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!

Friday, January 17, 2014

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.
Blurred vision

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!

1 comment:

  1. What is the minimum weight? I have a little guy with SB on Ditropan and while it works pretty well so far (he's just turned 2) I would like to learn about other options as he grows. Thank you!