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.

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.

Appointments Galore!

May is our month for doctors appointments.


For 1 month we have 2 SB clinic days, MRI, pediatrician check-up, 2 dentist appointments, neurosurgeon follow-up (which I had to move to June), 1 resources for exception children visit and 1 camp consultation.



First was SB clinic day.


It went well after a bit of a schedule-confusion.


My appointment letter said 0830, but the confirmation phone call said 1030, so we aimed in the middle for 930. We went straight into a room, and stayed there for 6 hours!
My father came with me, which was good because we didn't actually have time for lunch. We were told, 'just one more person' or 'I can come back' but from experience... you grab them while you can.
So my dad went and brought food back to us.


I had one focus. Get the MACE scheduled. But also see and talk to everyone else.

But we also followed up with everyone. Social work to see if there is anything to help us (and introduce herself as our original social worker has left). Psychologist to follow up with our plans from last year and my concerns about Nick's learning. Occupational Therapist to discuss how Nick is doing with school and his wheelchair. Physiotherapy to talk about his walking and mobility.

Nick showed off by letting go of the table and standing there for about 10 seconds... over and over again. The label L3 came out again with discussion about functional muscles. Which I listened to and put aside until I can think more about it.

Dr Church came in and we discussed how everything is. As Nick's developmental pediatrician she is part of everything. I really like and respect her, and the feeling is mutual, she respects my decisions and observations. Nick loves her too. We talked about bowels and bladder and the upcoming MRI to look at tethered cord (which I have successfully pushed to the back of the my mind for the last couple of months).

At the end of the day we saw urology. Discussed the MACE, I already had read or learned what he explained, all of the information was consistent with what I knew. I signed all of the papers and we had a plan (MACE operatively, but if for some reason it was not possible then the c-tube as a back-up). Now it is just waiting for the date.

Nick was actually very interested in what was being said and when we got home that night asked when the catheter was going to go into his belly button.

We also got a prescription for a new type of oxybutynin. A gel instead of the patch. We've had issues with the patch coming off early, and he had a new red and irritated mark from his last patch (that just got worse through the day). So we'll try this new gel.

We left clinic with a ton of information, a plan for surgery, and a car full of tired people, with a drive through rush hour traffic. No clinic again for 1 year, but as usual Dr Church can be contacted earlier with any questions or concerns.

2 days later we were at Sick Kids for Nick's MRI. Sunday morning at 8am. Yuck!

8am meant a very early start.... but no line up or bumping.

Katheryn liked Nick's ninja look.

It worked out really well. I knew the nurse he had, he went to sleep really well and wasn't scared. He woke up drunk and not unhappy. He was fine for the drive home (except for us getting a bit lost - not my fault), and tired for the day.

Now that that is out of the way we have lots of other appointments through the month, and follow up with Dr Rutka in June to see what the MRI says.

One thing I have noticed over the years with Nick's appointments, we seem to have months and months with no appointments and then they all bunch up like this for a month. It makes for a really busy month, but then you know you'll get a break soon.



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 - Carry On

We had our spina bifida clinic this week.

It has been almost 14 months since our last full appointment, and even though most things have stayed stable and relatively in control, I still was ready for this appointment. I had a couple of focuses - school and poop. And we had a whole group of families who were going to be able to meet up at lunch!

Nick got his game face on!

We had him walking around in his walker the entire time. Showing off to everyone who got to see him grow up until our baby group ended in last spring.
I had some things that I wanted to focus on.

Number 1 - I want a bowel routine. (Skip ahead to Number 2 if you don't want to talk poop). Something effective, something that will help us get out of diapers. Something that is not suppositories (which we have been trying for the last year). I have been trying to get a routine for almost a year! I talked about it in this post last May. And we have (knock on wood) solved our constipation problems and want to work on our clean-out issues.
The advice that we got was to continue with the suppositories, that it will take weeks to get results. To be consistent. To time things appropriately (sit on the toilet 20 minutes after eating, knees elevated).
We have been doing this. For a year. OK so we haven't been that consistent in the last couple of months, because it seems to be messier for the day after we do this, because it seems to work well for consistency but not for routine.
And even though I trust our nurse Julia and value her expertise and opinion, I also trust my own instincts and believe that we are past this point and should be trying something new.

Number 2 - I want to be as ready for school as we can be. And I talked about my concerns. A lot.
We talked about how far he has come in the last year. I sometimes forget that 18 months ago he wasn't talking at all. And now he talks as well as Katheryn.
But I'm worried about his learning. I am always aware that spina bifida makes him more likely to have learning difficulties (but I'm not sure what that looks like yet). And I'm worried that some of the things that I'm seeing now with his learning are more spina bifida/hydrocephalus related and less 3 year old/boy related.
Specifically that he is counting, counting numbers and counting things (to about 15 - which he has been doing for a while) but he isn't able to recognize numbers, or letters. We've been working on it, but he isn't showing any progress with recognizing numbers or letters.
I'm not sure if it is how I am approaching it - "Nick what letter is this" and he freezes. Or that he just isn't getting it. I've started pretty simple. When he does reply he usually says "A" or "4" for almost everything. Or just doesn't say anything at all.

We talked with the clinic psychologist as well, about school needs and expectations. But at the moment we still don't know what school we will be going to (but since we haven't heard and it is April, we are hoping that means yes to Campbell's). So we will follow up with her in the summer some time.

Number 3 - I wanted the opinion from physiotherapy about forearm crutches. Pretty much she blasted that idea out of the water. (This is the same physiotherapist that told us that Nickolas functioned at the L3 level, which I have never believed.) And it is not the physiotherapist that we have seen primarily at Bloorview, so I'm not actually confident that she is aware of Nickolas' potential. So I won't always agree with her opinion, but still listen to what she has to say.
Kyle and I have been thinking of fore-arm crutches for Nick, to make something that going around the classroom easier and less bulky than the walker. And last summer he was doing so great with the canes that I have been looking on and off for some canes for us to purchase. But somewhere along the way the idea of the forearm crutches came up.
After we got over the initial strongly negative reaction to discussing crutches, I actually heard what she was saying. The base of a crutch is one point, whereas the base of the cane (quad cane) is 4 points and a stronger base. But he has to have pretty good balance for it to be effective for mobility. Right now his walker gives him the ability to stop and rest when needed, and this isn't there for canes. He must be stronger and more solid to use something that is not the walker.

We went through all of this before lunch.

And lunch was a very important event for us.
Because we had a date.
Through the facebook group we discovered that 4 of us families were all going to be a Bloorview for clinic on the same day. So we all exchanged numbers so that we could connect. There was actually a whole lot of people that we knew that day. Unfortunately our times didn't meet up with Stefanie and her son, but we did get to have lunch with little Alejandra and mom, and also meet a little girl who I knew before she was even born, and her parents! Another family who I have talked to online was also there to meet for the first time in person.
This was our lunch group:
Josh, Amberly and Claire, Antonella and Alejandra, Nick, me, and Kyle - and in the corner (no realizing she was in the picture) is Shauna, who tries to be at all of clinic groups. As a representative of SB&H.

We hurried through lunch, to wait and wait and wait in the waiting room for our afternoon appointments. During this time we got to connect with some other families we knew from baby group. And see how much everyone has changed!
Nick had a lot of fun playing with another little girl on the carpet. They were chasing each other around, she is walking but spent a lot of time crawling on the floor with Nick as well which he really liked!
Nick gave up on his walker to crawl around on the floor. Or what he is doing in this picture - which is raising up on his knees. He has been spontaneously doing this for a couple of weeks, getting stronger and stronger! (And higher than in this picture)

The end of the day was spent with the docs. They didn't tell us anything that we didn't already know. Orthodically he is great. (I can a concern about his legs bowing a bit, but the bone doc said it wasn't anything to worry about - so I won't).
Urologically we got a lot of information from a surgeon. Because that is what he is. He spent the entire time talking about the MACE surgery versus a caecostomy button and explaining the 2 different procedures.

This is a surgical procedure that gives us (and in the future Nick) the ability to clean out the colon from the top down (antegrade enema). So that enema solution can go in the top of the colon through a stoma (hole) from the outside of the body to the inside. It is supposed to be a very effective way to achieve social continence and is more effective than the bottom up (retrograde enema) approach of regular enemas. 
There are 2 different ways to do this, 2 different types of surgeries. Including a simple radiology procedure to put in a tube from the outside to the colon (like a g-tube) - the caecostomy. Or a laproscopic surgery to use the appendix to make a natural tube from the belly button to the colon  - the MACE.

It gave both of us an opportunity to ask questions, get answers. I have looked extensively into these surgeries and made my decision of what I would want (MACE) but Kyle hasn't. And while the doctor said we could do this at any age, I'm not ready to put my son under the knife until I am confident that we have tried every other option there is out there. It also gives us an idea of the procedure to follow once we make the decision that it is time. In my mind I'm thinking 6 or 7. But the idea of an elective surgery for my child still makes me a little sick.

So that was our clinic visit in a nut-shell (like a coco-nut). I hadn't expected to write so much.
Clinic didn't have any big news, it was pretty low key. It mainly reinforced things that I already had in mind and gave us a plan.
Good thing nothing major happened, because this visit actually fell on Katheryn's birthday. And our day was jam-packed full of birthday-traffic-clinic-traffic-birthday-dinner-sleep.

Hopefully we will have an uneventful (but community filled) clinic visit every year!