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!

Monday, July 26, 2010

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?!

2 comments:

  1. Zachary is on ditrapan (oxybutanin). In the beginning his stomach seemed to be quite bothered by it, now it's just once in a while. I have the hardest time with the over heating, especially with the weather we've been having, can't stay out too long or go out at all (hard with two other boys). But he stills pees on his own and infact has wetter diapers now. He's on it for an overactive bladder, he shows no signs of reflux in any of his testing.
    Hope Nickolas does well on it and doesn't add any new worries :)

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  2. I should've read this one first about the infections! Yea for none! We are supposed to be able to drop the antibiotic in the fall hopefully.

    We have the same experience as Stefanie and Zachary. He pees on his own and all tests so far are showing no reflux or any problems. King's been on it since his VUCG (?) in the hospital. I didn't think he's had any side effects, but I didn't know about the over heating and he is always hot! But then, so is Jeff so who knows :p

    I'm sure I'll feel the exact same way as you do now once we get our first 'script for Miralax. Ah, medicating is so blaaaaah. :(

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