A change in Ditropan

We have been giving Nickolas oral medication every single day, three times a day for 1,262 days.
But not any more.

Oxybutinin, Ditropan

This medicine helps Nick's bladder from spasming and over-working and becoming tough and thick and misshapen. He needs it. It helps to keep him dry.
That still doesn't make me happy about it. It is not approved for use in children under 6 years old.

Right now Nick hasn't been dry. I'm not sure why or what is happening.
When we saw urology in December I said this was happening and as expected he said we could increase the dose. When we increase the dose we increase the side effects.
Constipation
Over-heating
Blurred vision
Drowsiness
Dizziness
Headaches

Other symptoms I have heard from parents include night terrors, hallucinations, mental or mood changes, confusion, irregular heart rate.
And I am giving this medication to my little boy.

So every time I talk to them about the leaking, they want to increase the oral dose, and I ask about alternative ways to give the medication.
And this has been going on for a couple of years.

Well in December we got the OK for an alternative route. A patch.

 

Yay! a different way of giving this medication. Which also reduces the side effects.

And why didn't we do this before?

I think it is weight-related. Nick is the minimum weight.

 

It goes in one of 3 different places. Bum, hip or stomach. It is ok to go over scar tissue (bum), or areas with decreased sensation (hip), and it shouldn't be exposed to sunlight (stomach in the summer). It does not contain latex.

 

From the picture it looks so small. On a 4 year old it does take up a significant amount of space.
So far we have tried out the hip and the bum. the issues that I have had so far is that the hip rubs against his diaper and attracts all the stickiness from his pants. So we moved it to him bum, and it sticks a bit to toilet seat.
It hasn't come off by itself, but it does not sit completely flat against his skin. I guess that is just how a patch works.

I have noticed that Nick has still had some leaking. But I'm hoping it will even out after we've been on it for a bit.
It is a change in our routine. And a good change.
No more
...Forgetting about the middle of the day dose
...Being out of the house when it is due and forgot to put it in our bag
...Spilling bottles, leaking syringes, spraying it all over, or trying to give it to a sleeping child
... First thing in the morning thinking: did I already give it, or do I have to give it?
... Being away for a couple of days and realizing with a sinking feeling that you forget the medication

One patch and forget it.
Now I just have to stop reaching for the bottle that isn't there every day!

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.

The pharmacy rant - again

Really!!!!
I guess I only have myself to blame, because I didn't change pharmacies after my initial pharmacy rant (see here). But I was too lazy to change pharmacies and thought I'd give them another chance -

We've just started ditropan for Nickolas' bladder. This is not a medication I've been looking forward to - as I've described in a previous post (here). So I've been researching it.
Not only is it not considered safe for children under 5 (or 6 depending where you are reading) but that doesn't keep urologists from prescribing it. It is very very common for infants with spina bifida to be prescribed it - way before they turn 6. Now not considered safe seems to be drug-speak for we haven't tested it on infants and children under 6 so we have to cover our buts. Well it seems that enough infants with spina bifida have been on it - they should get their acts together and either say yes it is safe, or no it is not. Not just hide behind a 'we haven't tested it, so we can't say' because it is being tested - on our kids!!!
OK that was so not the pharmacy rant I started to write about!

So anyways - aren't pharmacists supposed to protect kids from being prescribed a medication they are contraindicated for? Or is that asking too much - isn't that what they do?! But we are still taking it, even if he is in this age group. So my problem with my pharmacy - At Ritson and Taunton - is that they don't know what they are talking about!
Seriously. I know more about this medication than the pharmacists who's job it is to know about this medication. And I learned about it by spending a bit of time online and reading the label of the drug! So first of all the pharmacists read the prescription wrong. It was written 1.5mL tid - they wrote it as 2.5 mL tid (tid = three times a day). OK doctors scribble, I'm not too happy about it - but I can (kinda) see where the mistake can be made (as a fellow medical professional - not as a mother). Actually you know what, I cannot see where they are coming from. They are accountable for writing the wrong prescription - messy writing is not an excuse.

They asked if I wanted to talk to the pharmacist because I haven't had this medication before. Sure, why not. So I asked about side effects - the first thing he said was dizziness, so if Nickolas was walking - nope. Then he went on and on about being dry during the night with bed wetting - still nope.
He said also to watch for dry mouth and dry eyes. OK good to know. I asked about constipation - oh yes, constipation could be a side effect - because the bladder and bowels are so close and relaxing the bladder could relax the bowels. OK, gotcha - even though I already knew this.
Then I asked about over heating. He didn't know what I meant, he asked me if I meant dehydration. Well, not really, but sure I guess over-heating like dehydration. No, dehydration is not a side effect. Do not worry about over heating.
WRONG!!!!!

I know from talking with other moms who's kids are on ditropan that over heating is big. And if you look up ditropan at this link, it has a whole section on What is the most important information I should know about Ditropan?

Ditropan can cause heat prostration (fever and heat stroke due to decreased sweating) in high temperatures. If you live in a hot climate or will be exposed to high temperatures, take appropriate precautions.

Now I guess Canada may not be considered a hot climate. But when we've had 30 - 40 degree (Celsius) weather for the last month - I think we can qualify. So how come my pharmacist - the one who is supposed  to know about the medications they give out - it's his job! did not know the most important this I should know about Ditropan. And made me kinda think I didn't know what I was talking about!

I am extremely unhappy about this. I feel a letter coming on!!! Right after I call around the different pharmacy's.