Baby Hirschsprungs Disease Investigation

[PurpleRayne89]

8 month old struggled to pass stools since 3 months. Has gotten progressively worse since weaning. Can’t poop without Movicol. On 120ml a day which is 2 packets. Max dose for under 2-years old. Hospital appointment at paediatric gastro clinic today and they suspect HD as the constipation with the regular explosive poops. They will speak with surgeons to discuss next steps and contact me within 4-weeks. I pray he doesn’t have HD but my gut tells me he does.

anyone with similar experience whether you have HD or a child diagnosed. Need some information and what to expect. Also, outlook? If he were to have surgery, could he live a normal life following this without constipation?

thanks in advance x

@ILoveMyLifeToday hey, he gets a red rash on his face every morning. On his forehead. He has had this since I brought him home
from the hospital. What is causing your daughters constipation now? Are they not looking into it? It’s a very long time to be on Movicol. I’ve read far too many stories like this.

@Fifi0102 such a long journey it sounds but with a positive outcome. It’s just awful seeing them struggle. What investigations did she have for HD?

@PurpleRayne89
Hey there, my son is having very similar symptoms to what you’re describing and I’m really struggling to find much info online. Could your share the outcome of your baby’s tests and investigations?

@Puki Hey. I am sorry to hear your experience. My son was on movicol (2 sachets a day) for around 6 months. He had a contrast enema to see the bowel and intestines. Results returned as normal. He was put on the waiting list for a biopsy for HD (still on there) and still under the care of the gastro team at the hospital. However, just after his first birthday, he started to poop normally, 3-4 times a day with ease. It appeared things spontaneously resolved themselves. However, he’s now 14 months old, he has started to suffer constipation again. I’ve started back on the Movicol to help to soften the stool as they’re formed and hard to pass. He mostly constipated on the days he’s at nursery. I assume he isn’t drinking enough water in the day. So I spend the days he’s home giving him lots of water to move things along and it generally helps. We also noticed that cows milk constipated him and he’s intolerant to it. He now drinks sugar free oat milk.

How old is your child? What are the symptoms?

@PurpleRayne89 Thank you so much for getting back to me! My littlest one is 4 months and for the first few weeks after birth everything was normal (passed meconium, pooped daily without any issues) then somewhere shortly before the 3 month mark he started not pooping for maybe 5 days at a time then go crazy and poop 5 times in a single day. His poops are not hard or pebble like at all, they are completely soft I would say, but they are large and explosive.. I am pumping breast milk to feed to him and we’ve been told that exclusively breastfed babies can go up to a week without pooping so we shouldn’t worry. However my son is very gassy, constantly trying to push, and clearly in a lot of discomfort, and this discomfort increases as the days go by and he hasn’t pooped. I need to get my paediatrician to to take his symptoms seriously and stop telling me it’s because of the breastfeeding because I really don’t think that’s a plausible explanation at all.

@PurpleRayne89 happy to hear that your son’s issue is manageable by offering him lots of water! I might try giving mine some water too, maybe that will help.. hard to say cause his poops are soft so not sure.

@Puki your child’s symptoms sound normal and not serious at all. Sounds like a milk colic with standard breastfed baby behaviour. However, he might have a cows milk protein allergy. It’s annoying as you know your child, you know how he is in much discomfort and you don’t really need to be pacified by the doctor. I get it, I was the same. I finally got my referral and it felt better knowing someone was finally listening to me. I think your child’s symptoms will improve over time. When they’re 6 months old, you can start to give water. It didn’t sound like HD at all to be fair. Some babies just get constipated or have trouble with the feeling if needing to go. They wriggle and squirm. I think my son has an issue with this feeling. Your child is still very young, the poop being soft is also a good thing. You should contact someone from the Eric helpline. I found them supportive. eric.org.uk

let me know how you get on. I’ll keep you updated on my journey also.

Hello there, to give an update, I spoke to 2 pediatricians: first one said it is completely normal for my ebf baby not to have a bowel movement for up to 10 days despite being very uncomfortable… second pediatrician said it’s because breast milk is very easy to digest, he’s using it all to ‘grow’ and it takes a while for enough poop to build up in order for him to need to poop (doesn’t make sense because his poops after a week of not pooping are absolutely massive..). Second pediatrician also recommended to give him some formula and/or solids so he would have something more difficult to digest. First pediatrician said the second pediatrician’s advice is a load of rubbish etc etc. long story short I stopped having dairy, just to see what would happen and you were right!!!! He is now pooping once a day!!!! It’s been almost a week! So I just wanted to say a big thank you…. So here it is :) I cannot believe such a small change had such a big impact on his well-being… thank you so much :)

@Puki ahh such lovely news. I’m so glad you followed your instincts and went with what you thought was best. Usually milk protein intolerance / allergies are eventually outgrown. It’s because the proteins in cows milk are too large to breakdown for some. My son started to have a cup of cows milk a day as per recommendations. However, he became constipated, would cry with stomach cramps and developed an eczema type rash on his legs. We now use oat milk. Problem solved. X