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Can anyone help me? SEN DS not eating.

(8 Posts)
FrecklesFreckles Wed 14-Aug-19 07:59:50

So my DS is nearly 3 and is suspected to have autism but we are just waiting on the diagnosis.
I've always had trouble with his eating. He's never eaten a proper meal and so far has survived on Cow & Gate baby jars, the larger 10 months old ones.
He would also eat dry cream crackers, a slice of toast and packets of Pom Bears so I know that he physically can chew and eat, but maybe it's more of a sensory/texture thing.
But for the last two weeks his eating has gotten a lot worse. He will not eat anything that he has to chew or any baby jars that have lumps in them. So all he's been eating these last two weeks are yogurts and jars of Cow & Gate puddings.
I can't weigh him to check his weight as he won't go on a scale or stay still for me to weigh him while holding him.
Our GPs have been no use and have essentially said his problem is that modern day parenting focuses too much on being their friend rather than parent. hmm

I guess I'm just concerned about how long he can go on eating like this for? I'm worried about his health and weight but also it's very tiring for me as it means he is hungry quite frequently due to never being full up so always wants to eat every 2 hours or so.
He also doesn't feed himself, I have to feed him still. He will sometimes drink milk but he only drinks from a bottle still despite how hard we've tried to move onto a sippy cup and I don't want to damage his teeth by constantly drinking milk from a bottle.

I know I'm probably just working myself up and over worrying now, but the whole situation is starting to stress me out.

Does anyone have any experience of this with SEN children and any advice on how to approach eating?

We have very little help or support from any services so I'm starting to feel stuck for somewhere to turn to.
Any advice appreciated!

OP’s posts: |
FrecklesFreckles Wed 14-Aug-19 08:42:06

Anyone?

OP’s posts: |
jollyohh Wed 14-Aug-19 08:43:49

I'm not surprised you are stressed out!

I'm really sorry you've not had much support. Have you spoken to the team assessing him for ASD for strategies and support?

I would by pass the GP if they are not helpful and go via the Health visitor and try to get him weighed at the clinic and discuss these issues further. As the very least they can refer you to the special needs children dietician and hospitals usually have community based teams that help with ASD and feeding but probably depends where you are.

Will he take vitamins? Sounds like his diet is pretty limited so I would want to discuss vitamin d at the very least.

Also ask the HV to refer him to the SEN dentist. Then change GP's.

FrecklesFreckles Wed 14-Aug-19 11:40:38

I have spoken to HVs in the past and they just say to strip it back to the basics of weaning and start again. I've tried this but DS won't entertain it at all and will go days without eating or drinking.

He won't take vitamins as even the ones that say they have no taste do have a taste to them so he won't drink it, or if they are a different colour he sees it and won't drink it. So I am concerned about vitamin deficiency.

Also the HVs have said there isn't anyone they can refer us to regarding his eating. I might try phoning again.

I don't know what to do with him. I'm so concerned about his health all the time and then there's the rest of the autism day to day battle on top of it.

As we are still waiting assessment the team don't provide any help. All other professionals that have seen him have said they would be very surprised if he isn't diagnosed with autism as it's clear, but its just a waiting game to get the assessment.

Thanks for your reply anyway. I think I will try to ring the HV again.

OP’s posts: |
jollyohh Wed 14-Aug-19 13:55:05

Services have been cut so there may be no SEN community dietician but I would be surprised. If you google 'children's nutrition and dietetics' plus your local hospital trust it may come up.

It's really common to have issues eating with ASD and obviously nutrition is important for growth. Has the GP don't me bloods checking his vit D and iron? Do they know his in the process of diagnosis?

Don't call the HV, go to the clinic and explain face to face. Get them to right in the red book the plan they propose and ask for a review date. How has his weight gain been?

Greentulip Wed 14-Aug-19 15:47:43

Does he suffer from tonsil problems? My son’s eating is also limited and we have to rotate the same items over and over and when he drops one, it’s really stressful as it’s getting fewer and fewer. I feel for both of you.

triballeader Thu 15-Aug-19 09:54:36

My youngest son has ASD & ADHD plus multiple allergies. He was and still is a world class pain to feed.
He too lived on a diet of crackers, dry toast and plain pombears. he only ever had one meal a day- lots and lots of snacks on the go.

From a sensoary point of view what my son was looking for was a bland taste and crunchy texture. The allergies [epi-pen] meant we had access to a dietician very fast. It is worth pushing for a referral as they can often help problem solve SEN meets food phobias or sensorary issues.

It might help to keep a food diary for over a week just to get an idea of what he will try and when. Mine would only ever consider eating a new food if it passed the sound, smell, taste and texture test. This is something is SaLT and Dietician came up with to try and encourage him to try new foods. In honesty he went into food refussal after some nasty allergic reactions so i could see his point.

It had to sound like it was crunchy [like raw broccali, raw carrots and granny smith green apples- still the only fruit and veg the boy eats] he had to smell them to check they were 'bland' and not spiced or herbed. He had to rub it on his lips to get a sense of the taste. Only then might he put it in his mouth to check it really went crunch for him. Most foods that made it to his mouth would be spat out for not being crunchy enough.
The boy has survived for many years on the same increadibly boring diet. The dietician checked what he was eating and said whilst it would drive the rest of us mad from boredom he was managing to eat a balanced diet.

He still lives on some chicken breast meat, crunchy fishfingers, raw broccalli, carrots and green apples, plain toast, plain Seabrooks crisps, occasional baked beans but insists the sauce is washed off, plain pasta, chips, boiled rice. On some very rare occasions I can now sneak mixed finely chopped veggie bolognase in as long as its not touching the pasta. That has taken me years to be able to get away with though.

ElyElyOy Thu 15-Aug-19 11:37:49

Will your son have the squeeze pouches? I can sneak abidec in to a pouch of mango purée: it’s only 0.6ml and if you syringe it in (when they aren’t there), put the lid on, and squidge it about to disperse it you can’t see/taste it.

My son (ASD) has a limited diet, but his consultant wasn’t too concerned as long as he ate more than 5 things and had a vitamin. I find he goes through stages of increasing/decreasing what he eats. I have also found that he seems to eat foods with a very strong flavour so maybe try a few different tastes and textures etc.

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