Anyone's child partly incontinent?

[BlueHadeda]

I'm especially interested in bowel control. How do you handle that?

And how do you, as a parent, cope?

 

[jojo2605]

Hi, my son is doubly incontinent. He is 3 years old and in nappies. If you need to talk about anything IM me.

 

[Tegans Mama]

Tegan is doubly incontinent but her incontinence is medically managed. It was hard when she was younger but now we've got it all sorted it's getting much easier

 

[BlueHadeda]

Thanx to you both. I'm just hands in the hair about my 9-year old. I'll take her back to the pead after the New Year.

 

[Tegans Mama]

Does she have a urologist? They're generally the ones who deal with continence problems

 

[BlueHadeda]

Yes, thank you, she does have a urologist, and I guess we'll at some point get the botox again for the bladder. But that doesn't bother me or her as much as the bowel incontinence. The urologist just said that's not his speciality. The pead just prescribes lactulose/movicol. The GI said he can't do anything more than what the pead does. The neurologist prescribed suppositories. The neurosurgeon said he just operates, he doesn't deal with the aftermath. That leaves us with nothing that works and nobody that can/want to help. I'll go back to the pead and explain our predicament and ask for some more help or a reference to someone that can.

 

[Tegans Mama]

What suppositories does she have? Tegan has Dulcolax (sodium picosulphate) and they work really well. I'm in the UK (Tegan has Myelomeningocele, the most severe form of SB and is paraplegic) and Tegan's urologist is amazing and helps us a lot. Have you heard of the ACE procedure? They do that as a last resort over here. Is your daughter catheterised? Tegan is cathed three hourly which along with medication means she is dry during the day and she has an indwelling catheter in overnight for constant drainage so she's dry overnight also. I think you need to seek a second opinion and see if your hospital has a continence nurse because they are the ones that help if the urologist can't

 

[BlueHadeda]

A continence nurse? Now that's a new term I've never heard before! Gosh, I wonder if we'll have someone like that here (I'm in South Africa)? I'm definitely going to try and find out, thank you!

My daughter doesn't need catherisation so far. Since her untethering, her urinary incontinence has improved immensely. From being totally incontinent at night, she's now always dry the whole night! And from having a couple of accidents on most days, she now has an accident about once or twice a month, plus a little bit of leakage on some days. For this, she wears dry like me (pantyliners for kids). The botox worked well for her, so I think it should be worth it for those last few accidents. She's also tried a couple of the medications, but the side effects interfered with her schoolwork.

The suppositories she has, is also dulcolax. It worked okay for constipation, but didn't stop her leaking little bits. And that's what I'm trying to get under control. Those little bits of leaking. Because it ruins her underwear, and the smell can be quite off-putting, so I'm worried about it happening at school. At the moment, it happens about 2-5 times a week. It seems to happen if she's constipated or not. It seems almost worse when she's not constipated. The other problem with this is that she still have most feeling down there, so she fights me on invasive procedures like the dulcolax. It only happens with ALLOT of tears, fear and screaming in pure terror. She's quite stubborn and refuse to acknowledge that that is better than the alternative (to soil the underwear).

Oh and yes, thank you, I've heard about the ACE and mitranoff procedures, but she's not (yet) in need of them, I think. I read about them on the spinabifida connection site. Are you on there?

 

[AllieM]

My son had the ACE surgery just before he turned 5 and it has been a blessing! It really improved his quality of life and got him out of diapers for good. My was born with an anorectal malformation as part of his overall VACTERAL diagnosis.