Underwear!

For real this time!

We have the solution!
Good nites Tru-fit underwear (the link seems to be broken, all I get is a stream of letters), but you can google it.

It has been 6 weeks since the MACE and we haven't had one single (knock on wood) poop accident! Even with skipping a day, and once two days, and no accidents.
We are still having some leaking, but having a whole diaper for a bit of leaking is over kill. So then I'm trying to figure out what to do. We've tried the pads over the last year, and they slip around or bunch and leak.

I've seen the Tru-fit underwear before and the pads. The underwear is $27 for 2 pairs of underwear. And I thought that was waaay overpriced, but I bought the pads to just put in regular underwear.
The thing with the true-fit is that there is no sticky backing, so of course the pad didn't stick to anything, and actually fell out.

So when we went on vacation at the end of August I bit the bullet and paid the $40ish for 2 pairs of underwear and a pack of (18) pads. After just a couple of days I couldn't believe how well they worked. They are FANTASTIC!

They are regular underwear, that hold a pad in place, to catch all of the pee.
 We have only had one time of leaking out of the underwear, and that was when I put on Nick's underwear I didn't make sure his penis was actually on the pad. It wasn't, so of course when he leaked it wasn't onto the pad.

We've been using the underwear every single day for 3 weeks and that is what I am sending Nick to school wearing. Real underwear! To school!

The difference between the underwear is an inner liner that is made to fit continence pads, while the outside is regular underwear. I've now bought 6 pairs of underwear so we have enough to get through the week.

I've been looking to see if anyone can sew these liners that I can just clip into regular underwear, but I can't find anybody. My sister wasn't able to, she was pushing cloth diapers that do the same thing, but I really don't want Nick to carry around peed-in liners when he is in school.

The outside looks just like regular underwear

Nick isn't as excited as I am. He says he likes wearing the diaper, which he still wears overnight. But once we get the underwear on him he is good.
We use the tru-fit pads at school, which are bigger, but more expensive. And at home we use regular adult incontinence pads, which still fit but are a bit smaller. They have a sticky back, but I don't stick them on.

*I wondered about latex, the amazon.com sites says that it is NOT made with natural rubber latex!

This is such a great creation. I'm so glad we are able to use them!

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?!