Been told to starve my child - I give up

[SprinkleCakeLollipop]

I had a phone appt with our local wellbeing team today with regards to my childs very restricted eating.

Their advice was to let him go hungry.

I give up. I am the only person my child trusts to take his difficulties seriously, how can I starve him????
Am I supposed to wait until he passes out through hunger??!! I've been told to inform school what I'm doing so they don't report me to social services!

[CaptainKirkssparetupee]

What terrible advice.

[Ellie56]

Have you tried your GP?

[SprinkleCakeLollipop]

Yes Ellie it was my GP who refferred us. I was also told a child won't starve themselves.

We know spd plays a part but there is more too it. He will only eat certain foods in certain places, sometimes refuses food altogether if we are somewhere unfamiliar, he won't even eat his safe foods sometimes if we are in a different place which means he goes without anything if we are visiting family/on holiday etc. But I'm sure he'll eat when he learns

[Growingboys]

I was told a child wouldn't starve itself but my DD got so thin, she nearly had to have a naso-gastric tube put in at GOS.

Don't listen to them. You know what your child needs.

I speak from experience. Keep going til you find a doctor who understands. A child WILL starve themselves. Good luck xxx

[Frusso]

Wellbeing team?

[Fairylea]

Terrible advice.

I have a son with asd who will only eat about 5 foods. The dietician told us to just let him eat whatever and whenever he likes. The most important thing is to build a positive relationship with food. I would actually write and complain about the advice you’ve been given.

[Frusso]

Does the well-being team include a dietitian?
As for informing the School, I'd think they'd report you for following that crap advice.
I'd advice going back to gp and getting referred to a proper paediatric dietitian.

[SprinkleCakeLollipop]

Yes a wellbeing team. They act as the access to our integrated delivery team which hosts a whole range of services. So you get referred, assessed via phone and then go from there.

The GP felt a dietitian wouldn't be much help as there appears to be underlying psychological issues? Willing to try anything though!

[Nettleskeins]

There's a blog called Faithmummy: she has written a post recently about exactly this issue - child with HFA refusing certain foods and she seemed to have found a certain solution if you read - many years of unhelpful appointments later..(sorry cannot do links)

[Nettleskeins]

anxiety will stop children feeling hungry. Cortisol overrides appetite.
mealtimes at table and with other people may increase anxiety. watching in front of the telly whilst you eat, and starting to eat things which are easy snacky foods may reduce anxiety, then you can progress to eating more nutritious foods in places of child's choosing (ie safe places - under table, in wendy house, in bed, on sofa) Once eating normal food is established you can then progress to normal mealtimes.
Certainly this has what has happened with my sensory defensive daughter (who is now 15) eats very well, but still quite fussy in some ways, and used to be traumatised by family meal times and being given plates of food.

[Nettleskeins]

when I saw a dietician for sensory defensive reactions (in ASD toddler, undiagnosed) refusing to chew or crunch, she recommended melt in the mouth foods, like quavers and meringues to get him used to textures. Then we progressed to traffic lights (red amber green peppers) then muscles from brussels (flexing muscles whilst offering green veg ie brussel sprouts) trees - brocolli. Sauce always avoided, except ketchup. foods kept separate no mixing of ingredients.
He eats everything now and is a very healthy fit 16 year old boy. Who cooks for himself.

[Nettleskeins]

it really is ridiculous advice though. What about anorexia? Haven't they heard of that?????

[Nettleskeins]

there is a balance though. I think forcing your child to eat because you worry about them starving can exacerbate issues. Better to let them snack on "bad" foods, and work on reducing anxiety around food first.

[SprinkleCakeLollipop]

Thank you nettle I'll look her up.

Atm he eats what he wants, where he wants, when he wants. I don't feel I can do anymore to reduce his anxiety? As he's got older he's got more and more restrictive and eats less. Today he's had one wrap, a brownie and 2 yorkshire puds (he also had chicken burgers but refused them). He'll probably eat some grapes later. That's a fairly typical day atm.

[HardAsSnails]

I think a dietician would be extremely useful (it was for ds) as at the very least they can analyse his diet and work out if there are any deficiencies and devise a plan to address them, eg prescribed supplements.

[hazeyjane]

I agree that a referral to a dietician would be useful. (the hospital service as opposed to the 'here are some healthy eating leaflets....do you sit and eat as a family?' service)

Ds has a very restricted diet, alongside gastrointestinal issues, his dietician monitors his weight and growth, works out where nutrients are lacking in his diet - suggests tweaks where appropriate, and supplements/fortified products, when the tweaks don't work, she has made some suggestions around food and eating that have been helpful for us and has input with school. I also find it very helpful to have a professional who makes me feel less anxious about the crappiness of ds's diet (after all anxiety needs to be reduced all round, which is hard when you can see your child losing weight, lunchboxes coming back full and barely sitting down to eat for more than 2 seconds)

[Jackyjill6]

How old is your child OP? This is very poor advice. I have never heard of a Wellbeing service so can't comment.

[SprinkleCakeLollipop]

He's 11.

[NewYearSunshine]

My friends son almost ended up in hospital being tube fed, a child with ASD can starve themselves!!!
You have had terrible advice!!!!

[Lawdoc]

'. I was also told a child won't starve themselves.'


That's bull. I watched a documentary on a little girl who wouldn't eat anything but yoghurt. They took yoghurt away and said exactly that. She starved herself till they put the feeding tube back in.

[Checklist]

Great Ormond St certainly used to run a food desensitisation clinic, for children with a restricted diet - for example due to ASD and sensory processing issues, often to do with textures rather than the foods themselves? I suggest you try to find out if they still run it, and ask for a referral to them, if it does!

ITA with Pp, that it is better for DC to eat something to keep his weight up, rather than "let him starve", even if his diet is not "healthy". DD has a history of struggling with her weight for a variety of reasons, and first the dietician told her to forget about healthy eating - she was to drink Jersey milk, cakes, biscuits, full fat everything, grated cheese on dinners, etc! Now, digestive problems for a different reason and the consultant told her to follow a low fibre diet - white everything, no skins on fruit, no pulses... Cornflakes or croissants for breakfast!

[Checklist]

(I can't say DD would have starved herself to death, but twice her BMI has got really low - faced with constant loss of appetite, nausea and vomiting, she suffered drastic weight loss and I saw no sign of it stopping)

[Shedmicehugh]

Agree stupid advice! I was given similar by a paed ‘if he lived in Africa, he would have to eat rice’ take it with a pinch of salt and practice your eye rolling skills!!

Ds has been severely anaemic, b12 and vit D deficiency too. Might be worth getting a blood test. Is your ds underweight?

We saw a dietitian, she was good at analysising ds’s diet and providing a tub of powder (can’t remember what it’s called now) to replace vits etc. Only problem is ds won’t drink it! We have a b12 spray and over the counter chewy vits.

We have also tried various OT’s including specialist feeding clinic at Evelina hospital. And a CAMHS pilot food group. No success.

I’ve given up! I’ve found any kind of pressure around food, makes it worse!

I think for my ds his extremely restrictive diet is definitely sensory. Also very anxiety driven, when anxious, it heightens any sensory difficulties and food doesn’t taste or feel the same. Also very much about control and routine and not liking changes. When ds gets extremely anxious (usually school related) he restrictis his already restricted diet to literally nothing.

Ds ‘regular’ diet is bread, Rice Krispies (without milk) salt and vinegar crisps, chips, certain salad and bacon. Also very specific cakes or sweets. He isn’t underweight, there are lots of carbs. Just lacking in vits etc. He has the same thing for breakfast, lunch, dinner every single day!

Things that have helped him to at least try a new food-

Reducing demands or expectations

Trying to expand with food that is very similar to the ‘beige’ food he does eat

Trying a new food in a different place. For example my ds will only eat certain food at home and certain food in school. The 2 cannot cross! Go to a restaurant and he has tried a couple of new foods! Which I can then use at home!

I take ds shopping, give him a basket and tell him to put in any new food he likes the look of.

I have also explained what food is healthy and why etc

[youarenotkiddingme]

Another at arf at not eating

They seriously don't have a clue

My ds doesn't have a very restricted diet but he would rather starve than eat something he cannot manage.

This morning he refused point blank to eat anything for breakfast.

Why? Because his chocolate weetabix minis had run out.
I had normal weetabix chocolate - which apparently don't taste the same. I had toast and chocolate spread which he will eat - but he doesn't have that for breakfast.

It isn't just about food and textures. The restrictive and repetitive behaviours of asd can play a huge part around here.