Hirshsprungs disease..

[BITCAT]

anyone have a child that suffers with it and has had corrective surgery. What are symptoms and what happened in your case..and how old were they when was found.

Hi,I would class myself as a pro with hirschsprungs .

Ds is a Hd child.

He was diagnosed at about 5 weeks old (sooner suspected BUT needed confirmed results via a rectal biopsy which took 3 attempts).
He had corrected surgery at about 5 weeks old which resulted in stoma being fitted.

Ds is now 3 yrs old and although is not symptom free (has episodes of enterocolitus) and has had several stays in hospital over the last 3 yrs he's a very healthy, happy,active and adorable boy..

We had never heard of HD prior to ds being born, were told its genetic BUT are unable to find a link in dh & i's family.
Ds's symptoms which lead to the diagnosis included distended tummy,vomiting (esp bile/green which is a big NO NO..) and general unable to feed.

I was so tired following his birth and with us already have dd (then 18 mths) that dh & Imanaged shifts of looking after ds for 3 days till dh googled symptoms and got other results. Finally after keeping one of ds's babygro's he proceeded to show it to our mw who we frantically called when ds was 3 days old saying she HAD to make us the 1st visit of the day.

Within minutes of seeing us a bed was reserved at hospital and we were on route...

Why do you ask..? do your believe your lo to have it..?

Feel free to CAT me or even search under some of my messages from when I was desperate for advice... HTH X

My ds is 7 and has had problems since birth..and has just got worse. They just keep giving him laxatives and it literally just makes hium leak..he doesnt push it out. Doesnt eat much at all and i believe from what the website said that it is much more common in boys. Has had development delay and did used to be sick as a toddler..he is very small for 7, infact his 4yo sister is almost as big as him. Noone will even check for it..i just need to rule things out and was after some advice from someone that has experience of hirshsprungs. He didnt have his first poo till nearly a week after birth. When i googled it and found hirshsporungs and read symptoms, something clicked in my head..because it was so my ds to a t, my instinct says there something more to his problem than the consultant believes. But he has had no tests at all..not even a simple ultrasound has been done. The child is still in pull ups because he just leaks and is so backed up inside..he has no knowledge of when he needs to go.

Hi BITCAT,
Just adding this link to your other thread just incase anyone wants advice for hirschsprungs at a later date. Ties it all together

Hmm..the fact that your ds didn't do his 1st poo for over a week is a worry. I met a fellow hd parents while in hosital with ds and she has since had a baby who is also showing HD symptoms. Not poo'ing for upto 2 weeks. He's ben xrayed but nothing..not to say he hasn't go it BUT it may be a tiny segment of bowel affected. BUT his consultant will check him over time.(he is not 2.5yrs)

So what im saying is that your ds may have HD but small stem (ds was short stem) which means that the bowel is not all affected.

On the linked thread I suggest giving your ds movicol, max dose and go from there. Get the blockage out and then reassess.

You also need more medical advice and help. I see you are based in telford.Ds was treated at Manchester childrens hospital (local to us) and they are very knowledgable on HD, I believe Alder hey also are...Is it worth prehaps a referral there..? A treck I know but at least you are dealing with consultants who have HD experience..?

how wud i go about having him refered to one of those hospitals..i mean im assuming i cant just demand that he is refered cause i really wish i could at this point. Id do the treck if it was going to help ds2.

You do need some more help and advice, like you said on other thread its been going on for too long .

The movicol will go straight through him, thats the idea of it and once he's passd the blockage (if there is one..) you then need to keep going with the movicol daily (reduce the dose though to a dose thats right for your ds..)

I so know how frustrating it is for you...

Not sure how you go about getting a referral. I know my consultant is private also (not sure if thats an option) BUT maybe speak to your consultant and go from there.

Do you visit the childrens hosptal at birmingham.? Dh assumes this is where you would be referred and they also have a large gastro unit..

Hi

Just wanted to add my story. Will try to keep it brief.

My youngest son (now 2.7 months), did not poo until a week after he was born. He was breastfed for about 8 weeks and then bottles slowly introduced. He also struggled to go for a poo - I had to do stomach massage, leg exercises, anthing I could do to try and help him go. He was always uncomfortable, writhing around at night, screaming in pain, would never finish a feed.

When he was a very young baby we took him to a cranial osteopath as he was never settled, he did some work on his head, but always told me he was constipated! The osteopath would do some work on his tummy and this would always lead to a poo or 2 or 3 later in the day.

Basically, the constipation continued to get worse. I kept saying 'he will do better when he crawls/walks etc', but unfortunately he did not move anywhere until he was 1. When he became a bum-shuffler Did not walk until he was 18 months and this made no difference to the constipation.

He got so bad that when he was straining to poo he would sweat buckets and vomit small amounts He would soil a lot and then eventually (maybe once a week) manage a proper poo! This always involved a lot of screaming. We were given lactulose first, but this did not touch it. Eventually, we were referred to a consultant who put him on movicol. This worked like a miracle, high dose to start off with to clear him out, slowly reduced it and has remained on a sachet a day ever since. He now has regular bowel movements and only soils every now and again. (Just starting to potty train, but that is a whole other story!)

My son also had a bowel biopsy to rule out Hirschrungs Disease last summer, this was done under a GA at Adenbrookes Hosptial. Luckily, he does not have HD - just chronic constipation But, as you say, at least we know what we are dealing with and treating it correctly.

I hope another story helps. I def think you should go back to your GP and try and get a referral to a Paed Cons, so you can explain your son's medical history in detail. As a starting point for the constipation problems Movicol could be perscribed by your GP, it really does work well. Hope you manange to get something sorted for him.

glad you got sorted MB .

Forgot to add BITCAT,I know you want answers BUT to do a biopsy on your ds at 7 would be very painful (get you the results you want I know..) and may involved a GA as marchbunny said he ds had...

My ds never had any anesthetic but maybe due to him being so small and his age (5 weeks).
Let us know how you are doing x

thank you all..it has helped to know im not the only one who has and is going through this. So stressful when doctors etc wont listen to you..the consultant has said things that make me concerned he doesnt actually know what he going on about. As he has said that if ds had hirshsprungs we would know by now but ive heard of children being diagnosed in there teens. And he has also said that if he had a problem he would also have a problem going for a wee too..surely these are separate things.

If you ds had HD it wouldn't affect his ability to wee....

Im no medical person BUT my consultant for ds has always said it would be bowel only.

I was and still am a paranoid mother and have been reasurred on various levels that ds hd will only affect the bowel.

I would request an appointment with your consultant on monday and take it from there. I would also enquire about the possibiity of going further afield. Just mention the fact that RMCH and AH hospitals specialise in gastro issues and HD. x

hello all, my son is nearly 5. He had a pull through operation when he was 2 months. He is fit and health and happy. However, he continues to struggle to control his bowel control. Some days are better than others. Most days we have at least a couple of accidents. He is becoming more and more self conscious. Does anyone have any advise about training a child with hirschsprungs?

Hi BITCAT

Firstly you have every right to ask for a second opinion even if it's another gp.

My DD wasn't born with hurchsprungs but with an imperforate anus. Apparently geneticly its linked and has the same statistics 1/4000 live births. Also similar care as far as continence is concerned. My dd has movicol and microlax enemas. Bowel washes (clinical enemas) are also a good way to clear out the bowel and our stoma nurse has actually said in this day and age no child should have to go to school in nappies as there are so many things you can do to clear the bowel in the day. My dd's specialist is at great ormond street.

DDs cousin has hirchsprungs. He was quite a sick baby and it was not diagnosed until he was 2 1/2.. He had bowel repair and has been on medicine for all his life but DOES live a very normal life.. He is now 22. And able to control as and when he needs the medication. He was also seen at great ormond street.

Push your gp for a referral he should at least have things checked.

good luck

If it helps, I have a mild case. Only have megacolon.

As child/adult you learn to have fabulous bowel control but when you have to go you have to go. I think it is becuase of the lack of nerves you do not get the warning that your bowel is full as you would if you had a full bladder.