Desperate Please Help ~ 4 Year old autistic daughter wont eat?

disneyprincess said:

Hi,

She seems extreemly tired, she was full of energy before when she ate the yogurts but now she looks very pale and is losing weight. She starts school in 2 weeks at an autistic resource base school but I'm worried she wont have the energy.

I have booked an appointment to see the GP on Monday to discuss any suppliments such as meal replacement drink that we could possibly give her but these would need to be mixed in with her orange squash so they couldnt be milkshake based and I dont know if supplement drinks exist which are fruit juice/squash based??

My health visitor is out of her depth and says they cant help and our local dietician says their refferal list is closed due to too many cases.

I have got a paediatrician appointment on the 5th October but this is quite a time away yet.

Thanks for reading this,

Please help, I dont know what to do......? 

hey there

is she able to communcate well? do you understand her well?

if so then why not ask her what she wants, what kind of textures, tastes, colours etc she likes, and try to find a compromise on what she will eat and drink that way

i know shes only 4 but if she has autism then her 'senses' are stronger than ours in general and it means she will probbaly feel/smell/see a lot stronger even at such a young age and obviously if you dont like the taste/texture or even colour you wont eat it and will eat the same kinds of things that are similar to it (and that goes for us adults and non autistics too)

you dont need a pedeatrition, health visitor, gp or dietitian, you need a specialist in autism and children, have you asked your gp about a referal to an autistic specialist?

make it clear that your 4 your old autistic child's health is the gp's responsbility as much as it is your own and if they dont refer you to someone who can help then it's up to them to do it, and then ask them how much they know about autism

but i admit im a wee bit biased with gp's, i think they are pretty useless so maybe don't have the same attitude i just gave here hahahha, (unless its necesary   )

I would ask for a referral to a dietician specialising in children - if your GP can't do it, can s/he refer you to a paediatrician who can?  That's how we got our referral...  You might also try finding a likely one yourself at a local hospital and just telling the GP you want a referral to that specific person.  That way you're not reliant on them knowing what to do!  We have had a paediatrician for a couple of years now, and truth be told we probably don't need her input any more, but she's the gateway to lots of other services, so we've agreed she'll see our son twice a year.  And she's one of these wonderful, wonderful doctors who realises that she's actually treating the whole family!

3 things I did forget [rolls eyes] - one was getting an ice cube tray and putting tiny bits of food into each bit of it (I put really odd mixtures like cheese, cream cheese, raisins, a solitary grape, raw carrot, a piece of apple, piece of cooked pasta, etc!). It was rather fun for him, though a pain for me, but it did broaden his tastes a bit!

We also had some success getting a little toy till and some toy groceries as well, and by getting him involved in shopping for food.  He actually writes a shopping list and follows it now, so he's much more interested in different foods.

And I also forgot to say earlier that I'm ashamed that I refused to "play along" by making mealtimes creative and fun, wanting my son to conform to "normality".  Suffice it to say that wasn't a good call...

Good luck!  If I remember anything else, I'll get in touch!

Hi, Thanks for such a great reply.

When they changed their packaging I went around every shop buying all the old pots up, Ive got a bag full of them in the cupboard and was spooning the yogurt into the old pots. She never saw me do this but has stopped eating them altogether. I am questioning whether they have changed the flavour slightly of the yogurt unless she has overheard me discussing with people what I am doing?

I contacted Petits Filous but they havent responded to my email, I expect they thought I was a crazy women!!

We definately need to see a specialist, we last saw the dietician in February 2011, she seemed happy that my daughter was only eating yogurts and biscuits, no further appointments were made. However today my daughter has only eaten about 5 rich tea biscuits and now she is even refusing to eat ones which are not ASDA brand...

I rang the GP This afternoon as she has developed ezcema on her face and has cracked lips which seems like her immune system is weakening due to 3 weeks of just biscuits?? He told me that is is not their expertise to treat anything this complex and I need to see a dietician which I know but I need to be referred. 

I did get her to peel a banana with me and lick it which was a start this afternoon, we are going to try more playing with food this weekend.

You have had such a fantastic result with your son and have given me some great ideas to try, especially the treat bag and picnic.

Thanks so much for your help 

Might be worth trying to find a corner shop or similar that has some old stock of Petit Filous in the old packaging then spooning the new stuff in before giving it to her?  If you spoke to the company they might be able to give you some of the old artwork to modify a new pot...

Longer term, we had a nightmare with our son's diet - not that he wouldn't eat things but that he just WOULDN'T feed himself anything at all (at the age of 3+).  In the end, we got help from a specialist nurse attached to a clinic at Leeds General Informary that supported children with eating problems of all kinds.  She was brilliant!  One thing she suggested that worked fantastically for us was starting with something he really liked and then gradually moving outwards in a spiral to get to unfamiliar foods.  For example, after accepting it on a spoon, he eventually agreed to pick up and eat a fragment of chocolate button, then half a button, then a whole button, then a chocolate star, then half a piece of chocolate, then chocolate cake, then a small chocolate biscuit, etc, etc.  It was slow and frustrating for the first 6-8 weeks and then it was like the damn opened and he was off!

2 other things you might like to try: Firstly, grade some common food from 1-10, where 1 is something she'd never touch and 10 is something she'd definitely eat.  Sometime that *isn't* a mealtime (so there's less pressure all round), offer her a food that you've rated as a "9", and if she tries it, she immediately gets a "10" food as a reward (and make the deal clear). 

Secondly, a "treat bag" wth different treats that aren't normally available to her (watching a favourite DVD, playing a game, going for a swim, etc) and she gets to pick one out for trying (NOT necessarily eating) a new food.

I would add that for us, we are able to insist that our son tries a food (he is very intelligent and open to negotiation).  Not that he eats more than a tiny bit, but that he gives it a go.  He gets lavish praise when he does, and he has gradually accepted that we won't push it too far in one go - we are really still spiralling outwards from the foods he does like.  He will also eat more if we have a "picnic", which can be on the floor in the living room but he still loves, and if we eat the same food together.

Good luck - food is SUCH an emotive issue!

Hi, Thanks for your reply. Yes she just eats the same things wherever she is. My mum has tried lots with her including cooking and giving her things like ice-cream in a cone or chopped up fruit and she did run round the house licking it and saying yum yum, but not actually eating it, which is a start! She is so particular when it comes to packaging, she has to see where the food has come from before she will eat it.

Its definatly a good idea for me to get her health checked, she had bloods taken in Feb 2011 and everything came back fine, although she was eating her yogurts then, but trying to get bloods from her was a nightmare...

I have been doing some research tonight on fruit supplement drinks and have come across one called Resource Fruit Drink in Orange which looks like its the sort of thing that could help so I will mention it to the GP on monday as its prescription only.

I might give nas a call tomorrow as they might be able to give me some more advice.

Thanks for your help 

hi - does your daughter eat only these things regardless of where she is, such as home, school, other people's houses?  I ask because my son, who's always had a good appetite, had certain foods, especially dinners, that he'd eat at home. Later I found out he'd eat other things at school or in someone else's place.  Eventually it all joined up, eating-wise.  It's a good idea to get her general health checked out with your gp, just to be on the safe side.  If she's tired she needs to checked out for anaemia, if she's not getting enough vitB.  I think there may be some fruit-flavoured supplement drinks so it's definitely worth mentioning to see if you can give them a try.  I don't know if there's any advice on the nas site about the difficulties you're having but it would be worth checking, or even ringing nas up.  Good luck.