ARFID and Weight Gain Question

[Verbena37]

My DS (11yrs) has had ARFID since weaning and it's only getting worse.
He also has a diagnosis of high 'functioning' ASD and is highly sensitive to smells/textures/tastes etc.

I've just called the hospital to get a record of his weight and height measurements and from the last two recorded, whilst his height is increasing, his weight seems to be very slow.

In October 2014, his weight was 27.4kg. Height was 137.8cm
In April 2016, his weight was 30.75kg. Height was 144.8cm

The weight increase over that time of only 3.35kg seems very little.
Anybody thin the same or does it seem normal?

It seem that his eating, or lack of, revolves around anxiety......which he has been having since starting secondary school in September.
He only eats a small amount of chocolate type cereal for breakfast...sometimes only a couple of mouthfuls.
He generally doesn't eat lunch there. Occasionally, he will eat a small bag of nachos or a hot chocolate.
I can normally get him to have a small snack when he gets in (kit Kat or crisps etc).
For tea, he isn't really even having proper meals.....he only wants super noodles but then says they make him feel sick and leaves them.
He did et some cheesy mash and a bit of Yorkshire Andrea carrots the other night but left the sausages.
I have to top him up at supper, giving him a bowl of cereal (occasionally porridge or weetabix) or fudge yoghurt.

He isn't sleeping until around midnight (we were doing a sleep programme that worked for about three months but has gone back to being late again).
He looks very pale and thin. DH thought he was starting puberty as he suddenly had loads of fluffy blind hair on his arms and legs but I've got a feeling it's lanugo to help keep him warm as he has no body fat at all.

DH tells me not to get stressed or he will be worse.....I try to stay calm and tell him why our bodies need some food etc.
I wonder though if there is something I can start doing now to get him help.
I'm booked in for a food and eating parents workshop with the local authority but they haven't given a date yet.

[Verbena37]

Should have read fluffy blond hair, not blind.

[sleepy16]

I'm having the same problem, my son is 23kg and age ten, he is autistic and more and more foods seem to be of limits.

[sleepy16]

Oh and my son is on melatonin for sleep, which is slowly not having much effect anymore.
And I do think anxiety has a lot to do with my sons eating habits.

[Verbena37]

Sorry to hear you're also having the same food issues Sleepy.
I've actually just put my DS weight and height into a uk BMI calculator for teens and children and it says he is fine.

I'm pretty sure he isn't fine though. An increase of only 3.35kg in 18 months doesn't seem that much. Plus, a BMI calculator can't work out malnutrition.

I'm going to buy a good multivitamin for him tomorrow. He used to take them then kept forgetting but it's up to me to make sure he takes them.
At the moment, it just seems every aspect of his life is all over the place.

[Pythonesque]

Actually, prior to puberty that rate of weight gain sounds about right. I learnt 2 kg per year from the age of 1 onwards as a guide to estimating children's weights. So that would indeed be 3 kg in 18 months.

A multivitamin sounds a good idea, and it sounds like you are getting some things right despite the difficulties. Keep up the good work!

[CherrySkull]

i can sympathise.

my DS is also 10, and has ARFID amongst other Autism/SPD/ADHD related issues.

I'm lucky that what he will eat is largely carb based, bread, pasta, potato..etc, but he's still quite slim compared to the other boys in his class!

He is also on circadin/melatonin for sleep, and i wish i could get a multivit down him as he's always quite pale and has dark eye circles.

[Verbena37]

It's tricky isn't it?
DS makes it even harder I need that he doesn't really love any food.
So even if there is a fave food of the moment (super noodles), you can't guarantee he will always eat them.
He is so up and down. He is never really hungry, never really fancies anything and only says "feed me now" when he hasn't eaten a meal once days. He just has the bare minimum and then feels full. I don't understand how he keeps going.
He only drinks milk or water.....more milk than water. He will sometimes drink a hot chocolate which is a bit of a variation I guess. He would drink coke but he is only allowed it as a treat when we go out to the movies or out for dinner.

[CherrySkull]

my DS only has milk on his cereal, otherwise its the devils liquid.. He only drinks water!

i have to remind him to eat, otherwise he wouldn't, and he has the same thing for breakfast and lunch every day.

Dinner is a bit easier, but i still get bored.. he eats mash or chips, pizza, sausage and chicken nuggets. He will eat bolognese, but only the pasta, he leaves the mince/sauce. He eats lasagne and pasta bake.. i've got good at adding things to the sauces with those! I get his calcium in via the cheese!

The sugar comes from biscuits, which he eats custard creams or choc chip cookies, the only other sweet thing he eats are ice ring donuts from morrisons.

[sleepy16]

My son used to eat pizza, but it has cheese on it now so won't touch it.
He finds it hard to eat with cutlery (he has hypotonia and dcd) so sometimes he doesn't have the energy to eat.
He is going great through a bad patch with school,routine etc atm and we are waiting for an urgent referral to the pead.
So hard sometimes, just wish I could help him :/
But verbena you know your child, and his weight does seem ok but it's what there eating as well to give them the healthy balance that they need.
Which I know is so bloody hard.

[Verbena37]

Yes sleepy, the anxiety makes the eating 100 times worse.
The pizza thing is the same for my DS. He will only really eat it at Frankie and bennys. The cheese thing is tricky....he used to eat it grated but now doesn't it eat at all.

[Verbena37]

Totally awful Christmas!
We are on holiday and since we got here, DS wobbly tooth has been so stressful for him that he has barely eaten since Thursday night. .
He has drank a little each day but all he has had is a half a crossaint and a pancake yesterday and nothing otherwise.
He has had some milk today but that's it.

The tooth is literally hanging now by a thread but he says it's painful and DH thinks the gum may have grown into the tooth a bit but I'm not sure gum can do that?

Oh and he has point blank refused to brush his teeth since Thursday night!

Anybody got any ideas?
I feel neglectful but I refuse to hold him down or he will remember this forever and just be even worse next time he has a wobbly tooth.

[Verbena37]

Thanks Poltergoose.
We r at Center Parcs so only have milk available really until the shops open but to be honest, he is refusing all drink. He drank about 1/4 cup of milk this morning but noting since....not even water.

He currently has 7 wobbly teeth and seems to have had them wobbly for months! He also, like your DS, hangs onto them.

[Verbena37]

Phew!
All is well......he tried to eat lemon cake for brekkie and it came out when it hit another tooth.
At least the next two days will be less traumatic!

[Verbena37]

It never ends......he hadn't eaten for so long that he has been throwing anything he eats back up again!
Oh well.....at least the tooth is out and he is more excited about eating .