Potty training after Hirschsprungs

[yummymummy33]

Has anyone potty trained a child born with Hirschsprungs? This is my first post on here so not sure I'm doing this right but thought I'd try! My DS is 3 this month and was born with Hirschsprungs, we're having a few problems with the potty training so am looking for any one else who has experience with this?

Welcome yummymummy33! Sorry I've no experience, but didn't want your first post to go unanswered.
Can anyone else help?

Thanks reiver. Good to know I've posted right anyway - not being the most technical of people! Anyone got any experience with Hirschsprungs at this age?

I can't help you here but I (TMI coming) was born with megacolon. I just remember Mum always taking me to the toilet and asking if I needed to go. We were always in the toilet .
I remember that when I said I had to go I had to go THEN not later. I can ask my mum what she did if you want?

www.manhattancats.com/Articles/mega_colon.html

I was looking for info on the subject and found this. Not much help but I could not help but post it.

Thanks for your reply - sorry you had to deal with these things when you were a child. Are you ok now? I think this sounds like the opposite of what my DS has, as he had some of his large intestine removed and is finding the control now hes potty training, quite difficult on some days - so we also spend a lot of time in the toilet! It would be nice to hear from other mums who've trained a Hirschsprungs child, to hear what problems if any they've had. Although this is quite a rare condition that most people, including myself until 3 years ago, have never heard of - needle in a haystack springs to mind!

I am fine now. The only thing that is odd is that while most people do a number 2 every day I am every 4 days but thats normal for me.

hi i have a little boy too with hirschsprungs and he is coming up to 3 yrs old. We started to potty train him earlier this year but gave up as he has somewhere between 4 to 10 BM a day. Last week i felt i should try again and we have had great success with him weeing on the toilet! but no sucess with his poo's.....which is very frustrating as he doesn;t seem to realise when he has soiled his pants. we are a long way off.... My consultant told me that it probably wouldn't happen before he was 4 yrs age.

hi i have a son 9 months old with hirschsprungs never seen anything on here about it before. Would be interested in finding out anything about what happens with this as they get older as nobody really tells you anything.

He had pull through op when he was 6 weeks no real problems since apart from plenty of dirty nappies.

Hello! Thanks for your replies - thought we were on our own there for a minute! Thompsli sorry to hear you're struggling with this too, my DS is also dry and has been since he was 2.5 but the poo thing is still very much an issue. Sometimes he manages it and sometimes he doesn't seem to know when its happening until after hes done it in hs pants, which is becoming increasingly frustrating. Especially as most people seem to think its laziness and seem to forget what he went through as a baby. We have an appointment in December so I'm hoping he can help, and also it will be good to know for sure whether or not his toileting problems are down to the Hirschsprungs so I can stand up for him with confidence when people are talking about how many accidents he's had that day etc, ie at nursery. Did your Son have a pull trough as a baby? Was it short segment? Did he have a colostomoy at any point? Sorry lots of questions but its nice to speak to someone who knows where I'm coming from. Stressedmum2 - you're so right that noone tells you anything! My Son had a stoma reversed at 6 months and since then , once they knew he was working ok, no real help since! I have no idea what happens from here - my Son was really well and is now only showing signs of problems now hes potty training. But noone tells you what to expect. I don't think all HD kids have problems but we had a lot of problems after his pull through until they had to do a colostomy when he was 7 weeks, so I don't know if that makes a difference or not. Poor babies for having this horrible disease.

hi gosh its good to hear from other mums experiencing the same thing! sometimes it feels like you're the only mum going throu it and feeling your child is lagging behind in terms of development.
My son had pull through at 12 weeks and didn't start to poo until he was 5/6 months. He had 10cm of his bowel removed but no colostomy. Since then he has always soiled his nappies consistently. I tried potty training earlier this year when my son was just over 2 with little success. I has an appointment with the consultant in april who said this was very early to potty train a child who has had an op on his bowel and that it was more likely to happen when he was round 4 yrs old and not to worry. I guess from a medical point of view as long as they are pooing, then they are doing okay - its the social side of it thats still a prob! my son doesnt seem to know when hes pooing- and its not just one a day! its lots of little poos from just staining his pants...sorry to be so graphic!! but i think once you have dealt with hirchsprungs, talking about poo comes very easily!
does your son tell you when he has pooed his pants? My son doesnt realise at all i don;t think - when i take his pants down for a wee he can be really suprised to see he has soiled his pants, poor thing. its v fustrating but i believe it is down to the fact that hirschsprung babies have to learn how to control their bowel and this develops at a later stage to normal' babies. Do you still have your son in nappies at all? you say he does mamange to poo on the toilet sometimes - does he tell you he need to go? At the moment my son is in pants but i am going through about 5 pairs a day and its quite hard work as i have a 12 week old baby as well - so i am seriously considering putting him back into nappies until after xmas and then perhaps trying again - i worry he will get used to soiling his pants and therefore we'll never get there! I would be really interested to hear about what they say at your december appointment. My son had his op at addenbrookes in cambridge and i know they were interviewing' mothers to try to put together a paper on what to expect from a child with hirschsprungs - but when i went through the experience there was little info although the team that looked after us were lovely. V stressful time.

Sometimes he does say I need a poo and we rush to the toilet/potty and its fine - normally there is a small stain in his pants where I don't think he can hold it all in. Other times it will take him by surprise I think. Also if hes at nursery or somewhere else and like a normal child, trys to hold on to it because hes playing or whatever I don't think he can hold it like other children can for a while. So he needs to learn to go as soon as he needs to if that makes sense, as he can't put it off. We do get a lot of 'staining in his pants'. He will usually say if hes had an accident but its taken a while to get there. I think quite often a bit comes out when he has a bit of wind - again sorry for TMI! He isn't in nappies at all apart from at night but we do go through a lot of pants! I now throw them out iof there too bad, my to my partners annoyance! But its the only way I don't get too stressed by it - cleaning pants can be soul destroying as you know! I definitely think its harder for HD kids as they are missing some bowel. My Soh also had short segment and had his pull thru at 4 weeks, but there were complications which led to a narrowing in his bowel and he got very sick with enterocolitis and septiceamia at 7 weeks and was so malnourished by this point they decided to give in and do a colostomy which I was very grateful for by then, as we nearly lost him. He had his colostomy reversed at 6 months and has been very well health wise ever since. Its the social side, as you mentioned, that worries me now. He seems to be getting left behind and all his friends are now quite reliably toilet trained - not that matters now but it will to them when theyre a bit older. I will let you know what the consultant says in December - I have a feeling he will suggest medication to bulk my sons poos out, as I don't know if your son's the same, but his is always as if hes got an upset tummy, I dont think hes ever had a solid poo in his life. So that makes it a lot harder to control. Fingers crossed these probs are minor and will be sorted before school.

i think you are right about throwing the pants away....i will feel less guilty about it from now on! i will carry on with the pants as no point holding him back by keeping him in nappies during the day.

My son will turn 4 in a couple of months and has hirshsprungs disease - it was diagnosed soon after birth and he had the pullthrough operation at 6 months (short segment, 20cms was removed). We have been potty training him since he was 2 years 7 months and have found it really hard . Since he was 2 he has had constant problems with his bowel getting blocked up and required enemas and a manual evacuation operation to clear his bowel. He is on a combination of permanent laxative doses. He can now control his wees (he didn't find that too hard) and does most poo in his nappy overnight, but always during the day he soils 2-4 pairs of pants (going up to 6-8 at worst). When his bowel gets blocked up, we know that the soiling is overflow from chronic constipation (newer poo flows round a hard lump that is stuck) but it is worrying that this still happens when his bowel is clear. He has frequent sore bottoms and there are also emotional effects of his condition that affect his behaviour - he will sometimes run and hide when if you ask to check his pants so we and his nursery have to approach this very sensitively. It seems that all we can do now is keep his bowel clear using medicine and keep encouraging him to sit on his potty if he feels a poo coming, whilst keeping our fingers crossed that one day he will manage to control it. With school less than a year away, it is quite a concern for us and I'm now working on setting up the support he is likely to need for the future. He has been treated at Birmingham Childrens hospital and they have been very good, he has a bowel management nurse who I have telephone contact with weekly to fortnightly - a big big help and support for me. They did warn us at the start that it takes a lot of patience to potty train a hirschsprungs child, though I didn't know it would be this difficult. It is important to understand that although operated on, the surgery is imperfect and the problem not limited to the absence of ganglian cells. I have read online that muscle pressure in hirschsprungs bowel is always far weaker than a normal bowel. The soiling problems are undoubtedly related to their condition, they will always have a "hirschsprungs bowel". I too throw away heavily soiled pants, I run the washing machine each night to wash them all and if staying in a hotel I have to wash them out in the sink - I do find it very difficult - and I always have to make sure that my son doesn't hear me complaining about it as none of this is his fault and he needs so much love and encouragement from me to deal with this. It is his illness at the end of the day, not mine. I worry about his future.

hi this is my first post on here my son is 7months old and was born with hirschsprungs. he had a pull through operation at four months old; the operation was not successful and resulted in him having to have a colostomy.
after several xrays and biopsys the doctors said that he has a narrowing in his intestine and do not know what the next step for my son is...

just bumping this..when ds was diagnosed with hd at 5 weeks old (march 07) nothing was around on mn BUT I just searched and there seems to be a few mums about with hd lo's.

Ds has short stem, this was corrected but enterocolitus mant he had to have a stoma fitted. This reversed in oct 07 and he is now 23 months old. Several episodes in hospital etc but he is doing well.

Not atempting to potty train him ( told not to by surgeon till at least 2.6 yrs/3 yrs) yet and taking one day at a time when I do..(hopefully...)

Just checking how everyone and their lo's are doing..?

Hi. My daughter Jersey had Hirschsprings and as a nurse I new she had it when born but we couldnt get her diagnosed until she was 7 months old - thats a whole other story. Anyways, she had a bowel resection with pull through and her surgeon told us she would struggle with potty training and not to attempt it until the child was really ready. My now 2 and a half year old can tell me when she is wet with "pee pee or a stink" but it has taken us months to even be tolerant to sitting on the potty. SHe finally sits on the potty and has had BMs occasionally on the pot, she expresses she wants to go, but then doesnt have the patience . . .when she is playing with other kids she doesnt let anyone know until the diaper is soiled....WE dont want to be too pushy, she still has night terrors from her hospital experience, but we want to get her on the potty . . . any advice?

mommyjess,ds has hd and we are due to see his surgeon for a routine check up this month. When I last saw him (and also after ds stoma reversal op) we were told not to rush PT and to not even attempt it till he was beyond 2.6 yrs..maybe 3..

When I see him this month im going to seek advice and some updates.

IMO,maybe your dd isn't ready yet and it may be too soon to be PT her..? maybe hold back a wek or so and try agin, keep doing that until you get success..?

Im prob not much help as im at the same stage as you, BUT tbh im in no rush to PT ds....

Okay, lets see if I can remember when my little one was 3... My son was born with HD and we had problems with the soiling (still do at age 6 1/2) at 3 he needed lots of reminders and time to sit on the potty. Learning what food would help hime go was very helpful, so I'd say first start to track what he eats and when he goes poop and how much. Keep a little notebook, takes time I know but it took us years to figure out what a huge difference it makes. Also, let him know where it belongs and get super excited if he ever goes in the toilet, let the whole family support him in going in the toilet. Know my son had to wear pull ups for a good while, until he was mature enough to know that poop on his body was not right, yucky and the poop can burn their soft skin. So, around 4 - 4 1/2 is when we switched to underwear in the day and underjams at night which he still needs/uses at age 6. He still has accidents, because he know when he needs to go but he can feel the poop on his body. So, we have him take himself to the potty and put his dirty underwear in the sink and then he has to push the poop out because if it's leaking out his body want to get rid of it and needs his help. Now, if he has an accident and takes himself to the potty he does not get in trouble but, if we notice and smell him first, because he's ignoring the fact that he is dirty he gets in trouble. The punishment is usually losing a train set since he has a few and loves them so much or no tv, computer, things like that. Yet, he does get to earn them back by taking care of his body as we refer to it. But, you can't forget to praise the good or you will get more "bad" ie - Mess. This is something we as a family have to deal with until he is old (mature) enough to handle it himself. Right now our problem is that he just dislikes going because it's no fun and he misses out on stuff sometimes. Every teacher he has knows his condion and I send him to school with a backpack that has ever thing he needs incase of an accident, actually we take that backpack with us every where we go. Just a little bit of what I've been through.
Good Luck with your child.

Hoping to relaunch the thread on potty training after HD, as I am in desperate need of advice...

Our almost 4-year old DS was diagnosed with HD soon after birth and had pull-through surgery when he was 10 days old. He's been well since although he continues to stool frequently. He goes on the potty when we ask him/cajole/bribe him into it, but rarely says himself when he needs to go. As a result, his underwear/training pants are usually soiled by the time he gets to the potty. If I ask him why he was too "late", he tells me "I don't want to talk about that", so I have the impression he is starting to realize that he cannot fully control his bowel movements and that it has become a bit of a psychological issue for him - obviously, I have been breathing down his neck a bit too much since I want him to be able to go.

On top of the potty training issues, he also suffers from some "rectal prolapse" (perhaps compounded by the frequent potty sessions).

Does anyone have any good advice to share to help support bowel control? Are there any therapists in the London area who could help work with him to train his muscles and improve the control? He's starting nursery in a few weeks and although we have explained the situation, the pressure is on to make headway sooner rather than later...

Any experiences or advice are most welcome!!

I have a 20 mo. old grandson with HD. i read to see what can be expected
for potty training. A healthy older grandson did not potty train until almost
3 yrs. Likewise, my daughter's friends had boys a similar age potty training
later than my generation. I was surprised any attempts were made on an HD
baby before age 3. Cheer up, though! After ours came along, we found out
of people we knew for 20 years that have had HD. Eventually, they grow
into it. And, thank you, JessicaZ for letting us know a journal is worth the
time.

My daughter is now 5 and was diagnosed with HD at 4 weeks old after falling very seriously ill (she was never right from birth) and had the pull through surgery at 5 weeks old. She still soils but finally is being more successful on the toilet pushing her poo out. However, this needs huge encouragement from me and her dad and is obviously still not coming naturally for her. She is supported in school and the council has provided funding for a part time member of staff. Whether the school will get this funding for the next academic year remains to be seen with slashed budgets etc. The soiling is very frustrating and I worry about her social acceptance as she grows older.

Hi, I'm new to mums net and not sure if this thread us still going? I'm looking fir some advice about my sin with Hirschsprung's disease. We have been toilet trading for over two years, and he turns five in November. We have had very little support from surgeon, and got the health visitor involved in February, as I was concerned about him starting school and still soiling his pants. We were told to carry on with what we were already doing, and they would not be concerned until he was 7. He had now started school and has come back 4 days with soiled pants. I have told them that he needs to be told to go to the toilet after each time he eats as this us what we go at home, and really helps to lessen the amount of accidents. I am not sure if they are reminding him, and they obviously aren't checking or changing him. My don is very reluctant to go on the toilet, and can at times be a battle, and he won't tell someone if he had had an accident.
Are they allowed to change him? Should they have plans in place? Should he be under the senco and school nurse?
Thanks in advance for any answers. I'm starting to feel a little hopeless ??