Pls me talk me through tube feeding if DS has to be admitted

[Verbena17]

So DS has ARFID and is at approx 76% and the ED team are watching him closely. He’s due to be weighed/p/bloods/health checked on Wednesday.

I’m mentally preparing myself in case it gets worse not better and they say he needs to be admitted to hospital for feeding.
He is autistic so I’m pretty sure there a policy now about having a single room?

I’ve been tube fed whilst poorly last year so I know how you have to swallow it etc but just wondering if anyone can just explain the process of what happens when they go in. How is everything made easier for young people and does every hospital have an ED ward where staff actually understand Ed’s?

Me and DH super stressed and worried about him. Also waiting to see results of his 2 week heart monitor so that’s extra worry.

What type of tube NG or peg (a feeding tube through the skin and the stomach wall)?
Ds has had both (not for same reasons as your ds but does have afrid and asd).
The NG tube dc had done under general anaesthetic (because was undergoing surgery) and at home. Was quite a simple procedure and dc said only minimal discomfort. Did say when eating orally it felt odd.
The peg was a much bigger surgery and involved two days of no eating and on a drip and 48 hours of pain (was doped up on morphine).
However the positive effect of the tube feeding within days was worth the discomfort. Dc has been tube fed via a peg for 5 years (and prior to this 1 year via ng).dc would rather not have one however will admitt the quality of life he has now compared to before is unrecognisable, the difference in dcs educational ability, concentration, reduced fatigue, being able to join in activities, maintaining weight has been amazing.

There is some psychological adaptions needed for both child and parent. Ds was very adamant he would carry out all cares which took longer but now as a young adult is fully independent (although along the way we've had some periods where he's wanted to much control and its been detrimental to his health but Dr's always say typical teen!).
Can you speak with a dietian or peg nurse we've had amazing support from both of ours from before the peg was fitted they showed dc what would happen using photos, a torso and a head with an NG tube inserted, the feeding pump and let him play with them. Which actually helped me as well as him.
Also when he was discharged we took photos and sent them to his siblings, cousins and school so everyone around him just accepted it and he felt it was much easier to go back to school/see people.
I think the biggest things that helped dc and me was talking about it before and time (it soon became normal for dc not to sit down to a meal with us but at first I hated making meals) He now eats orally but gets most of his calories from feed still. Dc would say its his biggest annoyance having it but the best thing for his health and therefore has some acceptance (especially since I asked all the medical team to be honest with him and say at this stage there is no end date). With his asd he needed it in black and white.
So basically ask questions, have a cry and then get on with it till it becomes normal is how I did it.

No advice but know how worried you must be. My adult son is autistic and has ARFID we got close to admission a few times when he dropped what he would eat and didn't pick an alternative. It's awful as a mother to feel that you can't get food into your child. Ds has never improved, there are only two things he eats now but he can swallow vitamin tablets which is a blessing.

@Millionaireshortbread0 that’s amazing your ds adapted to both tubes so well.
I meant NG as I think if he was admitted, it wouldn’t need to be long term feeding. Just to get his weight back up to more where it should be then therapy I guess. Tonight I’ve just arranged a deal where he’s going to eat some noodles now and then 8 pieces of dairy milk before bed. That will bring his cals up today to about 1660 which is much more than in past few days.

@hiredandsqueak that’s so hard with only 2 safe foods that your ds eats. Do they provide him with enough calories - I remember watching the show with Dr Gillian Harris - where there was a child who only ate wotsits and dairy milk but they were in relatively good health. My ds also has cyclical ARFID - sometimes I wish he would have a set number of foods and eat loads of them but he doesn’t. He regularly picks up then drops safe foods so we never know what his intake for any day will be.

Wotsits used to one of ds's safe foods until they changed the W on the bag, likewise Jaffa Cakes and the J. He eats four specific burgers daily, only one brand and only if served on the blue plate he has used since he was a toddler. He has those at three o' clock he wouldn't eat them earlier or later and besides that he eats Dairy Milk but only large bars that he breaks up not the individual segments (he was bought a bag at Christmas and they were rejected) or the individual sized bars. He's currently at a decent weight, it does fluctuate so a cold where his sense of taste or smell alters means he doesn't eat and goes thin. It's difficult, ds has had loads of input over the years, went to an independent specialist school that had experience of ARFID previously, he left without them being able to get him to even contemplate trying any other food. He never actually feels hungry so he eats by the clock and would happily starve if what he wanted wasn't there for him.

@hiredandsqueak that must be very difficult for you when your ds is poorly and reduces his choices. Have you had any input from adult ASD services in your area? I’m just completing a referral form as ds is soon turning 18 but I’m pretty sure the help we receive now from ARFID trained paediatric specialists, sadly wont be on offer to the same degree via adult services.