder infection a couple of weeks ago I think he recognizes what he feels.

When the bladder was  full Nick got very uncomfortable and started crying. The good news is that even though it was full, it didn't leak. Now that was with Nick lying down and coughing, not as he is running around and being a kid.

After the tests we got to wait to see the doctors.
Nick and I found some things to distract ourselves with. Like an Avengers Uno game.

And some homework

In the end we didn't really leave with a plan. I had wanted to talk about how to get the bladder leaking to stop. But the tests showed a bladder capacity that was normal and no real leaking when it reached the capacity. So it didn't really help us get some answers.

What we left, it was with a plan to cath every 3 hours instead of every 4 and to measure output for a couple of days and have this information with us at our next visit in January. I'm not really happy with this, but at the same time it isn't any type of surgery. So I guess I am happy.

We talked about what our options are as well. There is botox, injected into the bladder to prevent spasms, but from the tests that doesn't seem to be the answer, because the bladder didn't spasm. The other is a bulking agent, which it put into the mouth of the bladder and bulks that part up so that there isn't leaking.
When we talked in July they mentioned that it is considered to be a surgical procedure (operating room, general anesthetic). Not because it is an operation but because it is an invasive procedure on a 6 year old boy. Which is acceptable.

So our plan right now is to cath every 3 hours and as we get closer to January start measuring and have some actual data to bring to our appointment. And then go from there.

Usually when we go downtown to Sick Kids we go to one of the fun attractions. But this was a really busy week (big stuff doing on tomorrow), so instead we just visited the Disney store.

Captain America was very happy with that plan!

Clinic

We are starting to get into our clinic-heavy time of the year.

Our spina bifida clinic has been divided up into individual appointments, which makes a very long day into 2 long afternoons (which are on a Friday of course).

We had our appointment with Dr Church, Nick's developmental pediatrician the first week. It went well, he is doing great (of course). We talked about Nick's MACE, which is working well, and his bladder leaking, but our urology appointment was the following week. Dr Church (who we love, and who also has spina bifida) says that since we have bowel continence, we should try what we can for urinary continence. We are close, but not there yet.

We talked about the increased bracing, which we will follow up with, with orthopedics in the fall and neurosurgery next month.

We talked about Nick's diet and fluid intake, skin integrity and any other concerns. Nick has been getting so much better with drinking water, which has helped with the overheating he used to get (and switching from oral ditropan) Nick got to steal some of my iced cap after drinking his water.

We also talked about self care and independence. At 5, almost 6 Dr Church felt that he was old enough, with enough dexterity to learn how to self-cath. So that is our goal to be ready for the start of school. Nick was very receptive to the idea and solemnly told her that he would learn. My concern was about bladder infections. But she said that we can tolerate a couple of infections for him to get his independence (and we haven't had a UTI in a long time)

That was one appointment down. Everything is good.

I wasn't able to go to the next one, the urology appointment, but Kyle was there and I gave him a list of stuff that I wanted him to ask. To get that bladder leaking figured out. Botox is on the top of my list, or maybe increasing the gelnique?

So Kyle went with Nick and we came out with a plan. The 2 treatment options involve general anesthetic. Which is more invasive than I thought it would be. The options are putting in a bulking agent, to bulk up the ureter so it doesn't leak or botox that will relax the bladder to keep it from spasming.
Both are options that do different things for the same symptom.
The other option that we have is do some tests to see why we are still getting leaking. This, of course is what we want to do. Why treat blindly when we can try to determine what the best action is.
So in the fall we are going to do a VCUG and urodynamics study and then come up with a plan after that.

We also asked about increasing the gelnique (which is a bladder relaxant) but urology said that he was at the upper end of the dosage. So that's not an option.

I'm hoping we can have the tests scheduled in September so that we can get our plan in place. And then the last part of our clinic in the fall.

A Rough Evening

We've had a bit of a rough go of it this evening.

Nick's pain was good, until it started to run out and then he really wanted me to be with him. He started to notice an IV poke in his right hand (a red dot), the IV in his left hand, he didn't want to move or pee or do anything.

That was fine, I sat by the bedside and just held his hand.

We did some of the activities recommended for distraction
Blowing bubbles, reading and watching his favorite movie.

The bubbles were not a big hit.

His incision has been oozing.
The dressing they originally put on was a 4x4 folded gauze held in place with a strip of tape. That bled through. So they replaced with with a couple more strips of tape that bled through, so a tagaderm with gauze (a large clear bandage). That bled through. Then pressure dressing tape, which bled through.
Doctors had been in to see through the evening. It seemed that it was the mucosa or lining of the appendix is friable (which means that it bleeds easily), so it was oozing blood. Pressure applied to it would help, so they "kept and eye on it"

Of course it hurt Nick every time they touched it and pressed on it.
The final result around 8pm was for 2 doctors to come and apply pressure manually and give a vasoconstrictor (to help clamp the vessels) to try to get the oozing to stop. Nick had had enough, I tried distraction and calming techniques that labouring woman had taught me. We could distract him by counting and telling stories about what was happening on his favorite Backyardigan show.
But in the end he was crying for it to stop and for us to go home. He didn't want an operation anymore.
Once they stopped he calmed down quickly.

I have a picture of what it looks like. But I'm not going to post it yet. I think this is an isolated occurrence to Nickolas and it won't do any good for 'teaching'. I might do something before and after.

Right now we are problem solving ways to apply enough pressure to stop this bleeding. She packed it, then put a bunch of gauze over, but we needed more pressure to help stop the oozing. His nurse and I worked together, and as a good labour and delivery nurse, we did a nice c/s pressure dressing, (think hip to hip thik white tape, pressure dressing.)

They wanted to use the elastoplast, but I'm pretty sure it has latex in it.But Nick got some morphine and he says that he is all good. He actually slept through the nurse and I working together for the latest pressure dressing.

The docs will come back around for rounds in the morning and I'm hoping we will have this little set-back behind us.

Thanks to everyone who continue to wish us luck and a speedy recovery! The nurses here have been great. We've had all of the charge nurses and experienced nurses as well as all kinds of level of doctors (residents and fellows) in to try to get this all fixed up.

A mini clinic

We've had some issues with Nick's bowel routine, mostly in August and September. We have had a number of instances with constipation, that required a number of different tricks up my sleeve, over a week or so before we got over it. So I wanted to come in and see someone. Preferably months ago...

Yesterday was the date (finally), I had been trying to track our progress, but when Nick started school they haven't been very good letting me know if he was clean. And so I've been hesitant to send him without diapers (he is also wet a majority of the time).

I thought we were only seeing urology, who deals with all of our poop stuff. But we actually saw a bit of everyone!

Ultrasounds show that the kidneys are all good.

We had a couple of issues that I wanted to discuss.
What can we do to clean him out? Really clean him out. Can we adjust the solution? What should we try?
The one option they mentioned was the MACE, but we are still not there.

I asked about the Cincinnati program, with serial x-rays and adjustments to the enema solution. I couldn't get them to accept to do something similar, but we did get an x-ray to see where we were.
And Nick was backed up. So all that we have been able to do was clear the closer part, and the problem we've been having (getting nothing and then getting constipated) is because the purpose of the enema is to clear everything, and we weren't getting there.

So we are going to increase his PEG to get everything moving, and then really clear that out.
That is the plan.
We're going to wait until we have a bit of time (Christmas break).
When I asked about what time of solution to use (currently we are just using normal saline), we were given the ok to experiment (since I have really been doing that myself anyways).

I also wanted to see what they thought about the fact that Nick is wet more often. Urology discussed increasing his ditropan. I'm hesitant to do this, because of the side effects of the ditropan. But there is a patch.
A ditropan patch that we can try
You replace it twice a week and it is more effective.

My questions is why wait? Why haven't we been using this before?
Not quite sure, but we are going to try it out now.

So we have a plan.

OK urology figured out

We got to talk with psychology. Touch base and see how we are doing. The difficulties we had with Nick when we were away, what we need to do with school and any testing if we need it.
Right now, waiting on any testing, and write the attitude from October off as a change in environment (but if it happens again, contact if we need it).

We also had the chance to see our physiotherapist. Nick's original one, the one I really trust.
And so I talked to her about our recent concerns with Nick's braces.
Our school PT wanting to keep the KAFO and even more brace, and I'm not very happy with it.
Coming out of our conversation with her (which happened just by seeing Kim in passing and spending 20 minutes with her)
She answered our questions about his feet turning in. And my question about Nick's braces.
If he can walk without the 'K' then leave it off.
If he can't walk without the 'K' then he needs it.
I was very happy with that plan.

Then we were really ready to leave.
And Dr Church, our developmental paediatrician finds us. Did we know we were supposed to be seeing her as well? Oh. Oops
Nick and Kyle were all ready to be out the door.
So we talked quickly about our plan. We have her contact information, and will contact her if needed over the holidays. And follow up at our regularly scheduled appointment.
I definitely think I will go directly to Dr Church instead of running around in circles that I feel we have been doing since we identified we needed help and had some problems in the summer.

So a quick clinic got us a plan and direction and hopefully we are moving forward!

We also had the chance to quickly catch up with another family (but only quickly)

Spina Bifida Clinic - part 1

We had our spina bifida clinic on Friday. This is part of our crazy, crazy, super crazy month of July! It happens every 3-6 months or so, when we cluster all of our appointments. So for a couple months we seem to live in the hospital or clinic.
Nick is happy to just sit in the waiting room chairs like a big boy!
Get used to it baby boy!

And we brought lots of things to do! And tried to keep things a little fun while we waited...

and waited....

and waited!
I think the waiting may have turned Nick a little goofy!

Nick totally rocked the developmental pediatrician!
Lots of smiling and interaction, even a couple of babbling words. And waving good-bye (once she left the room). And we have some goals to work on more words. She suggested we try animal sounds! Sort of like cheating at making words!

This is Doctor Church with the spina bifida clinic at Holland Bloorview. Not only is she easy to talk to, friendly and great with the kids! But she has spina bifida herself! How cool is that?!!!

We made it through pediatrics, kidney ultrasound and tried to fit a quick trip to orthodics before urology.

Then it's back to more waiting. And fooling around!

And trying to sleep - mainly because Nick doesn't like to nap when we are out. He didn't actually sleep. More like lay his head down, and then pop it back up and ready to go!

That's not working! So let's try to escape!

And pull out the bottom of my distraction activities! 2 new books!

And we'll round it out with some standing!

Nick's newest favorite word - uhoh! That's a word right?

Nick had the opposite of white-coat syndrome with the urology resident. Every time she left the room (to get an answer for a question I asked her) Nick wanted her back! Poor resident was asked about starting a bowel routine, increasing ditropan, changing the mode of delivery (what about right into the bladder?) and a prescription for the UTI.

Then she said she was going to come back so we could problem solve why he got a UTI. What?! What is there to problem solve. He is cathed regularly for the last 20 months, he's had 1 UTI (without fever or crankiness) I'm pretty happy with that.

Over all, Nick checked out well for everything. We got some antibiotics (finally) for a UTI Nick has been fighting since last week! Not happy with my home pediatricians response time to that one! AND I signed our family up for another research study. (Ask me to participate in research and I'll jump at it!) I have to read it over, but I'll blog about it later (it is for the drug company for birth control to add folic acid, and the experiences of living with a child with spina bifida).

One thing that I like about the clinic is the ability and opportunity to chat and socialize and network with other families. Now I should add that I'm a touch social. I'm not quite sure how that happened. I used to be the shyest person.

During various waiting times I was chatting with Shauna, who is the representative for the SBHAO who tries to be at all of the clinics. Thanks to her I got to connect with 2 new families who live in Durham region by us!
She connected me to a family who lives in Bowmanville and have a 2 month old! I think I might have talked their ear off a bit!
I had also talked to Shauna about a family in Newcastle who had a HUGE SWWR walk that I was sorry that I missed. And she wrote a book that I just ordered (so excited, can't wait to get it!) It was amazing to watch her 4 year old daughter RUN with her brothers!

That's what I love about the spina bifida clinic!

Follow up - Urology and Ditropan

Last week was a crazy week and so I didn't update as soon as I'd planned. Thought I'd put up a water picture, since we are talking about urology (pee medicine). This is Nickolas discovering that if he dumps the water from his sippy cup out, he has a whole new water toy!!!

He got totally soaked - but it was worth it!

We were at home for 3 days, unpacked, cooked, cleaned and went to appointments, then packed again and and back up to the cottage. The kids don’t seem to mind the busyness. We were back at Bloorview for another physio appointment – we go every week. 1 hour there, 1 hour physio and 1 hour back. I really like our physio, I’ll be really sorry when we get accepted to our local children’s rehab, but I will not miss those 3 hours every week! But I will really miss our physio – she actually makes it worth those 3 hours.

When we were there we also got to talk to Julia, Nickolas’ nurse. She helped to clear up our ditropan questions. She was really good, I felt stupid that I hadn’t asked these questions at the time. But she completely understood that sometimes you just need to think about it, or talk to others and then a whole bunch of questions come pouring in!

Ditropan – we have started it. We are starting very slowly 1 mL once a day for the first week, then twice a day for the second week (where we are now) and then three times a day for the third week. Then we start increasing the dose to 1.5mL if he tolerates that. Nickolas is getting a little flushed sometimes, and we have increased his Miralax/Restoralax (laxative) but so far so good. We are getting more volumes when we cath and while he’s not quite dry between, we are getting there.

It is such a change to want dry diapers instead of wet ones!!! I’m not too sure I like it. But the idea is to relax his bladder, so it doesn’t have to work too hard and damage itself and the kidneys. So a relaxed bladder means more volumes when we cath. A fully relaxed bladder means dry diapers in between.

So the reason we are on ditropan is that even though Nickolas does pee on his own, and he does hold urine, a child with spina bifida would not have a completely flaccid bladder. The bladder and the bowels receive confusing signals from the brain because of the nerve damage. The bladder reacts by freaking out and spasming. The bowels on the other hand, get confusing signals and just give up, don’t do anything and wait and see. Constipation.


The ditropan calms the bladder, but it also calms to bowels. The spasming is important to stop because it will force urine into the kidneys and damage it. As well, the bladder is a muscle and a muscle that is overworked (insert picture of bodybuilder here) gets hard and thick. Hard and thick means damaged. This is all that we are trying to prevent/stop. This will also protect his kidneys. One of the most important things to do is protect the kidneys.

So here we are. Starting ditropan, off antibiotics. The ditropan is working – we are getting larger volumes, so I guess that is a good thing.

Oh we also decided on the circumcision issue. Boy did I open a can of worms with that one! After looking through different sites and reviewing discussion started by another mom who has a son with SB I decided a couple of things. 1. Circumcision has been shown to decrease incidents of UTI’s (bladder infections), 2. Spina bifida does come with a risk of UTI’s, 3. Nickolas has not had any UTI’s [knock on wood], and 4. We have some time to decide. I don’t want to go past 18 months before making a final decision – once he realizes what his penis looks like I don’t really want to change that. So for now we are waiting, with circumcision an option if his bladder starts to act up.

And there we are.

Clinic Visit

We had our second spina bifida clinic this week. I can’t believe it’s been so long since we first went to Bloorview Kids Rehab (now Holland-Bloorview), but it was only 4 months ago. It feels like we live there sometimes. I could drive there with my eyes closed! But everyone there is so focused. So great with everything. We go to Bloorview for physiotherapy weekly, and then once a month they have a mom and baby/child support group, and then our clinic visits. So we can see everyone at the same time. We only need to go downtown to Sick Kids for neurosurgery appointments and tests that can’t be done at Bloorview.

Our appointment started at 3pm, so I knew it would be a long afternoon – we got out at 7pm. We saw the developmental paediatrician – Dr Church, had a renal ultrasound – all good, and we saw urology. The urologists that we see rotate, so the one we saw in January at Sick Kids are part of the same rotation that we see at Bloorview, but so far we have seen at least 3 different doctors.

So the first thing he asks is what medication are we on. Restoralax (Miralax) is the major one – but I keep forgetting it is a medication. But also Trimethoprim, an antibiotic that we are using for a prophylaxis (to prevent infection) because we are cathing. Well it was decided to stop the antibiotic – perfect I was going to ask because he hasn’t had a UTI and I don’t want him to have too many antibiotics unless he needs it. Then the urologist wanted us to start ditropan. Ugh!

The dreaded ditropan. I’ve heard of it before – it is one of the most common medications that kids who have SB are on – second only to Miralax it seems. This medication is to relax to bladder, this prevents reflux (urine being forced back into the kidneys – not good). But wait a sec! I thought Nickolas’ bladder was relaxed – the ‘lazy’ bladder. Well no we don’t know what his bladder is like. We need further study – urodynamics (which we get done in the next month or 2).

OK so I get the reason for ditropan, and I get that it is important to prevent reflux. But I don’t want to start a medication that is unnecessary. Oh and did I mention the side effects? Constipation (give me a break!!!) and over-heating, as well as dry mouth. And he won’t pee on his own.

I’m not entirely happy with our visit – in fact in kept me up at night.
What to do?!