Anyone had any help with very underweight ds with ASD and ADD. ? What should I be pushing for ?

[bizzey]

DS is 17 and is now very "body aware"
He always has been in the low percentile (2 ish mark)

But he is really skinny .
No out lines in his body tone and stuff.
Got a telephone appointment tomorrow with DS's permission and request
What should I be asking ?

I/we don't want to be fobbed of with the ....well that is just how he is .

It is affecting him .
Thanks
(Yes he does have issues with food and swallowing.
, And textures.)

Is he not eating much? If he's not, do you think he has an eating disorder? Does he take medication for the ADD?

My Ds is also 17 and is very underweight. He's been below the 1st percentile for at least 2 years. He has also been quite unwell physically, due to his low body weight.

My Ds has a diagnosis of ARFID.
www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/types/arfid/

It's been a massive battle to get that diagnosis, as many HCPs have not heard of it. He now has some very specialist NHS support, that is out of area, as we can't access anything locally.

I think you need to chat to the GP about your concerns regarding his health, they may be able to refer to a dietitian or suitable MH support. Ds was on the CAMHs caseload already, so they facilitated the specialist referral.

@Punxsutawney
Thank you so much for your reply.
We have got a f2f appointment booked.
She said she will most likely order some bloods and a stool sample ( yeah ! Good luck with that one !)

That ARFID link was very interesting and resonates with me about him .
He has just started taking ADD meds which has a side affect of appetite suppressant which is concerning considering the situation we are in.

Thanks again.

Good luck with the GP. At least they can rule out any physical issues. I would definitely mention the medication though, as that could be having quite a significant impact on his eating.

@Punxsutawney , just a little update as you were so kind to reply to me
(and I think we have crossed paths before where you gave me help (pip?) )

She is going to refer him to a dietitian as an " urgent" due to his age . Once he hits 18 things get harder to access ?
Lots of bloods as well .
So at least he /and I were listened to

Thank you again for your kind words .

Glad you had an understanding GP, do push further though, if you are worried. When I mentioned ARFID to ours, she said "I've never heard of that". Even now, it's difficult to find a HCP who is willing to keep a regular eye on Ds's physical health. Most people only think of anorexia or bulimia, when they think of eating disorders. And it was hard to find anyone who would take Ds's eating difficulties seriously. We are fortunate now that he now has some limited access to a specialist service, but it is online.

Hope the dietitian is helpful. We were advised to put Ds on a multivitamin, so that might help too?

You are right about many services stopping at 18. It's difficult for young people with additional needs, who can be emotionally much younger than their peers.

Hope you make some progress. 💐

@Punxsutawney sorry for tagging you ,but DS bloods came back .
Amazingly not anemic !
But VIT D is "13" .
(I think "50-75 is the norm /low end?)
Have you come across this ?
Sorry for pestering you and thank you .

punx what support do you get? My dd has diagnosed arfid but was discharged by eating disorder clinic as they felt she was managing to eat her 3 safe foods and not losing weight.

bizzey I think it's not too unusual in the UK to have low VIT D. Has the doctor prescribed supplements? You can definitely get some yourself if not. The dietitian might be able to advise too.

TikTokCat it's been a complete nightmare to get support and a diagnosis. He is currently being treated by The Maudsley Hospital ARFID clinic.

mccaed.slam.nhs.uk/young-person-and-families/our-services/feeding-clinic/

It's been a long drawn out battle to get 10 sessions funded at this clinic, as we don't live in London. Ds is significantly underweight and we are still struggling.
We were unable to get any input locally, despite Ds being on the Camhs caseload for other mental health difficulties and having a ASD diagnosis.

There is a real lack of understanding around ARFID and many HCPs haven't even heard of it. Even many ED teams don't understand it. Our local one refused to even see Ds.

@Punxsutawney thank you .
I can believe that clinic is so close to me ...but I am the next bourogh ! That is not included .. for self referral .

I will keep all this in mind in the phone call .

Quite close then bizzey! I think some local ED teams can support ARFID but ours refused to even assess Ds, so we had to try and find a service that would see him and diagnose him. Our GP didn't want to help weigh or measure him. We live over two hours away from London.

I know that patients and their families that live within the hospital catchment boroughs don't have limited sessions like Ds does and can access more help. Parental support sessions for example, that we can't get.

Unfortunately he only has the 10 sessions and that's it. It's cost our local NHS CCG nearly £6k for the assessment and sessions.

I think ARFID can be a very long term ED and is not treated the same as anorexia for example. Some think it's just a bit of fussy eating. It's not very well understood and it's still difficult to find anyone to take Ds's physical health seriously. CAMHS once told me that his weight was low enough that if he was anorexic he would have to use a wheelchair. But as he had ARFID they weren't concerned. Very frustrating that it's so hard to get any support and very much a postcode lottery.