Hypermobility and hypotonia....and reflux - anyone have experience?

[13lucky]

Hi there, my dd who is 6 has hypotonia and fairly severe hypermobility (scores 9/9 on the Beighton scale). She copes fairly well with it but does get aches and pains on a daily basis and has been on daily Movicol since she was a baby for bowel issues. We don't get any medical 'help' other than a routine 'check up' with a paediatrician every 6 months or so who is purely interested in her poo-ing issues and nothing else!! He says that the aches and pains are part and parcel and nothing much can be done apart from BEAM if the school will do it with her (which they are at the moment) and trying to get her to do exercises at home (which is pretty impossible with a 6 year old who is exhausted because of her conditions after school)..and painkillers.
She is now really in pain after each time she eats. She describes it as a pain in her neck and it comes on in the middle of eating anything. There are no foods that seem to make it worse...it just happens with everything. I suspect she has had this condition for a long time but it is only recently that she has managed to describe it to us (previously she has always complained of tummy ache and that happens very regularly). So today we went to the GP and he has prescribed Infant Gaviscon twice daily for a month thinking it is reflux. The pharmacist was very surprised he had prescribed 'Infant' Gaviscon as this is for babies...and we're having a trauma getting it into her as it tastes disgusting. I'm sorry this is so long - just wondered if anyone had any experience or advice? Thank you.

Offer a sweet for afterwards. Infant gaviscon IS rank. I know it's bribery, but it's necessary to help them!

My DS2 also has severe Hypermobility (9/9 too), hypotonia and bowel issues, he is on daily Movicol too.

He had reflux when he was younger, it cleared when he was around 8yo (he's 9 now). He still can't manage anything remotely spicy or too acidic though, without it recurring.

Do try to look at the foods too, tomato-ey, acidic and spicy foods are all big culprits.

DS2 eats what I call a 'beige' diet...

Thank you ChoccyEggs...I have tried looking at what she eats - but it seems to happen whatever she eats. I am pleased it has cleared for your ds.

I agree about the beige diet.
If you look at the IBS diet, or non irritating diet, it takes out most of the taste out of food
When things get a bit much, I detox on plain rice and water. Soothes the stomach for a while.
The reason that there is an obsession with poo is that realistically that's where they feel that they can do something. Dish out moviolas, dulcolax lax etc and their job is done for the next 6 months. Box ticked.
Age helps, DS1 still has the pain, but the poo issues are more manageable and he can eat whatever he likes within his food intolerances.