To ask about sons refusal to eat anything

[Picklypickles]

My son has just turned 9, he has been diagnosed with Autism and ADHD over the last couple of years. For the past year he has been taking Equasym for his ADHD, which has helped him massively at school and he has really come on in leaps and bounds since he started taking it. He has had the dosage increased twice after it stopped being so effective after a few months, firstly from 10 to 20mg and then later to 30mg.

At his last medication review his specialist nurse noted that he had lost 7lbs, and asked if he'd been having any issues with appetite. At that time I had not noticed any significant changes to his eating habits at home, he's never been a big eater. In recent weeks however I have noticed a significant decrease in his appetite, culminating in this past week where he's been off school and he has barely eaten a morsel. I have thrown out the majority or ALL of his meals this week after his complete refusal to eat. I have made all of his favourite meals, things he'd never normally turn down and he's eaten none of it. His bolognaise pasta bake was "different" and "darker than usual", it was the exact same receipe I always follow and all the exact same ingredients - nothing different at all. His usual Tesco ham and pineapple pizza was suddenly "sticking to his mouth" and a whole bunch of excuses along the same lines. The only thing he's eaten all of without complaining this week was a viennese whirl!

He has also developed some odd and concerning new habits such as holding food in his mouth for a long time and that has developed over the last couple of days into then excusing himself to the toilet where he is spitting it out. He has also taken to reading the ingredients on food packaging and suspiciously asking "what is x, what is y?" etc.

He is starting to look very noticeably bony and I'm pulling my hair out with worry, I will be phoning his nurse specialist tomorrow morning of course but I was wondering if anybody else has been through anything similar?

I've not given him his medication today to see if that might make any difference, however its now 3pm and he's not touched a morsel all day.

In my area of work we are seeing a number of young autistic people with eating issues. Either not eating at all or having issues with textures and taste and ending up with low BMIs.

I would suggest getting him to engage with cooking and change the focus from ingredients to him deciding what he wants to eat. use visual aides for him to think what it may look like. It would also be helpful for him to have a sensory assessment and that should help as you dont want this to become a serious issue

Do those drugs have an appetite suppressant effect?
My other thought is are you sure he doesn't have a stash of sweets in his room?

Yes they can do. He definitely doesn't have any secret sweet stashes anywhere, he's not that devious! He's also never been the greedy type, he'll eat a few sweets or a small cake or something and that will be enough for him.

At his last medication review his specialist nurse noted that he had lost 7lbs, and asked if he'd been having any issues with appetite. At that time I had not noticed any significant changes to his eating habits at home, he's never been a big eater.

for such a young child to lose half a stone… and you didn’t notice any change… are you sure?

What kind of school does he go to and what support does he receive

There are also some drugs that cause things to change taste or leave an odd after taste. Is that likely what's happening too? I've been on one where fuzzy drinks taste flat and everything tasted like metal.

Thanks for your reply. He has never really had these sensory issues before, its a very recent development. I have tried to engage him with cooking before, it doesn't interest him unless I'm baking a cake that he can mix, he'll just wander off once he loses interest and start playing with his Transformers or Lego.

He's just really thrown me this week, there were always things that he'd always eat, that he really loved and now he wont touch them. I've asked him what he think he might be able to eat, one of his meals this week was literally 1 vegetarian sausage and a plate full of baked beans as that's all he thought he could eat. He then sat with a mouthful of baked beans in his mouth for about 10 minutes before disappearing to the bathroom and coming out with his mouth empty and refusing to eat any more. He's always loved baked beans but now he says he can't eat them as they have a "skin" on them.

I'd definitely speak to his nurse, can she refer him to a dietian who specialises in this?
Dc2 has asd and afrid, never has the urge to eat the best advice the dietian gave us was build food into the routine and give smaller portions. Dc has 3 small meals, 2 snacks and one milky drink a day built up over a long period of time. Set foods and set times. Dc is still underweight but slowly putting on weight.

He's been growing taller so assumed he was looking a bit skinnier because of the height. In the last week it's really become properly noticeable, I can see his little ribs now and his shoulder blades are sticking out.

Half a stone is a Huge amount for a child to lose. I'd be calling the paediatrician/ specialist nurse for an urgent review given the further decline in his appetite.

He goes to a mainstream school where he is very happy and settled, he has support from the school senco who was his year 1 teacher. He has plenty of support in place to help him cope with his work and has a quiet place he can go to when needed. Nobody at school has raised any concerns with me about him not eating whilst at school, although I do appreciate the MTA's are probably not paying that much attention to how much individual children may or may not be eating. I am planning to speak to the staff at school when he returns to school tomorrow and asking if they could make note of how much he eats.

Well yes, that's what I thought when the nurse told me! She said it wasn't anything to be concerned about yet, was quite normal for the medication to affect appetite and to keep an eye on him.

I will be calling her first thing tomorrow morning as a matter of urgency.

Yes, that could very well be the case. He actually has been expressing a reluctance to take his meds for the past 2 days as it tastes horrible. He can't swallow it in pill form so we open the pill and give him the medicine with a spoonful of jam. Today I've not given him his meds at all and he's still not eaten anything.