Anyone with Gastrointestinal dismotility disorder

[Katrina_1511]

Hi, I have a 7 year old son, who has quite a few problems, he has dismotility in his stomach, small bowl, large bowel, and most recently this may have moved into bladder.

He has a peg into which he has feeds overnight and during day. He can eat small amounts of yoghurt and soft stuff sometimes, due to the contents taking a very long time to empty (delayed gastric emptying), he can feel sick most of the time which he has meficine for.

He also has an ACE in large bowel and has nightly washouts due to the dismotility problems in bowel. He is incontinent both bowel and now urine (still being investigated).

He has a central line in place, currently not being used at the moment , but gets used when he has bigger episodes when his stomach and bowel go to sleep completely, he gets TPN in hospital for this.

He has had prolonged hospital stays and his team have been in contact with g.o.s.h. For his condition.

There are other issues aswell which go along with this as can get quite complicated.

What I'm wondering is it there is anyone else out there that suffers from this problem or simliar, or has a child with this as no one can seem to find me anyone with this. I feel very alone in dealing with all this.

My partner and mum are great in helping me with him, not so much my mum now as my dad has recently been diagnosed with MND.

Thanks katrina

[NanaNana]

Hello Katrina,
Although I have no experience whatsoever of your son's condition, I want to say that you are welcome and want you to feel free to post whenever you want, about anything you want. Someone will 'talk' to you, we're all carers (or used to be carers) and may not understand anything about specific disabilities (my late hubby had syringo-myelia for instance), but we do understand about how people are feeling.
Take care x

[bowlingbun]

Hello Katrina, welcome to the forum. As your son has complex needs, has anyone mentioned "NHS Continuing Healthcare" to you. It's very much a postcode lottery I'm afraid, but worth investigating. Your GP or consultant should be able to arrange for a checklist assessment.

[Melly1]

Hi Katrina,
I don't have personal experience of caring for someone at home with this condition, however, we do have children at the special school where I work who are peg fed and also given meds to aid motility, digestion and control reflux.

We have one little girl who is fed blended "real" food i.e. food especially cooked and blended by her parents instead of formula. This is very unusual, but it really works for her.

Contact a family are usually good at recognising rare conditions, providing info and putting families in touch with each other. However, I could not find your son's condition. Might still be worth giving them a call, it might be listed under a different name and if not they can up date their database and other parents might be directed to contact you! http://www.cafamily.org.uk

Melly1

[Melly1]

Hi Katrina,
Me again I knew Carers Uk had info on peg feeds but couldn't find it when I wrote my reply, just stumbled on it by accident
https://www.carersuk.org/help-and-advic ... your-child

Melly1