Daughter's Bathroom Issues

[LSantos411]

I've been a long-time reader here on DISboards, but have never posted before. My daughter's asked that I try to be as discreet as possible, and so I will.

My 15 year old daughter was unfortunately in a car that was in an accident about 3 months ago. She suffered some (relatively minor) damage to her spinal cord that has almost completely healed. Fortunately, her doctor has cleared her to ride all but the most severe rides (so no tower of terror, RnR, etc.). Unfortunately, since the accident she has had a hard time telling when she needs to use the restroom... we've found ways to manage this through a careful routine when restrooms are easily available.

We had hoped she would have more of a recovery before our trip, but it doesn't seem it so far. We will be leaving in just about two weeks.

I'm hoping that somebody here will have some experience dealing with something like this (though I hope nobody has had to go through this with their own children). Does anyone have any advice or tips on dealing with this and helping her maintain her dignity?

I'm not sure what other information I can provide, but if anyone has ideas or questions, I appreciate any input.

 

[honeyb4]

can you use the extra absorbant pads (usually used to add to a diaper at night if the child goes to much?) maybe that will help in case she cant wait.

also- can you plan out where the bathrooms are- so this way there is no surprise or searching? maybe even an index card for each park broken down by area- ie- if in fantasy land it is near its a small world....

 

[Pomlover2586]

I have IBS [Irritable Bowel Syndrome]and have had it for the past 5 years......while I do not experience the control loss your daughter seems to I do use the bathroom on a fairly frequent basis. I ALWAYS get a GAC card when at the parks because waiting in long line doesn't work out with my stomach [by the time I'm almost done waiting I have to go and end up having to start the line all over again] The GAC allows me to recieve a "come back after this time" pass that allows me to use the restroom right before the ride and then i'm good to go [No pun intended!] I reccomend using the restrooms FREQUENTLY [as in whenever you pass one -use it] Also you can try sanitary napkins [for leaks] or [although i've never used them] I believe my grandma has some depends that are thinner and not noticable under pants. I hope this might help a little bit. Bathroom issues can be such an embarrassment at that age, but it WILL get better

 

[LSantos411]

The index cards are a great idea. I will definitely make those. I'm already planning to make cards with ADR #s and the like, so that goes hand in hand.

My biggest concern is that she should have to go while on a ride. Also, with the heat, I'm sure she'll be drinking lots of fluids. And, being Disney, the food may or may not be the easiest on one's stomach.

 

[LSantos411]

Before the problems began, my daughter was very excited about the trip. Now she seems very nervous. Hopefully we'll be able to figure something out for her so she can enjoy her time.

 

[SueM in MN]

There are pads that are made for urinary leakage. They are more absorbant and are treated to handle odor. They come in various sizes to handle different amounts of leakage.
This is one good brand that is readily available in stores.
Here is another good brand.
Both of these brands are similar to sanitary napkins, but are specialy designed for bladder problems. These ones are designed for active people (not like some of the more 'nursing home' type brands).

if you haven't checked it out yet, look in the disABILITIES FAQs thread for information about GACs (Guest Assistance Cards).

 

[LSantos411]

Thanks for the product links, I'll take a look. It may take some convincing for my daughter. I hope they will be sufficient. Does anyone have any personal experience with them?

I have looked at the GAC and will attempt to get one when we get there.

 

[SueM in MN]

Thanks for the product links, I'll take a look. It may take some convincing for my daughter. I hope they will be sufficient. Does anyone have any personal experience with them?

I have looked at the GAC and will attempt to get one when we get there.

Yes.
My youngest DD is permanently disabled and has used both of the products I posted links to.

 

[LSantos411]

Thanks. Do they work at night as well? Sorry if that's too much to ask, it's all very new for both my DD and I.

 

[WildGrits]

Those Poise Pads are good. They are contoured so they stay in place while you are walking. But I can only vouch for the bladder control. I don't know about BM issues.

For sleeping I know someone makes a nice mesh holder so that your skin can breath instead of having plastic touching it. I'd have too look it up though. It's been awhile.

 

[LSantos411]

Thanks. I'll definitely see if she'd like to try those before we go. Unfortunately, she really gets very little notice when she has to go, and then can't really do anything about it when it's too late. Stress and/or excitement obviously don't help matters either.

 

[Ms_Butterfly]

Have her use the bathroom frequently, even if she thinks she doesn't have to go. Go before eating, go after eating, go when you come across a bathroom or every other bathroom in the parks, etc. Also, since you still have a couple weeks before you leave, keep track of her bathroom schedule right now (write it down each day) and see how many times she goes, what times she goes at, etc. This will aid in planning. (Just promise your daughter that you won't keep these cards for the scrapbook, LOL!)

You can use park maps before your trip (I recommend the ones in the PassPorter book because they show how long it takes to walk from point A to point B, which would certainly be helpful in your situation) to see where every bathroom is. You could always make the symbol stand out more on the map by putting a sticker by it or circling it with a certain colored marker (perhaps a silver or gold paint marker) before laminating the map (not only in case it rains but it makes it heavier in case of wind and durable from rips and smudges and spills).

Be sure you plan a lot of bathroom stop minutes into your planning time. On my recent trip, my friend had to use the bathroom a lot (due to her disability) and it really ate up touring time. It wasn't something I was expecting, so was one reason we didn't get to see everything we wanted to see this trip. So, you may need to reduce the number of attractions you're expecting to see per day by a bit because of all the bathroom stops you may need to make. You certainly wouldn't want to disappoint your daughter or anybody else in the party, especially since she'd then feel blamed for it.

You may want to bring some pre-moistened toilet wipes into the parks with you in case she needs to clean herself up after an accident. You may wish to bring an extra change of clothes into the parks, as well, just in case.

I hope she continues to recover and is able to recover fully!!

 

[LSantos411]

We will definitely do that, however, she tells me it's hard to make herself go when she doesn't feel like she has to. I can certainly understand that.

Unfortunately, if it gets to the point of needing a change of clothes, I imagine my daughter will just want to leave the parks.

I still worry about the longer rides like Ellen's Universe of Energy, Jungle Cruise, Great Movie Ride, etc. I'd hate for her to miss out on these because of their length, especially since she can't ride the roller coasters.

 

[madenon]

If she were to go to the bathroom at set times, would she be fine? In that case it is a pain in the rear, but the easiest way would be to set a watch or mobile phone at alarm every 2 or 3 hours. Especially with her being a teenager, I can imagine she's even that more worried about accidents. Pads can be an option, but if she's anything like me, she'll flat out refuse or be feeling very concious to ashamed.

I can't feel my bladder either, or that is; untill it is too full. The set times worked great for me untill I also got problems emptying. At the moment I'm using self-catherization (on the waiting-list for a special operation). This is a form of emptying the bladder with a small catheter at the bathroom-visits only. So just like "normall", it only takes about 3 minutes and no things or worries in between 2 batroom-visites. It is a threshold to get over, but looking back I found it the most soothing option for me. It was very easy to learn and do. Still I will have to look at the time, but no more worries about "what if". My advice; talk to a urologist if possible! They tend to have an eye and ear for the feelings that can come with this and can help you look at options for her at WDW and if wanted; at home also. It is nice and all to have a theoretical solution, but if your daugther wouldn't feel comfortable with that solution, it isn't really the answer for her and maybe there is something that fits her better. This things are very personal. What might be a great thing for me, she might hate and vice versa. My experience is that a urologist who (also) threats kids has a very open mind about these things.

Also there is a way of "manipulating" the bladder by which she can empty the bladder by putting the right pressure on the stomach with a hand. It is very easy to learn and do, which also could be an option if she doesn't only not feel when she needs to go, but can't go at set times.

 

[shades]

Perhaps she would be more comfortable with long (ankle length) skirts (like this: http://www.oldnavy.com/browse/product.do?cid=15294&pid=484120) with some spandex like bike shorts underneath to hold thicker pads securely in place. Then she wouldn't have to worry about the "lines" showing on the back of her shorts/pants. The long, flow-y, type skirts will also allow plenty of coverage to manuever around in rides that require one to sit low and/or with legs apart (like Space Mountain).

 

[Selket]

I can't suggest anything to help with the particular issue. It did occur to me to note that you need to have her present at Guest Services when you go for the GAC but she doesn't have to be at the counter with you and explain her own situation. She could be sitting on the benches inside or something - perhaps engaged in conversation with a family member so she isn't upset by it.

I also thought that some folks type out a note and HAND that to the CM who can just read what accomodations you seek. That way you don't have to detail her bowel issues to everyone within earshot. I think this is what I would do in that situation. I think I would say what you mentioned in the original post (car accident, etc) plus what would help her in the park.

I personally would go to the MK to get the GAC - I just think they are all around better there but that is IMHO! The ones I've dealt with there were not only professional - they were just fantastic guys and really made my day.

 

[dyna]

I'm going to suggest something to all of you who has toliet issues and need a pad or depends. Being in the FL heat all day with that paper stuff rubbing sure can make a very sensitive part of the body hurt. All that sweating an naturally staying damp from sweat I would take along a tube of vagisil or diaper ointment something to use to keep from getting sore there. Yhe vagisil has saved me many times very soothing once I was already sore.

Just one of those things I do anyway even without toliet issues .

Make sure DD drinks plenty of water too I know it can be hard to encourage someone with toliet issues to drink cause they are afraid they will have to go more but she doesn't need to get dehydrated either that can be worse than embaressing herself for lack of better term.

Something else to remind her of is the family already knows and understands the problem not gonna make an issue out of it if she does have an accident an she is MILES from home the others in the park she is NEVER going to see again anyway so their opinion doesn't matter.

Hopefully you getting enough good advice that you will find something that works and DD and you will be able to relax an enjoy the whole visit at disney. We all know what can happen when we nervous only tends to make us go more.

 

[SueM in MN]

A website called The Bedwetting Store has a lot of products that might be helpful. It was begun as a place to buy alarms and similar products to help children with bedwetting, but a lot of people with disabilities have found some good products there.
They have watches and timers that people can use for timed voiding (some have vibrating alarms so they can be more discreet). They also have absorbant waterproof cloth briefs for men and women in adult sizes. They are rather expensive, but my youngest DD has some of them and they are very nice. They will hold up to 5 ounces of liquid.
For nightime, there are Goodnights, which are sort of large sized pull ups. The largest size of those goes to 125 pounds.

As for changing clothes, she could store a change of clothing either in a locker or at First Aid. Even if she feels like she doesn't want to stay in the park if she had an accident, she would have some dry clothes to change into without carrying lots of stuff.

 

[LSantos411]

Thanks for all the support! I've spoken with my DD, and she seems open to the idea of using some sort of protection to avoid an embarassing situation. She has said that no matter how hard she tries, she can't seem to go when she doesn't feel like she has to, and so when she does, she has to go a lot. She says (in typical teenage dramatic voice) that having to run to the bathroom "every 5 minutes" will "ruin her trip". Basically, she seems to just want to be able to have as normal a trip as possible. At home, we have gone so far as to put a waterproof mattress pad on her bed, but she'd obviously like to avoid dealing with all that at the resort.

Thanks again! You guys are great!

 

[LSantos411]

Just a brief update: we've tried to see if we could time how often she needs to use the restroom, but there is no discernable pattern. We visited a urologist monday who gave her a drug called Ditropan XL, but so far, we have seen no change at all, aside from a dry mouth (apparently a common side effect). He also suggested using pads. She has a followup appointment in 4 weeks (unfortunately after our trip).

We tried using some pads, but they didn't seem to work very well... not enough coverage or capacity. She's become very upset by the whole ordeal, so hopefully we'll be able to find a solution that will keep her dignity. Unfortunately, she's had occasions where she's had to use the restroom only 15 minutes apart, so any length of time could pose a problem.