Autistic son refusing food for a week, what should we do?

[Peanutgurgle]

Our Autistic/adhd son went from eating to eating nothing at all a week ago. He was initially drinking just water. We took him to the GP and he was then referred to ED. Blood was sugar was extremely low but they discharged him on the basis that he was to drink three glasses of apple juice a day and allow us to do his blood sugar once a day. He was also referred to CAMHS crisis team. He wasn’t referred to Eating Disorder Clinic. He is also clearly very depressed.

We are now 7days on from initial food refusal. He is being seen by Crisis nurse on thursday afternoon. We were intending on taking him back to ED last night but he stuffed two mouthfuls of stale bread into his mouth and insisted he was going to start eating and that he was now hungry. He managed a a slice of sweet potatoes and two cherry tomatoes last night. Then two mouthfuls of stale bread this morning. He won’t let me do his blood sugar and he won’t drink apple juice as he is insistent that he is now eating so doesn’t need to.

I am at a loss. His calorie intake is clearly very low. I have no way of monitoring him. What should we do? Thank you for reading and any advice.

I am so sorry to read how difficult and frustrating this has been for you and your ds. I hope now he’s been admitted to hospital, he will get the help he so desperately needs. It is ok if he needs to be NG fed for a little while. The most important thing is nutrition. I understand what you are saying about the rigidity. Hopefully, however, the rigidity this time is due to the lack of nutrition, which with a bit of luck will then reduce a little and allow him some space to reassess the situation and restart to eat for himself.

Just sending support and a hand hold, @Peanutgurgle.

This is a horrific situation for you but you have done so well to keep advocating and pushing for help for your son, Peanutgurgle. It shouldn’t be this way that the systems that are meant to be there at times of crisis make it so very difficult to access treatment, be heard, and receive meaningful support.

I know that now he is in hospital it is a whole new level of fear. Shouting into the void from a distance perhaps. I don’t understand the obsession services have with “the reason” for a behaviour, and the gatekeeping of resources that way. Whether it’s autism or ED or any number of medical reasons it shouldn’t matter, and I’m so sorry you’ve been through such an ordeal just to get to the admission stage.

Lean on us here, we are all behind you.

So he has been in an A and E bed all night. No bed on a ward available and no review. He hasn’t slept at all. Nor have we. At my wits end. Still no fluids as obs are managing to hold firm. Have just asked them to do MEED assessment. I don’t know what more to do. Trying to juggle my other children’s well being but we don’t really have a support network.

It’s an impossibly difficult situation. Are there any nursing staff you’ve clicked with when they’re doing his obs? Could you ask them what the plan is?

Don’t hold back- let them see you weep if necessary. Tell them you are worried that he will not be alive when you check on him. Really ram it home how terrified you are and how you need help now. It’s not how it should be, but sometimes I found that it helped them to see just how desperate I was, and to remind staff who drop in to the case and just see obs on a chart just how long things had been going on, and how things are worsening not improving. Just to stress, I’m not criticising the staff- but sometimes saying “he has lost 3 stone now in x number of weeks” focussed their mind somewhat.

I know it’s a phrase that’s suggested for lots of other situations but would “that would be an unsafe discharge” be worth committing to memory now in case they attempt to fob you off home?

Oh how frustrating for you. I’m so sorry.
I agree with everything @DaffodilsInAJamjar is saying. Medical obs are good until sometimes they suddenly aren’t. And that can change very quickly.

You really do have to point stuff out to them. My dd has a seizure medical condition, where her heart stops beating. The main trigger is medical settings. I had to explain to them any medical obs has to be in a facility with A&E, as although it should just restart, I didn’t know if it would in her emaciated state.

He has finally been admitted. He is on fluids and has been seen by Psychiatry and Dietician. They have been kind and listened and made a clear plan. When I came back this morning our son had relaxed slightly. We did a crossword together.

After speaking to psychiatry he got really distressed and we have been banished to the other side of his curtains by him. It’s the first time I have seen him cry. I can hear him sobbing now but he is refusing any comfort. He has previously been distressed but detached with lots of stimming.

I 100 Percent agree with @DaffodilsInAJamjar and my friend from other threads @Mummyoflittledragon We all have knowledge and experiences we wish we didn’t have, and have learnt the hard way we need to fight for what we need. It absolutely shouldn’t be that way, but it too often is. I now try and help as much as I can on threads like these, as I know how desperate I was when my daughter was poorly.

Sorry I just saw your update as I posted. I’m glad he’s been admitted and he’s showing emotion. Other will help you now, you’re not dealing with this alone. They will be able to give him the help he needs.

I'm glad he's finally been seen by the appropriate staff and that you've got a plan going forward. I hope things start to improve for you all 🤞

Another who works with eating disorders here- he will likely need hospital care if this goes on particularly around the drinking aspect
Sounds so difficult

Sorry just seen he has gone in, hope this helps get the ball rolling in getting him help x

Hi @Peanutgurgle, I’m just another mnetter who couldn’t read and run. I have two ND sons and while I don’t have experience in what you, your DS and the rest of your family are going through, I just wanted to send you my love and offer a handhold.

While he’s in hospital, please don’t hesitate to raise a Martha’s Rule concern if you don’t think things are being taken seriously enough:-

https://www.england.nhs.uk/patient-safety/marthas-rule/

While it’s highly unlikely (although possible) that your hospital will have a ND nurse specialist, there may be a learning disabilities specialist nurse that you can ask the nurses to refer your DS to. They can help with support and reasonable adjustments as hospitals can be so overwhelming.

If your DS doesn’t have one already, maybe you could consider filling out a health passport for him as this can be very helpful for hospital staff - particularly if he’s unable at the moment to advocate for himself. It might just help to make things a little more bearable for him.

https://dy55nndrxke1w.cloudfront.net/file/24/.ZuLn47.Z3Oq7eJ.ZkJp.0QsoHD/Health_Passport_A4_Editable_2022.pdf

💐💐

How is your ds 24 hours on? I was so pleased to read your ds has been admitted. I hope he will get all the care he needs.

@Peanutgurgle thinking of you x

Still thinking of your situation @peanutgurgle and hoping that you are receiving support, both for your son and for you too, as you face this.

Hi all. So sadly not very much further on. He was referred by hospital dietician and Crisis intervention to ED clinic AGAIN. They declined him again, stating that he showed no signs of an ED and must continue to attend A and E for admissions for refeeding until he is able to care for himself better. He was discharged from hospital as medically stable and wouldn’t comply with their eating plan. He has entered something of a manic phase at home. Preparing elaborate meals and up all night but still eating and drinking very little. Has lost 10kg now. His self neglect is now pretty revolting for all of us around him.

We have found a private psychiatrist who is willing to see him next week.

So sorry op this sounds really hard. I’m a year down the line from you, almost identical situation. I guess from hindsight I’d be more forceful and less guided by her and her compulsions. I ran around all day back and forth to the shops if she even hinted there’s something she would eat. She Definitely became more erratic and obsessive about cooking as her brain was more starved, ate none of it. I shouldn’t have provided low fat options, zero calorie options, access to the internet before breakfast is eaten, friends round or trips out with no dinner, etc.

We’re slowly getting there now as I found a motivator and put my foot down. She needs to be eating properly and gaining weight before I’ll consider helping her move out, which she’s desperate to do. It’s working. She’s just made a bagel for lunch (she was insistent a month ago wheat was killing her and wouldn’t touch it) one slice of vegan ham ( meat ick) and two slices of pickle with ketchup. Lunch for months has been a baby portion of ready brek and a 0 cal jelly. So a tough approach is what I’d suggest as letting him work through this on his own is IME a non starter. I hope you find a way through soon ❤️‍🩹

So sorry to read that things are still so bad. It sounds like the hospital stay wasn’t particularly helpful? You must be worn down. I can’t think of anything helpful to say, just know we’re all here if/when you need us

@Peanutgurgle cooking meals that you won't eat is classic ED behaviour. Many girls become obsessive bakers. I'm so frustrated for you!

What will he ingest right now? Is there any way to stretch it slightly?

Oh @Peanutgurgle I am sorry that you have not moved on. sending hugs. I wish that I could offer advice.

This ED clinic sound unbelievably crap if they can't recognise an ED!

Is it possible to be referred to another clinic under the right to a second opinion?

I am so sorry; you must all be knackered with all this night time staying up.

Seeking a second opinion | King's College Hospital NHS Foundation Trust https://share.google/oV3Fea7SveL0c5g4d

In what time frame has your ds lost the 10kg? More than 1kg a week is red on MEED checklist. I’m just going to share the resources thread I set up (that anyone can please add to if they have useful information) MEED is currently the last
post on this thread.

www.mumsnet.com/talk/eating_disorders/5566004-eating-disorders-resource-thread-for-parents-carers-and-adults?reply=154291261

I am shocked they are saying there is no evidence of ED. Are they saying this is anxiety? I don’t understand. We had the same sort of issue with dd. Not diagnosing, because of not being able to decide what sort of ED it is. Or if it is even an ED. It’s all about which money pot to allocate her to. Meanwhile dd was wasting away.

I agree with asking for a second opinion.

Sorry. Coming back to update. Mummyoflittledragon he lost 10kg in 2 weeks. We referred staff to the MEED guidelines so many times it was ridiculous. Still no clearer as the why the ED clinic wouldn’t see him. He has been seen privately now by an ED consultant at Maudsley who said ED is a definite component alongside OCD, depression, autistic burnout and early psychosis. I will write a complaint to my trust when I have the energy.

He is now under regular CAMHS though I’m not sure how long for, as he won’t engage with any therapy or meds. They are trying but he is very stuck.

So he now eats food he prepares. Not at regular times but enough that he has regained all of the weight he lost. It is still incredibly disordered and he will only drink from one bottle. He won’t accept any input from anyone on what to eat. I have left a good common sense nutrition book lying around. I think he is probably meeting most nutritional bases.

He is still terrified of sleep. Hasn’t been in a bed since all this started. Won’t go in his bedroom at all now or upstairs in our house or even in rooms other than the kitchen and living room. He still won’t access any tech, even tv. Has a brick phone he will communicate with my Mum and Dad on but that’s it. Hygiene is still a big issue. Won’t use anything artificial eg soap or deodorant but also won’t accept natural alternatives. Remains entirely socially isolated.

He won’t talk to us about he why’s, only about current affairs, science, economics. But definitely not feelings. It feels quite bleak but out of the adrenaline fuelled acute state and now quite chronic.