Any parents of children with continence issues?

[jojo2605]

Hi Ladies,

Don't normally come in here much really but I'm struggling a little at the moment and was hoping there may be more people on this board who are going through something similar.

Sam was born with Imperforate Anus which has now been anatomically corrected but over the last couple of appointments with his (new) consultant it has become clear that they don't expect Sam to have any control over his bladder or his bowel

To be honest, I think we were living in a sort of bubble really as his surgeon who we've been dealing with although lovely, hasn't really been preparing us for what we should have been expecting as regards to Sam's continence so the only info I have had is what I've managed to fathom by researching Sam's condition.

We've been told that he will probably be in nappies till 10 ish as boys don't apparently care too much about being in them until this age. At this time they will look at different solutions to get around his lack of control - again it's only by researching myself that I even know what we might expect to happen.

I just feel sad in some ways. He is such a precious little boy and I just really hurt to think how unkind kids can be at school etc and I don't want him to have to go through this He also is an amputee and walks with a prosthetic. He is doing fabulous with this & I don't really worry to much from that side of things as I know long term, is life won't be too affected.

Are there any moms out there who are dealing with this sort of thing? It would be good to talk

 

[Emmylou27]

Hi

Struggling with exactly the same thing at the moment - well, have been since Daisy's last urology appointment (Oct 10!) in Brum actually.

She pretty much constantly leaks urine and has no bladder or bowel control. We luckily don't have to cath and have been told to potty train as normal. Not entirely sure how at the moment when we can't even get her bowel movements regular and struggle to get her to take movicol but hey, I guess we'll get there.

I really don't want to accept she'll have these issues as so far she's proved the doctors wrong on so many levels; I think I keep hoping she'll just 'grow out of it' although I know deep down it's not true.

What sort of things have they told you to expect with your LO?

 

[jojo2605]

Thanks for your response hun it means a lot!!

It's weird, a lot of what you have said relate to Sam! Who are you seeing in brum? and what condition does your daughter have?

Sam is the same, he can't control his urine and he just pees as and when it comes (he called it something today but I can't remember what it was!) He tried to silverline it by saying that this way his bladder doesn't ever get full so it means that touchwood his kidneys will keep healthy - which is the main issue for them.

We've been told to put him on the potty, etc, just so that he is totally comfortable and explores all areas of toilet-going as anything will help with whatever muscle control he has if any. He also has to take Movicol every day otherwise he gets constipated. We have no choice but to mix it with some water then put some apple juice in it. He will not drink it on it's own in there, he can taste it!

They haven't told us anything other than to expect him to be in nappies until he's ready for the other options. As far as the other options go, I'm not sure!! I know of the ACE procedure, but only relating to bowel, I'm not sure how this would work with the urine side of things. Have you heard of this?

 

[Lottie86]

My son is 28 months old and has no idea at all when he wees or poos. He's on a big dose of senna plus 2 sachets of movicol a day to keep his bowels working (which is a huge amount especially as he's so teeny) and it's hit or miss whether he poos 'normally', is explosive or still doesn't go, gets constipated and then needs suppositories. We have absolutely no idea when/if we'll be able to potty train him in the future.

A fair few of the other children his age we know have either recently become potty trained or are part way through so it's becoming more of an obvious issue as he's getting older although thankfully with him being so small people who don't know him assume he's much younger than he is so we don't get too much judging in baby changing rooms yet.

Our 10 week old daughter also has bowel issues and has been on laxatives (lactulose and senna plus suppositories when required) for weeks already so looks like she'll prob have similar issues.

 

[Emmylou27]

We see Mr McCarthy in Brum - got our next appointment in October. I've heard of the ACE procedure but only from my husband as I didn't go to the last appointment - it was less than one week before I had Alfie!

Daisy has Spina Bifida and Hydrocephalus (although isn't shunted). We're actually really lucky as she can walk to a degree and isn't developmentally delayed so the only real concern at the moment is the incontinence. I keep trying to remind myself that she's doing really well but it's hard sometimes.

We really struggle with the Movicol as Daisy normally won't take it, even in apple juice. When we asked our consultant about it recently she said to mix it in yoghurt so we're going to try that next.

I'm getting a bit concerned about how we'll change Daisy when we're out and about. She's not big, still only weighs about 26lb but I'm not sure how much longer I'll be able to use the drop down changing units with her and really don't want to change her on the floor if I can help it.

 

[jojo2605]

My son is 28 months old and has no idea at all when he wees or poos. He's on a big dose of senna plus 2 sachets of movicol a day to keep his bowels working (which is a huge amount especially as he's so teeny) and it's hit or miss whether he poos 'normally', is explosive or still doesn't go, gets constipated and then needs suppositories. We have absolutely no idea when/if we'll be able to potty train him in the future.

A fair few of the other children his age we know have either recently become potty trained or are part way through so it's becoming more of an obvious issue as he's getting older although thankfully with him being so small people who don't know him assume he's much younger than he is so we don't get too much judging in baby changing rooms yet.

Our 10 week old daughter also has bowel issues and has been on laxatives (lactulose and senna plus suppositories when required) for weeks already so looks like she'll prob have similar issues.

Wow hun I feel for you, watching Sam go through what he's gone through in the last couple of years was so hard, I couldn't imagine having to do it a second time. I really hope your daughters issues aren't as bad as time goes on

Sam is now at the age where potty training is expected too so it's from here on it that things are going to get more obvious I guess isn't it. Part of me couldn't care less what other people think (wll actually I don't care what other people think at all!) it's just I don't want Sam to start picking up on other people's stares,etc

 

[jojo2605]

We see Mr McCarthy in Brum - got our next appointment in October. I've heard of the ACE procedure but only from my husband as I didn't go to the last appointment - it was less than one week before I had Alfie!

Daisy has Spina Bifida and Hydrocephalus (although isn't shunted). We're actually really lucky as she can walk to a degree and isn't developmentally delayed so the only real concern at the moment is the incontinence. I keep trying to remind myself that she's doing really well but it's hard sometimes.

We really struggle with the Movicol as Daisy normally won't take it, even in apple juice. When we asked our consultant about it recently she said to mix it in yoghurt so we're going to try that next.

I'm getting a bit concerned about how we'll change Daisy when we're out and about. She's not big, still only weighs about 26lb but I'm not sure how much longer I'll be able to use the drop down changing units with her and really don't want to change her on the floor if I can help it.

Emmylou I didn't even consider the fact that they won't be able to fit on changing units soon!

I know what you mean about constantly counting your blessings in a way. I know how fortunate we are that we have a really beautfiul bright, lovely boy who can walk with his aid and who mentally is spot on & most of all his health is wonderful. I guess just every now and then we probably venture a look too far into the future and it's only when we see what they may have to face from other people that is breaks our hearts

 

[BabyBoo36]

My 8 week old also has spina bifida (although she has meningocele not mylo). We are having an MRI next week to see if any nerves are involved in her cyst, and she is having the cyst removed on 9th Sept. So far, bladder and bowel may be the only issues Freya has (we have been told we have a 40% chance of them being involved) but we won't know for sure until all her tests etc are finished, she's weaned, and we're trying potty training. So far, her bladder and kidneys are normal on ultrasound, although we know this could change, so we are aware we might end up with continence issues in the future xx

 

[Emmylou27]

My 8 week old also has spina bifida (although she has meningocele not mylo). We are having an MRI next week to see if any nerves are involved in her cyst, and she is having the cyst removed on 9th Sept. So far, bladder and bowel may be the only issues Freya has (we have been told we have a 40% chance of them being involved) but we won't know for sure until all her tests etc are finished, she's weaned, and we're trying potty training. So far, her bladder and kidneys are normal on ultrasound, although we know this could change, so we are aware we might end up with continence issues in the future xx

I've really got my fingers crossed for you hon that all turns out ok with the scan. I presume she can move her legs etc? If so then that's a really good sign.

Was it picked up before birth? Daisy wasn't so it was a bit of a shock.

Try to stay positive - We were told with Daisy that she wouldn't walk (she does), would be developmentally delayed (she's apparently about a year ahead) and would need a shunt for hydrocephalus (she doesn't). The only thing we've got issues with is her bladder and bowel issues and I wouldn't be surprised if she went on to defy that in some way. It's great news that her bladder and kidneys are ok, have they done a DMSA scan yet to check function or is she too little? It's one thing they're always cautious with as kids with SB can have more kidney issues than most - the fact they're 'normal' now is really promising. x

 

[LadyRoy]

Hi Ladies, so sorry you are going through this with your beautiful babies. I don't have any experience with it but I watched a lovely series on Channel 4 On Demand which has a really special little girl with SB who was walking but had bowel issues. She coped amazingly well as did her parents and eventually she was able to manage the ontrol herself albeit manually. It is a tough watch but if you feel up to it I am sure it will give you a lot of hope xxx https://www.channel4.com/programmes/born-to-be-different/4od

 

[BabyBoo36]

My 8 week old also has spina bifida (although she has meningocele not mylo). We are having an MRI next week to see if any nerves are involved in her cyst, and she is having the cyst removed on 9th Sept. So far, bladder and bowel may be the only issues Freya has (we have been told we have a 40% chance of them being involved) but we won't know for sure until all her tests etc are finished, she's weaned, and we're trying potty training. So far, her bladder and kidneys are normal on ultrasound, although we know this could change, so we are aware we might end up with continence issues in the future xx

I've really got my fingers crossed for you hon that all turns out ok with the scan. I presume she can move her legs etc? If so then that's a really good sign.

Was it picked up before birth? Daisy wasn't so it was a bit of a shock.

Try to stay positive - We were told with Daisy that she wouldn't walk (she does), would be developmentally delayed (she's apparently about a year ahead) and would need a shunt for hydrocephalus (she doesn't). The only thing we've got issues with is her bladder and bowel issues and I wouldn't be surprised if she went on to defy that in some way. It's great news that her bladder and kidneys are ok, have they done a DMSA scan yet to check function or is she too little? It's one thing they're always cautious with as kids with SB can have more kidney issues than most - the fact they're 'normal' now is really promising. x

Hey. Yes she can move her legs perfectly - infact she's a strong little madam! Her neuro-surg is pretty much convinced that the nerves to her legs are not involved at all, and she's also escaped hydro. Funnily enough, although she's only 9 weeks tomorrow, the HV has already said she's ahead with her social skills (smiling, cooing etc). She hasn't had a DMSA scan yet - I think her neuro-surg wants to do the MRI first to see if any nerves are involved, and she has an appointment at Manchester's SB clinic in November, where we'll meet the urologist/kidney specialist as well.

Freya's was picked up on the 20 week scan. We were originally told "brain damaged, paralysed, need to terminate etc etc, but 2 days later we had a more detailed scan at St Mary's with her neuro-surg, who said all that was rubbish, and that she was actually not as bad as they said. It must have been awful for you, not knowing - I really feel for you. Daisy is beautiful by the way - a proper little cutie! x

 

[JASMAK]

 

[Aidedhoney]

Alex turned 2 in July, we dont know if he will ever potty train, they are unsure if Alex has sensation when hes peeing, he is also on lactoluse as the stroke has made his bowel very sluggish.
If Alex is aware that he is peeing we will then be left with the issue of how will he pull his trousers up and down with one hand!!

We have our CDT Ped on the 6th think i may push for an mri scan so i can get some answers.

 

[Tegans Mama]

Tegan is 3 years old now. She has spina bifida and hydrocephalus too. Her SB is particularly severe - she is paraplegic/doubly incontinent. We are achieving a degree of continence using 2-3 hourly catheterisation and various bowel meds (movicol/dulcolax/suppositories). She'll never be TRULY continent but this is a good compromise.

EmmyLou, the majority of the time the only way to get a child with SB urinary continent is through regular catheterisation and Oxybutynin/botox. The bowel continence is another issue and we are looking into peristeen (anal irrigation) and perhaps an ACE when she's older. We are more than likely going to have a Mitrofanoff (using the appendix to create a tube from the bellybutton to the bladder so she doesn't have to undress to cath - cathing is becoming quite difficult now, especially since she's older and doesn't have a great deal of trunk control so can't sit on a toilet when we're out and is definitely getting a bit big for changing areas, even though she only weighs 23lbs!)

Although Tegan is paraplegic (she uses a wheelchair and can't walk or stand at all) her continence is one of the biggest issues we face. Stomach bugs are a TOTAL pain, especially unexpected ones.

 

[Mrsmitch80]

Hi all, my little girl is 26 months and was born with IA, single kidney with reflux and a tethered spinal cord (spina bifida occulta) she has had 5 operations to correct the IA and to release her spinal cord. We are due to go for urodynamics in 2 weeks to see how her bladder is doing, fortunately it seems ok as she is able to do a wee and hold it for a few hours before going.

Her bowels aren't great at the moment, she is great at having her movicol - we put it in her morning milk. We're constantly having to adjust the dose do potty training is proving difficult.

I get lots of good advice from the Facebook group - imperforate anus support. There are lots of people on there whose children use ansl irrigation or have had the ace proceedure.

Xx

 

[Emmylou27]

EmmyLou, the majority of the time the only way to get a child with SB urinary continent is through regular catheterisation and Oxybutynin/botox. The bowel continence is another issue and we are looking into peristeen (anal irrigation) and perhaps an ACE when she's older. We are more than likely going to have a Mitrofanoff (using the appendix to create a tube from the bellybutton to the bladder so she doesn't have to undress to cath - cathing is becoming quite difficult now, especially since she's older and doesn't have a great deal of trunk control so can't sit on a toilet when we're out and is definitely getting a bit big for changing areas, even though she only weighs 23lbs!)

Tegans Mama - thank you for this. We have another Urology appt in October and I have no idea what to ask. I didn't go last year as was about to give birth but was a bit surprised when our consultant told us to try 'potty training as normal' as I don't see how Daisy could do it with no feeling and constant leaks. Do you think I should raise the question with them about cathing? I really don't know whether it's better for her to be in nappies forever or have to cath but at least have a shot at being 'dry'. I think they mentioned the ACE procedure last time but to be honest it's only in the last 6-9 months I've really started to accept Daisy's difficulties - think before then I was really hoping they'd go away!

Btw Tegan looks gorgeous - I love the specs x

 

[Emmea12uk]

My son is three and has double incontinence due to spina bifida. His tethered cord syndrome has left him recently with no function in either bowel or bladder at all. He can't even feel it. His poop comes out as he moves around so continuously and medication keeps it moving.

His bladder sphincters are normally jammed shut but spasm from time to time. Medication stops the spasms and increase the bladder capacity before reflux to kidneys occur. Catheters 2-3 hourly are used to empty him.

In the long run most children with no bowel or bladder control will probably end up with the ACE procedure which is actually demonstrated in the born to be different link someone posted, and a mitroffenouff procedure which was mentioned above too. Both can be done from 5 years old but tend to be done later. They are major ops and there are things which can be tried first - like peristeen.

When my son was born he had partial control of both bowel and bladder and as we approached toilet training we had some success - only with poo but he deteriorated quickly and lost the lot. However, he is happy this way. His weed take minutes and are easy. His poo is a problem but I anticipate peristeen or an ace will keep him clean in the future.

 

[Emmea12uk]

EmmyLou, the majority of the time the only way to get a child with SB urinary continent is through regular catheterisation and Oxybutynin/botox. The bowel continence is another issue and we are looking into peristeen (anal irrigation) and perhaps an ACE when she's older. We are more than likely going to have a Mitrofanoff (using the appendix to create a tube from the bellybutton to the bladder so she doesn't have to undress to cath - cathing is becoming quite difficult now, especially since she's older and doesn't have a great deal of trunk control so can't sit on a toilet when we're out and is definitely getting a bit big for changing areas, even though she only weighs 23lbs!)

Tegans Mama - thank you for this. We have another Urology appt in October and I have no idea what to ask. I didn't go last year as was about to give birth but was a bit surprised when our consultant told us to try 'potty training as normal' as I don't see how Daisy could do it with no feeling and constant leaks. Do you think I should raise the question with them about cathing? I really don't know whether it's better for her to be in nappies forever or have to cath but at least have a shot at being 'dry'. I think they mentioned the ACE procedure last time but to be honest it's only in the last 6-9 months I've really started to accept Daisy's difficulties - think before then I was really hoping they'd go away!

Btw Tegan looks gorgeous - I love the specs x

I hope you don't mind me butting in!

I think Daisy needs her urodynamics asap, urgently if she suffers utis. If she turns out to have two healthy kidneys then you could theoretically keep her in nappies. But if any change were to occur due to growth, the first you would know if damage happening to her kidneys would be ill health and the damage is perminant, and can be fatal (if your doctors are really crap).

Catheterizing may not make her dry but it will ensure the kidneys are safe. Cathing early is easier than teaching a child who Is aware other kids don't cath. If catching will be a way of life in the future, then early is best.

If your child can't potty train then catching is probably your only option in the future. Attempting to potty train a child with continance issues is quite risky to your child's confidence and advice needs to be sought from professionals so as not to make your child have any issues with their failure to toilet train.

 

[Tegans Mama]

What Emma said is right, with most kids with SB (even those who are not affected very badly), they have trouble with toileting. Urinary incontinence is almost always present and IMO I would rather cath my child every 2-3 hours than have her go through the trauma of being unable to PT.

For us especially, continence is of massive importance. Tegan will have enough problems in the future because she uses a wheelchair, without having continence issues aswell.

 

[Novabomb]

sorry you all have to go through this I will keep you and lo in prayers tonight