Anyone trying to/has potty trained their child with spina bifida occulta?

[Mrsmitch80]

Hi,

My daughter is 2.5 and has sb occulta, she was also born with an imperforate anus which has now been repaired.

I'm looking for positive stories, I feel like giving up at the moment. She'll wee and poo on her potty if I sit her on it every hour or so but won't ask to go on it if she needs to go. We have made progress as she tells me when she's been now but it's hard work!

Xx

 

[BabyBoo36]

I'll be watching this with interest as my LO has SB meningocele.

I would say the fact that she tells you when she's been is really positive! My friend's little lad didn't even start potty training until he was nearly 3 and he has no medical issues. Perhaps she's just not quite "ready" to potty train - after all, they all do it at different ages x

 

[Mrsmitch80]

Thank you for your reply, I'm thinking she's not quite ready but I only decided to give it a go because of her sowing a big interest in the potty after seeing the other kids at nursery going. I put her on a few times and she produced so felt guilty leaving her in nappies when she could go on the potty

The first 2 days I tried were great, but it's all gone wrong today when I decided to see if she'd tell me when she needed to go. She asked for her nappy on this afternoon and told me she didn't want to go on her potty so I've left it for now. I'm just going to leave the potty in the corner of the room so she can sit on it if she wants.

It's just so hard isn't it, they don't do books on potty training for sb kids! Xxx

 

[BabyBoo36]

I think potty training is hard enough, but throw SB into the mix...........not quite sure how we'll go about it with LO. She had no nerve involvement in her SB, but we won't know for sure about bladder/bowel function until we try potty training.

Have you ever been on www.spinabifidaconnection.com? Might be a good place to post your question? I get loads of advice on there.

I hope you don't mind but I asked my Mum your question. She's an ex-childminder - what she doesn't know about kiddies could fit on as postage stamp! She agrees with you that with your LO asking for her nappy back, she's prob just not quite ready, but doesn't sound far off! Good luck anyway xx

 

[Mrsmitch80]

Thanks for the website, I'll have a look at that. Think I've figured that when my li gets tired she wants her nappy on but wants to be a big girl in the morning and go on her potty so I think I'll just let her take the lead.

My daughters nerves seem much better than initially thought as we were told she may have no sensation and would not be able to tell us when she'd been but she can!

I even got woken up at 2am this morning by her telling me she needed a new nappy because she'd wee'd and it was wet! Xx

 

[BabyBoo36]

That's really good! Freya seems to have some sensation when pooing - she pushes and grunts like a "normal" (hate that word...) child. Also, when she had her surgery, the nurses on the ward said it was a good sign that she was only going once a day, as a lot of children with SB continously leak as they don't have the control to hold the poo in. It means she does have some control, it's whether she has enough.

Her neuro-surgeon also says the signs he would look for, for bladder dysfunction are continuous dribbling of wee, and/or a poor urine stream - she has neither, so I'm hopeful x

 

[Mrsmitch80]

I was worried about constant leaking but Alice has the opposite problem luckily! She has movicol and senna daily and it keeps it under control.

We had some urodynamics done to look at alice's bladder function, they filled her bladder twice, once it emptied normally and the second time it didn't fully empty so they weren't sure what was going on. We were due tohave another lot done but as she does a full wee and can stay dry for at least an hour afterwards they're not worried.

I hate saying "normal" too, I see alice as normal. Sounds as though it's all positive for Freya so far xxxx

 

[Tegans Mama]

Hello
Tegan has myelomeningocele - the most severe form of sb. She's three and a half and fully potty trained it was/is not easy and involves a variety of medications for us (she has tolterodine to stop her bladder spasming and is catheterised three hourly, and peristeen anal irrigation once a day to have a bowel movement and keep her clean).
She is completely doubly incontinent so her being in pants at such a young age is quite a feat, and a lot of hard work. In my experience though, faecal continence was impossible with movicol. We swapped onto dulcolax suppositories when she was 2 as movicol made her much too loose.
If you have a urologist or continence nurse, remember they are the key - we were told to try to pt in the traditional way and progress onto more medical routines of all else failed but with a child with continence issues, that's very hard.
Anyway, good luck! I know there are massive differences between occulta and myelomeningocele, but I thought I'd throw my knowledge in

 

[hapi2bhealthy]

I was worried about constant leaking but Alice has the opposite problem luckily! She has movicol and senna daily and it keeps it under control.

We had some urodynamics done to look at alice's bladder function, they filled her bladder twice, once it emptied normally and the second time it didn't fully empty so they weren't sure what was going on. We were due tohave another lot done but as she does a full wee and can stay dry for at least an hour afterwards they're not worried.

I hate saying "normal" too, I see alice as normal. Sounds as though it's all positive for Freya so far xxxx

Please forgive me for butting in- I'm not a mom yet, but I am a teacher doing her masters in Special Education (it's my passion), and I just wanted to say that I HATE the word "normal" too and I always say "typical" instead, because it's just insulting to say that a child is not 'normal'...and also wanted to say good luck with it all! so much trickier with special needs BUT in my mind they are all kinds of EXTRA beautiful because they AREN'T typical!

Hope you ladies don't mind, just wanted to offer some support!!

 

[lady3]

Hi there,

I just wanted to add to this as I've been looking around for bowel continence lately due to my ds being born with an anorectal malformation with possible tethered cord (we're getting an MRI when he is 6 months to know for sure).

There is a very good website that might be useful to others here to look at. The hospital is in Cincinatti Ohio but have a Facebook page. The doctors have recently put on two live question and answer sessions for bowel control for children with sb and they have the recordings of the questions on their facebook page.

The link to the hospital is: https://www.cincinnatichildrens.org/service/c/colorectal/default/ I've just watched both recorded question and answer sessions and it's very impressive!! I highly recommend watching it. And for people in the UK, the doctor has worked with a couple of doctors here and helped train them.

I'm sure they'll do more of these sessions as well as it seems to be very popular so you can ask your own questions at the next session.

 

[jojo2605]

My son was born with high end Imperforate Anus and we have been told that he more than likely will be completely doubly incontinent and expect him to be in nappies until he is probably about 10, where they will look into procedures such as an ACE and Mitrofanoff to keep him clean.

I am amazed that we are told this when it looks (as Tegans Mama has stated) like there are bowel management options that we could be trying (if not know, a little down the road)?

OP I'd be very interested to hear more details of the severity of your daughters imperforate anus if you didn't mind sharing?

 

[lady3]

Jojo did you look at the Colorectal Center for Children in Cincinatti? The doctors there have just trained a few doctors in England to start a bowel management programme. I am very interested in it and will look into it if needed. My son is still too young to know what his future holds, but as he has a low IA, chances for bowel control are very good.

In the bowel management courses, the doctors look at your child individually to come up with a programme so that he doesn't need to wear nappies past the usual nappy wearing age.

I know the doctors in the UK are based at Leeds Hospital and Leicester Hospital.

Let me know if you want any more info. I can private message you some.

 

[lady3]

Here's the link for the facebook page. https://www.facebook.com/CCHMCColorectalCenter

If you scroll down on their wall, you'll see the recordings of the question and answer. There are lots of questions from people about IA, not only spina bifida. Within the first 20 minutes or so the doctor talks about the doctors trained in England after someone has asked him.

 

[Mrsmitch80]

Hi all,

For those who also have a child with IA there is another useful Facebook page "imperforate anus support group"

My daughters IA was very low with a perianal fistula, she needed a colostomy though.

The potty training is still proving to be a bit of a nightmare but I think we'll get there eventually xx

 

[lady3]

Hi all,

For those who also have a child with IA there is another useful Facebook page "imperforate anus support group"

My daughters IA was very low with a perianal fistula, she needed a colostomy though.

The potty training is still proving to be a bit of a nightmare but I think we'll get there eventually xx

Thanks for that! I'll be checking it out. I've been hoping and looking for something that had some people from the UK as it's very different than the US site I've joined due to our socialised healthcare.

 

[Mrsmitch80]

Just an update! My daughters potty training is going well, it's a ling slow process but we've decided not to push it and it's working! I can't remember the last time she did a poo without asking to do it on the toilet or telling me as soon as she's done it and asking for her pull up to be changed. She doesn't seem to have wee accidents if she's got a naked bum but that's with me being very vigilant. I'm heavily pregnant at the moment so when I've had the baby and are more mobile I'll give her more knickerless time and see how we get on! Xx