Dietician - what to expect? & High calorie supplements?

[BadPoet]

This is the first time I've posted here, hi .

I have a nearly 7yo dd with AS, typically she is v fussy about food and has various sensory issues as well leading to a fairly restricted diet. After a major battle with CAMHS (let's not go there) we've finally got a referral to a dietician for her.

I know what I want from this, I'd like them to prescribe something that a)dd will actually eat and b)gives her a decent number of calories so that we can continue with what we're doing already - gradually expanding her repertoire, getting her involved in food prep more, trying out new recipes she might like, presenting food differently etc etc. What I DON'T want is to be lectured on basic nutrition, we do already know quite a bit about food and how to get children with ASD to eat it. We just want to be able to do that without the stress of seeing dd get any thinner - she's always been a string bean but there's string bean wiry & healthy and string bean like she is now, which isn't good.

I know I'm being very negative, we haven't had a great time with HCPs so far. Is there any chance they'll just prescribe us a milkshake supplement or something and leave us alone? Or will there be food diaries and charts and workshops and stuff?

Thanks!

ds has CP and has always been ridiculously fussy and underweight.
our dieticians have all been great to be honest, never had any lectures and they advised things like rolo puddings and chips!

we also tried a lot of the milkshake and juice supplements but to be honest most of them sound nice but leave a horrible taste in your mouth...i tried them all before i gave them to ds!

ds now has a gastrostomy button and gets all his nutrition and calories thru that and dietician has said he can eat whatever he likes (which at the moment is curry, roast potatoes or chips) to keep up his eating/swallowing skills as shes happy he gets everything he needs thru the button so anything else he does eat is a bonus so everybodys happy!

Oh good luck i have never bothered with dieticans for my ds who has bad food issues just accepted what he will/wont eat he is 26lb's at nearly 6 not great weight but he does have growth hormone defiency as well and health wise is very rarely ill so im not to concerned atm about his food issues and we go with the flow..

With my dd have swallow/eating problem and being fed via a tube mainly i have gotten to meet few parents who's older children have added supplements and have noticed they are mainily on milkshake type drinks called fortisip i will warn you tho they are disgusting tasting things lol..maybe your dietician will issue you with them although i suspect she will want food diarys etc of you to so maybe keep food diary from now up untill you go to see her might help skip a step iykwim? xx

My dd was really underweight before she had gastrostomy but like glittery I found our dietician really good, no lectures just v helpful. Apart from supplements the child can drink (some come in little cartons and look like ordinary drinks) you can also get stuff you sprinkle on normal food to add calories etc, this might help you. Also I have to admit for years my dd existed on chocolate nesquik which was much more palatable than the shakes from the dietician.

Hi badpoet

You have my sympathies cos I have been there and got the t-shirt on this matter.

There are dieticians and then there are dieticians. The NHS one was a waste of space and did nothing. Sorry but forewarned is forearmed. You may be luckier than we were in this regard.

I was very fortunate in that we actually found someone good in London on a private basis (took around one and a half hours to travel there each way but it did help and we saw her for just under a year). She is a paediatric dietician and we did a reward chart, games with DS, diary etc.

This lady also spoke to us all together and separately (food phobia does ripple out to affect the whole family unit and I found talking helped as well, you do need to talk to someone who will not say such toss as, "well I'd make him/her eat" and "they'll eat when they're hungry").

She did therefore help and DS has expanded his food groups a bit (he now eats some hot food). We were prescribed paediasure for daily use (he only liked the banana one though so I used to ask for that one on the form).

It has taken a long time and his eating is still very much a work in progress.