Child with neurogenic bladder

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My 9 year old developed neurogenic bladder as a result of transverse myelitis. It has been very tough for her to adjust to and accept wearing diapers, having frequent leaks, and getting UTIs/kidney infections. Any advice on how to emotionally support a child going through this?

 

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Just be supporting and understanding. She is going to be very self conscious and worry over it alot. I was urinary incontinent during the day until I was 10 due to sensory problems. I was super worried about it all the time. I was worried other kids would notice the diapers, and would make fun of me. I was worried I would never be able to control when my bladder emptied. Be supportive, show her this forum and explain to her there are many children and adults who deal with the same problem and dont let it stop them. Though I gained control over day leaks at 10 and nighttime control at 16, at 22 I had a tbi that damaged the nerve center that gets the signals from the bladder. It took me awhile to come to terms with it, but I found sites like this one and groups on facebook that helped me realize that it isn't as uncommon and doesn't have to be a life altering issue. I wear diapers so what. Just means my underwear does more.

 

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having in incontinence and wearing diapers can be rough for us but a child of 9 years old and having to wear diapers can be pure hell with peers and classmates not to mention sleepovers and camp kids can be very cruel to each other

 

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I would suggest two things for her, find some good therapy and make sure you are picky with the therapist that Maurine your daughter feels good about them and they are listening to her and you!! Then I would go shopping for her and find clothes that help her feel good about hiding her diaper and that she can remove easily if she’s changing herself. They also make diaper covers that might help hide the diaper and will look like underwear if it happens to peak out. She is at such a tender age and being a girl is even harder so I would suggest making a therapist appointment a priority. Best of luck to you all and stay in touch, we are willing to help where we can!!

 

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This may seem stupid, but your could try wearing one for a day and self evaluate your emotions. You can also see the obstacles that she will face as well. The old saying of “walk a mile in my shoes” kind of thing.
If not, I always say: someone who breaks a leg needs crutches to get around. Diapers are our crutches so we can get around.
Has she been to a urologist? Have they prescribed any medications?

 

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That's a wonderful idea...I'll try wearing one myself to see what she is experiencing. Thank you for the suggestion.

To answer your questions, she goes to both a urologist and neurologist regularly. She's been on several different medications. They work to a degree to control the urine, but they have all caused retention, leading to UTIs and kidney infections. It's very frustrating...

 

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I'm also going to look into therapy for her. Thank you all for your suggestions.

 

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That's a wonderful idea...I'll try wearing one myself to see what she is experiencing. Thank you for the suggestion.

To answer your questions, she goes to both a urologist and neurologist regularly. She's been on several different medications. They work to a degree to control the urine, but they have all caused retention, leading to UTIs and kidney infections. It's very frustrating...

All the medications that I’ve tried had terrible side effects. Head aches, stiff neck from head aches, unyielding thirst, bad moods, blood pressure issues, even worse incontinence, and on and on.

 

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And vision issues too. And be sure to let her know she isn’t the only one. There are some really amazing folks here that are always helpful and most offer advise that only personal life experience can provide.
We are all here to be supportive, listen, offer suggestions and be a friend.
So glad you decided to reach out. You aren’t alone. Allot of good people of all ages here in this community.
Look forward to hearing more from you.
Kind regards,
Jim in Maryland

 

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very well said

And vision issues too. And be sure to let her know she isn’t the only one. There are some really amazing folks here that are always helpful and most offer advise that only personal life experience can provide.
We are all here to be supportive, listen, offer suggestions and be a friend.
So glad you decided to reach out. You aren’t alone. Allot of good people of all ages here in this community.
Look forward to hearing more from you.
Kind regards,
Jim in Maryland

 

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Support is difficult however stressing there is an identifiable medical reason should help. Stress to your child the issue is not a major issue even though they may not know others their age with the same issue to deal with. I wish I knew I suffered from a neurogenic bladder at that age as I feel I would at least of known there wasn’t anything I could do to prevent wet beds or pants. I wasn’t diagnosed untilI was in my 30’s. Dumb doctors kept assuring me growing up that I would outgrow the issue.

 

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@risas All the advice you've gotten so far is great advice but I would add that while shopping for products, most likely online. Involve her and then remind her that there wouldn't be so many products to choose from if she was the only little girl to have issues. Sounds though that she's getting the best thing she needs, your loving support.


Al

 

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@Alpit hi Al, yes, good idea. I know that when I do the shopping at our local supermarket and see the shelf full of incontinence products for men, it gives me a bit of a boost knowing that there are others out there. After all, the shops only stock what they can sell. Cheers Phil

 

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Al,
Great advice. I will start making a point of showing her all the products out there. Unfortunately, we don’t know other children with neurogenic bladder, making her feel very alone.