Anyone else with a child who refuses fluids??

[kizzyboo5]

My 21 month old son has Down's and totally refuses any fluids (no bottles of milk, beakers or anything pass his lips).

He is generally a good eater so manages to get 'sufficient' fluid in to him this way, but we're now waiting for an appointment with a psychologist Does anyone else have experience of this and if so, what has helped/ what route are you on?

On Wednesday he had a possible 'absent seizure' and was kept in the hospital overnight, but having just had a call from the hospital it appears that he has a nasty urine infection and his blood tests show that one of his renal function levels was elevated so maybe that would explain the 'episode'. He basically went really floppy and lifeless and was far more sleepy than normal.

Any advice greatly appreciated...

we had this with dd1 around the same age.

her longest time without fluid was just over 9 months -not a single drop past her lips!

Wil come back to this and post a little later (maybe tomorrow) - sorry, have guests and shouldn't be on here anyway!

My DD2 (2.11) had this at exactly the same age. It lasted 2 months for us and we spooned fruit juice in on a spoon with some fruit on, gave her watermelon and pears etc. Anything juicy.

What worked for us was placing a straw in her mouth for a second (without a drink on the end), then moved onto a carton of juice and squeezed a tiny bit in when the straw went in for that second, and on from there really. It took ages and we had set backs but got there eventually.

Now she refuses straws and beakers but will drink from an open cup (with someone holding the cup). It's not perfect but at least she has a drink when she wants one.

HTH

I've always struggled to get fluids down DS and it is a worry because dehydration is so dangerous. He tends to refuse drinks (and food) if there is a lot going on around him as he gets too distracted. He has his meals alone, in front of the TV - even Christmas dinner!!! Sad, but necessary as it concentrates his mind. I worry all the time that he isn't getting enough fluids down him at school

Thanks Ladies - kind of nice to know I'm not totally alone. I stopped breast feeding him at 15 months (had only gone on that long as I knew he wouldn't drink anything from anything else) and so it has been 6 months that he's not had a 'drink' as such. We get the occasional spoonful of hot chocolate into him, but by the second or third spoonful he's got wise!

Syringing the antibiotics into him this evening was as interesting as ever. He eats yoghurts, though, which I suppose is good and I sometimes manage to get puree fruit into him.

I think I need to just really go for it on those things now we're getting warmer weather.

I really like the idea of a straw with nothing at the end of it idea - thanks for that.
Will keep you posted with how we go.

Looking forward to hearing from you Silverfrog - also good to know I'm not alone in checking mumsnet when we have guests!!
Thanks again

My two year old ds also has down's syndrome and we had similar issues with drinking. I was bf up until ds was about 13 months and he would take the occasional bottle, but at around 4/5 months he totally refused all bottles and sippy cups too. I wasn't too bothered, but when I stopped bf we tried pretty much everything to try to get him to drink.

Our SALT was really helpful and gave us different cups to try, one of them was the honeybear cup.....it has a straw and you squeeze the bears tummy so your child gets the drink.

honeybear cup

It worked for us for a while, then ds refused the honeybear too! (Lots of friends though have had success with the honeybear cup.....just not us!!) We eventually found, through lots of trial and error that an open top cup works really well.....although ds still hardly drinks much (maybe a beaker full a day) and like you give extra yoghurts, fruit pots and soups to make up for the lack of fluid intake!

We also do lots of oral motor exercises with ds and they really help with the muscle development around his face and enabled him to form a better seal around the cup.......your SALT should be able to help you with this.

Good luck, I remember how fustrating it was when ds never drank!

Ds is 6, he has problems with eating and drinking. Havent had much success with strategies that work (although he seems to prefer to drink from a straw), so not much help to you on that front.

However, he has been referred to a specialist feeding clinic team, which is made of 2 sensory trained OT's, Dietitian, SALT and Neurologist . You could ask for a referral.

ds will only drink fizzy pop and through a straw...?sensory around lips...also limited diet still (was on 5 foods around your ds age was a nightmare...been ofn eating programme on and off for few years). His teet and weight is suffering though because of this

Will your ds have ice lollies?

I'm thinking of trying ice-lollies and think he might go for this actually as he's rather partial to a scoop of ice-cream!

Honeybear cup - now I couldn't for the life of me think of the name of it, so thanks so much for reminding me about that. I knew there was something on the market with a straw that could be squeezed...

We currently don't have a SALT (she left a couple of months ago, although she'd never been that much help) and as yet we haven't got a new one. I think the OT gave us some oral motor exercises on a sheet so will go and hunt that out...

The little tinker did seem keen to try some Coca Cola out of my can (absolute desperation after a sleepless night at the hospital!!), but even that got spat out. The biggest issue is keeping any fluid IN his mouth as he just spits it out or opens his mouth and lets it all run out.

We've been given some antibiotics from the hospital for the urine infection and even with a syringe I reckon he's only getting about half the amount he's supposed to have.

Think I'll go to local shop for some ice-lollies and might buy myself a nice White Magnum while I'm there .

Why not - hope you enjoyed your Magnum!

Would he tolerate jelly with his icecream or even separately? x

What a laugh! Got one of those rocket lolly things for him and DD. It went everywhere, but he at least liked the idea of holding the stick. Ideally I'd go for smaller lollies when I next do an on-line shop as the village shop doesn't have the greatest selection. The other option was those really long ice pops in a plastic case, but I knew neither of them would want to hold something so cold and I dread to think what colours and all that are in them

All he wanted was the chocolate from my Magnum!!!!! He is MY son after all

Nice afternoon in the sun if nothing else...
Will also try the jelly option, thank you for that suggestion. Think it might be a case of hands in the bowl and lots of mess so let's hope there's more sunny days ahead

Hi,

Can still only be brief, as guests still here. A couple of years agape I had a very similar thread - you could try searching for it (sorry, can't do links as am on my phone). I had lots of good advice then.

We had to do quite a few different things to g et dd1 through it. We gave her wet foods - everything in sauces. Eg spaghetti bol, curry, even soup with bread in it to make it easier for her to spoon up.

She wouldn't have ice lollies, but did eat yogurt and those fruit pots you can get for babies.

One thing we tried - not sure how successful, but dd1 enjoyed the game - was to give her q flannel dipped in water to suck.

Would your ds suck ice chips? When I was dehydration when pregnant both times, I was told that even the smallest amount of water rolled around the mouth can be absorbed.

We also made a huge game out of stringing water into her - would take nearly an hour a day to get 100 mls into her, but anything helps I suppose! Again, lots came back out, outcome must have gone down!

Thanks Silverfrog

I love the flannel idea - the bath water is about the only thing he seems interested in so I reckon he might actually go for that idea. Obviously I'll use clean water!!

I'll keep you all posted with how we get on. This hospital scare on Wednesday has made me determined to address this issue rather than kind of assume/ hope he's getting enough fluid.

xx