My 12 year old son hardly eats - desperate for any advice

[mysonhardlyeats]

( I have just posted this in general parenting but then thought someone on the special needs board may have experience of this issue - my son does not have any diagnosed special needs as far as we are aware so I hope you don't mind me posting here)

My son has always been a very poor eater and over his life has dropped from the over the 25th centile to the 2nd.

He has remained a very poor eater his whole life, and is extremely small and slim.

He is very particular about he eats, often refuses to try new foods ( he says it 'hurts his mouth' to eat things he does not like the taste of and seems to have a real fear of a ' bad taste'). Despite being particular about what he eats, he also goes off food from eating them too much, which is challenging with a child who also won't try new foods.

He is now 12 and his already poor eating has got worse in the last 6 months and he is losing weight ( not just dropping centiles). For example his eating over the last few days has typically been - a couple of mouthfuls of dry cornflakes, no snack, no lunch, a few mouthfuls of dinner and half a chocolate eclair. He says he is just not hungry, At other times he says he is hungry but does not want to eat. He hates being so small. and says he does not know why he cannot eat. He says he hates being weird for not being able to eat.

A paediatrician has ruled out a physical cause and he is under a paediatric dietician but they have not been much use - they keep giving him weird tasting supplements which he refuses as they taste weird ( they do, I have tried them).
Has anyone got any advice? I am desperate. Has anyone tried drugs to increase appetite? We would told he would not meet the criteria for AFRID and there is no AFRID service where we live anyway.

In the immediate, I would be concerned DS is hitting red flags in here and needs medical attention.

Is DS able to let you fortify what he can eat? Or would that prevent him from eating safe food?

In what way doesn’t DS meet the criteria for ARFID? Even if there isn’t a service locally, people can be referred out of area. There are possibilities other than ARFID too. For example, I have 2 DC with EDNOS because they didn’t quite fit ARFID. EDNOS isn’t diagnosed now but other EDs are.

Has DS had a sensory OT assessment?

There are a huge number of supplements, some taste better than others. Has DS tried lots of different types?

@StrivingForSleep

They said it wouldn't meet AFRID as he wasn't restrictive enough in what he ate. He does eat really slowly though. We basically have to keep prompting him to keep eating and even then he only eats very little. It can easily take an hour for one course at home.

He hasn't had a sensory OT assessment - what is that? I could ask for that maybe? He is very particular about his food - won't eat anything that he thinks is out of date or might not be completely fresh. He'll spot a tiny amount of something he thinks is ' not right' in a food and refuse to eat it. I've tried hiding things like a thin spread of tahini under chocolate spread but if there is a tiny pin prick of it showing, he'll spot it straight away and refuse the whole thing.

The supplements they have given us are powders that you make into milkshakes or ready made juice drinks, and then they gave us shots which were basically made up amounts of the same thing. They all have the same weird taste though and he hates them all. They then said to add them to food but then sent us a box all of banana - how many banana based foods do they think we can make? I asked for a plain one that I could add to all sorts of food but they said they don't have that. We made ice cream with the powder but he refused to eat it. I can try making a cake with one, but again, that will just be small amounts that he is getting in. It will be whatever powder is in a single slice of cake.

If DS is willing, ask to try more nutritional supplements. There are loads to try. There are ones that are ‘unflavoured’ although still have a flavour iykwim.

Does DS take any vitamin supplements?

Sensory OT is occupational therapy specifically looking at sensory integration. Not all ICBs commission sensory OT on the NHS but if your area does it is worth a referral. In some areas, you can self refer. Does DS have an EHCP? If so, it can be included in there even if the NHS doesn’t provide it in your area (or even if they do it can provide more). If DS doesn’t have an EHCP, you can request an EHCNA yourself.

I think we have worked through all the nutritional supplements available to us where we are.

DS does not have an EHCP - he doesn't have any educational needs other than dyslexia ( that they don't even test for here - we had to pay privately to get that).

We do give him a vitamin sweet.

The main issue is that he eats so little. I wouldn't mind so much if he had a narrow diet if he ate normal amounts of that food, iyswim.

Its really worrying.

If you have worked through the nutritional supplements your area normally offers, there will be others they don’t offer but can prescribe.

EHCPs are about more than academics. Things like emotional needs, mental health needs, sensory needs, etc. are considered.

Thanks @StrivingForSleep thats really helpful. I’ll look into that.