Foster child with neurogenic bladder/bladder spasms, WWYD...?

[Feebzmom]

So after lots of complications and delays, we're finally...FINALLY able to pack up and head to Disney with my two current foster kids (b/g sibling pair). We're going to be staying in Ft. Wilderness, and this will be not only the kids' first time going to Disney, but actually their first vacation/family trip ever.

Foster son is beyond excited to be going, but we're still a bit uncertain on how to tackle a potentially tricky issue once we hit the road. He is fully potty trained, and almost never has issues when it comes to going #2, but has very little warning on needing to go pee. He does not require catheterization.

At home during the daytime, while we're still somewhat trying to pin down a long-term strategy for how to approach this-- what we *typically* end up doing is a combination of frequent bathroom trips when possible, and pull-ups. He drinks a LOT of water, constantly.

Does anyone have any suggestions on how best to make this work while at the parks? Truthfully, right now we're learning towards leaving the pull-ups at home, and instead packing diapers for him to wear while actually in the parks (he's used to those because he wears them at night). Then we'd just worry about taking him to the bathrooms for #2, and let him kind of relax and enjoy the parks. But, very open to any and all suggestions!

 

[gap2368]

I would do what you do at home. Have you thought about asking for a das

 

[jo-jo]

How old is he? Is there a way to cut back on his drinking at all? Not saying , nothing to drink between X and X times, but maybe get a water bottle where you have to suck the water vs the water just pouring into mouth.

 

[lanejudy]

I also would continue your home daytime routine -- plenty of bathroom breaks (every time you walk past one, before entering any queue, etc.) and the pull-ups as back-up. And bring a change of clothes just in case.

One unsolicited comment... make sure his medical team has ruled out diabetes.

 

[Feebzmom]

How old is he? Is there a way to cut back on his drinking at all? Not saying , nothing to drink between X and X times, but maybe get a water bottle where you have to suck the water vs the water just pouring into mouth.

Lord I’m sorry for forgetting to say! He is 6. Kind of an important bit of information to leave out on my part. Whoops!

As far as drinking goes, we certainly can limit things to just occasional sips when he’s genuinely thirsty.

Because of his kidney situation, in the past we leaned towards unlimited water at all times. But to a degree, I suspect he was chugging water more just out of habit/boredom, rather than being actually thirsty.

 

[Feebzmom]

I also would continue your home daytime routine -- plenty of bathroom breaks (every time you walk past one, before entering any queue, etc.) and the pull-ups as back-up. And bring a change of clothes just in case.

One unsolicited comment... make sure his medical team has ruled out diabetes.

To be completely honest, his capacity to tell when he needs to go to the bathroom (at least for pee) is basically close to zero. Or at least, there’s such an urgency that- by the time he can recognize the need to go, he has all of 5-10 seconds to rush to the toilet.

At home, we try and have him go to the bathroom each hour on the hour. He probably could go more often, but having him go to the bathroom every 30 minutes just wasn’t feasible and seemed to make him miserable.

We still mostly have wet pull-ups at home, but I try and have him at least TRY and use the toilet on the hour, even if he just had a wet pull up 5 minutes ago.

Change of clothes is a VERY good idea. We keep an ‘emergency’ kit of clothes in our car at all times, for both kids—but packing one for the park itself is actually very smart.

No diabetes that were aware of. He was tested for it about three months ago at the pediatric urologist. Although he does have a family history of it, so we’ll keep an eye on that.

 

[ak517]

This would very likely qualify for DAS (I have two adult friends with bladder issues who previously qualified for DAS). I also use DAS. I've never done the pre-register and always gotten it at my first park of the trip, but just make sure the whole family is in line so they can link everyone's magic band to his DAS account.

 

[lanejudy]

To be completely honest, his capacity to tell when he needs to go to the bathroom (at least for pee) is basically close to zero. Or at least, there’s such an urgency that- by the time he can recognize the need to go, he has all of 5-10 seconds to rush to the toilet.

At home, we try and have him go to the bathroom each hour on the hour.

My DD has similar issues. Her ped uro actually "prescribed" bathroom breaks at school at least every 1.5-2 hours (written into her IEP when she was younger). All the more challenging because being wet didn't seem to bother her in the least.

A the parks we do frequent bathroom breaks, even just to "try." And our whole family will do it so she doesn't feel singled out, plus some queues and rides get long when you least expect it. Since he's young enough that he will still wear a daytime pull-up, that's an excellent back-up protection; as he ages you might look into leakproof underwear which has improved over the years. The Bedwetting Store carries kid sizes, and probably Amazon or other specialty stores. And I always carry extra clothes for her - trying to find a pair of shorts in the right size isn't fun and usually costs much more than I like to spend.

If the drinking is just out of habit, you can easily limit some of that. DD has kidney issues and needs to drink a lot on a regular basis, even more when it's hot and humid and/or if she's more active. As a teen she was diagnosed diabetic, so they'd be smart to keep it on the radar if there is a family history.

 

[MinnieMSue]

I would ask him what he wants to do. Also definitely try to go before getting into line. He is going to need some form of protection on. Even the lightning lane line plus ride time can be rather long and if there is no warning he will need protection.

 

[jo-jo]

What do you use at home? If you use pull ups all the time, I'd be concern of complains of using diapers at disney. Or if he uses diapers at disney, it will set him back to learning/understanding control, once you are home again and back to pull ups.

 

[Feebzmom]

What do you use at home? If you use pull ups all the time, I'd be concern of complains of using diapers at disney. Or if he uses diapers at disney, it will set him back to learning/understanding control, once you are home again and back to pull ups.

It’s kind of a mixture of all the above at the moment.

Usually at home during the daytime he primarily wears pull-ups, so long as we’re actually at our house.

When we go out and about and run errands/visit family etc, its more of a 50:50 split between pull-ups and diapers. Depending on the circumstances.

At nighttime, regardless of where we are, he wears a diaper.

 

[Feebzmom]

I would ask him what he wants to do. Also definitely try to go before getting into line. He is going to need some form of protection on. Even the lightning lane line plus ride time can be rather long and if there is no warning he will need protection.

Long line waits are something I’d completely forgotten about…that’s a VERY good point! I’m 100% going to look into applying for DAS, if that would be a possibility.

Really appreciate the suggestions everyone!

 

[Feebzmom]

My DD has similar issues. Her ped uro actually "prescribed" bathroom breaks at school at least every 1.5-2 hours (written into her IEP when she was younger). All the more challenging because being wet didn't seem to bother her in the least.

A the parks we do frequent bathroom breaks, even just to "try." And our whole family will do it so she doesn't feel singled out, plus some queues and rides get long when you least expect it. Since he's young enough that he will still wear a daytime pull-up, that's an excellent back-up protection; as he ages you might look into leakproof underwear which has improved over the years. The Bedwetting Store carries kid sizes, and probably Amazon or other specialty stores. And I always carry extra clothes for her - trying to find a pair of shorts in the right size isn't fun and usually costs much more than I like to spend.

If the drinking is just out of habit, you can easily limit some of that. DD has kidney issues and needs to drink a lot on a regular basis, even more when it's hot and humid and/or if she's more active. As a teen she was diagnosed diabetic, so they'd be smart to keep it on the radar if there is a family history.

That sounds very much like the routine we’ve been trying to make habit over here! As far as ‘trying’ to go, regardless of whether or not he actually feels like he needs to at the time. (IME, he usually WILL go, as long as he tries).

For sure thinking we need to be more thoughtful about packing along spare clothes, especially since we’ll have a stroller to keep things in to an extent.

Diabetes is something I (unfortunately) have a lot of tragic history with personally. So when I was told he has a family history of it, I swore to myself to be particularly vigilant with. Especially given his other medical concerns. He’s tested negative in the past, but I’m hoping to readdress that so long as he’s placed with us. Just to be cautious. I’ve seen a couple of pre-diabetic indicators with him in the past even. So I hope it’s a false flag and he’s fine going forward. But, I’ll certainly stay vigilant with it.

 

[jo-jo]

Pack the extra clothes in extra large ziplock bags, so when/if he needs to get changed, you'll have a bag for the wet things.

 

[jo-jo]

Long line waits are something I’d completely forgotten about…that’s a VERY good point! I’m 100% going to look into applying for DAS, if that would be a possibility.

Really appreciate the suggestions everyone!

And with the excitement of getting on a ride, he may not voice needing to go, so the shorter in line, the better.

 

[DVCjj]

It's so wonderful of you to take them to Disney and I hope you all have a great smooth trip.

 

[DisneyOma]

Long line waits are something I’d completely forgotten about…that’s a VERY good point! I’m 100% going to look into applying for DAS, if that would be a possibility.

Really appreciate the suggestions everyone!

To be honest, if he has to go within 5-10 seconds of him telling you, DAS isn't going to do a thing for you except give you time to change him if he needs it. He's going to wet himself whether he's in the queue, on the attractions, or leaving the queue to get to a bathroom, because there are none 5-10 seconds away from inside a queue. Have him try before you get in a line, and then if he does go while in the queue or attraction, change him afterwards. That's what the pullup is for, right?

For everyone who is saying get a DAS, what is the DAS supposed to do? The kid goes 5 seconds after he says he has to pee:

To be completely honest, his capacity to tell when he needs to go to the bathroom (at least for pee) is basically close to zero. Or at least, there’s such an urgency that- by the time he can recognize the need to go, he has all of 5-10 seconds to rush to the toilet.

 

[Betty Rohrer]

That sounds very much like the routine we’ve been trying to make habit over here! As far as ‘trying’ to go, regardless of whether or not he actually feels like he needs to at the time. (IME, he usually WILL go, as long as he tries).

For sure thinking we need to be more thoughtful about packing along spare clothes, especially since we’ll have a stroller to keep things in to an extent.

Diabetes is something I (unfortunately) have a lot of tragic history with personally. So when I was told he has a family history of it, I swore to myself to be particularly vigilant with. Especially given his other medical concerns. He’s tested negative in the past, but I’m hoping to readdress that so long as he’s placed with us. Just to be cautious. I’ve seen a couple of pre-diabetic indicators with him in the past even. So I hope it’s a false flag and he’s fine going forward. But, I’ll certainly stay vigilant with it.

as for packing stroller another vote for extra clothes in ziploc bags for each set of clothes plus wipes in a smaller bag inside bag with clothes. less to carry in bathroom with you and a place to put wet stuff. you might want to pack an extra outfit for yourself and rest of group. if can I would watch for Diabetes if the drinking continues and any other indicators. hopefully you guys have him long enough to get things sorted out for him.

 

[Feebzmom]

To be honest, if he has to go within 5-10 seconds of him telling you, DAS isn't going to do a thing for you except give you time to change him if he needs it. He's going to wet himself whether he's in the queue, on the attractions, or leaving the queue to get to a bathroom, because there are none 5-10 seconds away from inside a queue. Have him try before you get in a line, and then if he does go while in the queue or attraction, change him afterwards. That's what the pullup is for, right?

For everyone who is saying get a DAS, what is the DAS supposed to do? The kid goes 5 seconds after he says he has to pee:

It does vary a bit day by day. But, overall-- yes it's usually very, very little forewarning. That's why, for the most part, we've been trying to go the route of having him *try* and go at regular intervals, whether or not he needs to or not. That way we're (hopefully) never getting to the point where he only has a split second to run to the bathroom.

...I say that after today was very much *not* successful on having him go once per hour. -.- But, that was more of an outlier when we're at home.

 

[Betty Rohrer]

It does vary a bit day by day. But, overall-- yes it's usually very, very little forewarning. That's why, for the most part, we've been trying to go the route of having him *try* and go at regular intervals, whether or not he needs to or not. That way we're (hopefully) never getting to the point where he only has a split second to run to the bathroom.

...I say that after today was very much *not* successful on having him go once per hour. -.- But, that was more of an outlier when we're at home.

that is the reason it is called potty training. some days are better than others. been there for years even though they were not all my kids or grandkids. worked with toddlers until 3 years olds and I was involved with a lot of potty training. good luck for both of you