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.

Just to emphasise, the week before DD1 was admitted to hospital, the GP was still 'going to write to the dietician...'. As soon as I asked them to document that it was ok to care for her at home, she wrote us a letter for the hospital. Once we got to A&E we were sent straight to paeds and admitted. We left 9 days later, were almost readmitted 3 days later, and would have gone down the NG route if the psychiatrist hadn't prescribed olanzapine.

I think you'll find that once someone realises how ill he is, things will move.

Had meeting with Crisis team today. Chocolate tea pot. The most frustrating two hours of my life. All he got was a referral for therapy which will take 12 weeks. Believe me I stressed all that I have told you. There was no minimising. I told the crisis team that I felt I needed to take him back to A and E and the Nurse told me that they would just refer back to crisis team and we would still be in same position.

He ate a few spoonfuls of porridge this morning, a small bowl of greek yogurt and fruit for a snack, three pancakes with some feta at lunch and this afternoon a slice of dry bread and some more greek yogurt. He just refused tea entirely.

I am actually not afraid of taking him to hospital. In some ways it would be an enormous relief. But it feels like he is doing just enough to stay out.

I agree that he is yelling for help which is part of the frustration at the crisis team for being so inept and not recognising his distress. He just kept saying that late teens is a tough time for Autistic boys.

I’ll take him back to GP tomorrow. Insist on obs and if they don’t feel able to complete then ask for a referral to paeds via A and E

F@cking hell @Peanutgurgle if we ever need reminding our NHS is in crisis! This is absolute madness! I’m so angry this is happening to you.

I would still take him to A and E as this isn’t just metal health this is physical health. I wish this wasn’t happening, but I also wish you were being supported.

They wont want to admit someone with ND, thats the problem, there are guidance and policies to prevent admission for kids on the spectrum (also adults on the spectrum to be honest).

At work we have had this a lot, we insist the carers take them to hospital and they are usually admitted to be honest.

I'm sorry for you all. CAHMS is not fit for purpose. I hope you have more support from your GP.

How are things today, OP? Have been thinking of you and your son and hoping you have been able to access some support

Also thinking about you x

me too xx

I hope the lack of response is because you're actually getting some help and haven't got time to check your phone. The fact that you were alert to your DS's needs was brilliant.

Just checking in @Peanutgurgle and I hope that things are ok with you and your son

Sorry for silence. It has and continues to be a living nightmare. I will try to be succinct.

Our son has continued to restrict fluids and food and has become increasing rigid. He has become completely withdrawn. Sitting in a dark bedroom on the end of his bed, rocking and humming. Mostly mute.

We have called 111 more times than I can recall. Called an ambulance as he refused to go to hospital after refusing all fluids and food for 48hrs. They wouldn’t take him in as they said he still had capacity.

ED clinic referrals from GP and A and E refused as he is under CAMHS. CAMHS doctor refused to refer as said it wasn’t an ED just autism/depression. Instead prescribed sertraline which he won’t take.

Had CAMHS review today. They told us to go straight to A and E but still refused to refer to ED clinic. He is now being admitted to an adult general medical ward due to weight loss (no shit) and concerns regarding refeeding syndrome. He has already said he won’t eat or drink whilst in hospital, so I don’t know how they will manage that. He has had an urgent referral to dietician.

It is all horrific. My son bears no resemblance to the boy he was three weeks ago. He feels unreachable. At some points during this time I have been going to his room wondering if he would be alive. It feels utterly against any maternal feelings to leave him alone in this state on an adult ward but I know we can’t keep him physically safe at home.

You can get vitamin water a protein water on line

i drank only these for 10 days and was ok

see you gp asap

Disgraceful that 111 wouldnt take him in, Ive had this at work countless times and the child is always admitted for refeeding in this condition

He may well be sectioned OP, prepare for this, its best for him, he needs to be fed and get better, it will be for the best.

Glad to hear he’s in hospital. I know it’s an adult ward but you’re right he’s safer there where they can monitor and you aren’t having to constantly keeping phoning around.

Oh how awful, I’m so sorry OP, I’d been thinking of you, I hope things start to improve even a little very soon.

Thank you for all the thoughts. It’s a comfort even from strangers.

sorry things are so bad. do you think sectioning him would be helpful right now? there are a few people on here who are very knowledgeable about sections and how they work, which might be helpful to you.

@Peanutgurgle i am so sorry this is happening to you. I am so glad you are finally being listened to.

I know calling 111 and asking an ambulance to take him to hospital goes against everything you feel you should do for him, but this is what he needs. One day at a time now. He may need medication etc while he is refed. His mind isn’t his own at the moment as he’s so lacking in nutrients. The doctors and nurses will make sure he is looked after. You need to look after yourself so you can be there for him.

I know this feels like you’re living someone else’s life, I promise it won’t feel like this going forward. He is in the best place although you want him home.

We are here. Thank you for updating us, I, like others have been thinking of you.

@Peanutgurgle I'm so sorry but it's great that he's now in hospital. Ultimately he will be assessed for competence and it may be that he will need to be sectioned to be treated, but they may be able to persuade him to accept treatment voluntarily. It doesn't matter if they see it as an ED at this stage because the risk is physical not mental. Once the immediate risk is reduced they can start looking at the mental health.

I think he will end up being sectioned whether we want it or not. He understands this. It has been explained clearly. We have close family members who have been sectioned many times so it is sadly familiar territory.

He is so complex. What part of it is the autism (which won’t be helped by antidepressants), which part is depression, which part ocd etc etc.

He will accept the fluids and NG but I am absolutely sure he won’t eat or drink in hospital or accept medication. Once he is set on something he is immovable.

Thank you Pearl97 and Lougle.

I'm so sorry to read your updates @Peanutgurgle . I don't have any practical advice to offer but I have found this FB group to be helpful during my Dd's journey. There are parents on there who have experienced having their children sectioned. There are also many parents of ND children on there. https://www.facebook.com/share/g/1FSD5i5GwS/ (hope link works ok - if not the group is called Eating Disorders Parent/Carer support (UK). You have to request to join).

That's ok. Keeping him alive is the priority and an NG can do that. They can give him electrolytes to balance his system.

Thank you Tickingcrocodile. I have requested to join.