Worried about grandson

[SusieOwl4]

My grandson has had severe constipation since he was a baby and has been on picosuphate and movicol for about 3 years . He has no diagnosis . He has been impacted in the past and even on high dosage of the drugs his lower bowel is not clearing . He has never had any food intolerance test or ultrasound , but the hospital are doing an MRI scan for a tethered spinal cord although they do not expect to find anything. There has been talk of hyersprengers ? Sorry don’t know how to spell it .now there is a plan to have to manually evacuate him every day and even perhaps a colostomy bag . Anyone else been through this ? I am thinking of helping them go private as all this seems very drastic without a diagnosis. It is affecting his development and now his baby brother seems to have the same problems . Any comments would be appreciated.

[ricecakeseverywhere]

I would definitely pay to go private if you can afford it easily but another option would be to get referral to a specialist centre - one of the teaching hospitals with a specialism in this area of paediatrics?

[ricecakeseverywhere]

So sorry this is happening

[SusieOwl4]

I did find a hospital in Harrow that do specialise in bowel problems . So I might try and contact them .

[flutterby77]

My brother had hirschbrungs as a child and went through misery similar to what you describe until he was diagnosed at 5 and had surgery to correct it. From memory (and this was a long time ago!) they did biopsies of the bowel to diagnose him. Hirschbrungs is where a section of the bowel has no muscle to push the stool through. Are they doing more tests?

[SusieOwl4]

No . If the mri scan is negative nothing else planned .

[SusieOwl4]

Do you know how they found the right part of the bowel to do the biopsy ? They don’t seem to want to do that .

I think generally there is a right to be referred to a specialist hospital but I don’t know how you go about doing that .

[MrsJayy]

The mri will eliminate i would wait till then and then see but do get him seen privately your grandsons parents can ask for a private referal after they get Mri results

[MrsJayy]

Relative of mine has hersburgs syndrome he was diagnosed as a baby though.

[SusieOwl4]

They are not looking for that on the MRI. Only the possibility of a tethered spinal cord .

[twistorstick]

What hospital is he under?

[MrsJayy]

Sorry totally mis read you I think i would still wait if he has tethered chord then it does have an affect of the bowel so he will need better bowel management. I have a neurutube defect with possible tethered chord my bowels are iffy at best

[Ttbb]

Definitely go private for diagnosis (and treatment if possible). The NHS is hopelessly underfunded and most staff under the age of forty don't know how doctors should behave (obviously not their fault, they were trained in very poor conditions).

[MrsJayy]

Urm you do know that Uk trained Drs were trained through the NHS don't you Ttbb

[flutterby77]

i think they did some kind of barium meal where he swallowed small markers and scanned to detect where the issues were, this was some time ago though. It's usual for hirschbrungs to be picked up at birth these days but some do slip through the net.

[LadyGagarden]

My friend’s son has Hirschsprung’s disease. He is 7 now but it was diagnosed when he was a baby and was linked to another diagnosis. Part of his bowel was removed and he has been on Movicol too. This year he underwent something called an ACE procedure. I’m not 100% sure of the exact way this works but I think it isn’t quite as ‘bad’ as a colostomy bag as he still gets to sit on the toilet and get the sensation of pooing but he has to have a flush once a day to do it. Hope your grandson is ok.

[SheepyFun]

I was born with Hirschprung's Disease, though a more severe form than your grandson has - I couldn't pass stools at all, and refused to feed. I first had surgery at 10 days old.

I had a barium meal to find out where the problem was (this was before mri's were possible - almost 40 years ago), then a biopsy was taken from the site which appeared unusual from the barium meal.

I had three rounds of surgery to correct things - with a colostomy until I was 6 months old. If this is what your grandson has, it's likely he'd only need one operation; bear in mind I was a tiny baby who'd had no nutrition for 10 days; the first surgery was kept as short as possible to ensure my survival.

Ironically, now my problem is diarrhoea - I always know where the toilet is. There are some jobs I couldn't do (ones which restrict access to the toilet). But I lead an otherwise normal life.

Hope that's slightly reassuring.

[twistorstick]

Ideally you are under a good children’s hospital, if not ask for a referral to your nearest children’s hospital or hospital with a strong/leading children’s department.

[SusieOwl4]

Thank you all for your replies . He has never had a barium . And no real diagnosis at all . He has never done a proper poo ever just watery dirrorhea round the blocked lower bowel . It’s interesting it could be diagnosed that way . I wonder why they talk about things but then don’t test for it .

[SheepyFun]

I would urge your family to push harder for diagnosis and treatment. After I was put back together at 6 months old, I was able to go to the toilet normally. I have full sensation and full control - I was able to use the toilet completely normally and independently, certainly by the time I was at school. It sounds as though your grandson's quality of life is somewhat lower than that, yet I was sicker to start with - it's not a competition, just pointing out that if he has hirschprung's, his life could be much better.

[SusieOwl4]

Any diagnosis would be good to be honest . He has been on laxatives so long and they don’t seem to help at all . I would do a bit more investigation about how to be referred to a specialist hospital.