Support thread 16 for parents and carers of young people with an eating disorder

[Mummyoflittledragon]

The old thread is almost full. I hope no one minds me starting a new one…

@10YellowTulips thanks fro updating us. It is very common for them to struggle coming home. I have said in here several times that my daughter felt safe etc in. Hospital and the nurses etc were really kind to her.

id she refuses to go they will come to the house. How is it due to work? You will take all meals there? Support from home is available. It is very common in for them to refuse to engage once home from hospital. Some say in hospital that they don’t plan to engage etc. The ED team will be very used to this.

I will be thinking of you tomorrow.

@10YellowTulips
Please try not to feel too panicked about this. I really get that feeling of doom. I’ve been around a little while now. And although I can’t go on personal experience, as Pearl said, finding the transition home difficult is very common.

Is your dd starting to feel things more than when she was really ill? I am thinking perhaps she is and this is a reaction to it all? Or at least it would be if my dd reacted like that. Because I’d know she wasn’t totally numbed anymore. And vocalising stuff, like how she feels about her changing body and finding a way to self calm, rather than completely shutting down or screaming the place down.

Hopefully your dd will be able to hear your words of love and encouragement and will be able to find the strength to go to the centre today. They won’t just leave you like this if not. Pearl is right. They will come to you. Will be thinking of you.

Good luck to all those getting GCSE results today.

It is not long until the return to school, college or University and I know this is hard for almost everyone. So sending postitive vibes and good wishes xx

Thanks @Pearl. I also hope everyone is doing ok and the GCSE results went well. Xx

Hi all, very glad to say the GCSEs went well, she got an A in one and a 6 in the other, so really happy with that considering how unwell she was it's incredible! Hope it went well for anyone else whose child was doing them.

@LurkyLurkyLou thanks for explaining further, that does sound quite similar to where DD is right now, except that she's never had much self-confidence to start with so regaining that is going to be hard for her.

@Mummyoflittledragon thank you for the info on weight gain and distribution, I'll certainly try to explain that to her. I really hope you will be able to get a bit of break while your DD is away, your stress levels must be through the roof trying to get through to her what she needs to do and think about to get ready for uni when she's so resistant. You are doing an incredible job though. Sometimes I can almost see why parents give up, it seems like such an impossible task to turn our young people around, but hearing from others doing the same thing helps you to hang on in there.

@10YellowTulips fingers crossed your DD will go tomorrow but if not I'm sure they will have a plan b, they're not going to just leave you to sink or swim at this point. Will be thinking about you.

That’s brilliant news @StressedANmum. Your dd has done incredibly well. It must be such a relief! I can’t remember if you’ve said what her plans are now?

As for us, yes, I think dh and I will mainly rest this week. I am absolutely exhausted as is he, especially with his job. He’s asked to be made redundant rather than take a different role - he can leave faster that way, rather than serving his notice. Not going to be a pay out as he’s been there less than a year. And we are going to have a little space to think about what next. He’s not yet ready to retire, but I think he’s not going to hold out another almost 10 years! Apart from vegging, we still intend to go out for our anniversary.

Dd unblocked us just before she left. Her attitude has been off the charts. To her, we are just cash cows right now - after racking up a big bill on dh’s card in June, we are now giving her the parental top up for the university maintenance loan spread over 12 months (that’s £488 a month btw, but we are paying for her gym membership and that will stop soon, so she will get rounded up £500 a month, £400 atm). She is dismissive, rude, offers no help, just expects money, really objects to doing her washing (which I mainly got her to do to help her, because she wants to live independently, and the autism means she won’t just pick up these skills). Dh’s final straws were her not saying goodbye to him before she left on holiday and that she took her washing in and left the peg bag on the line. She’s not helped around the house for weeks and isn’t doing her own cleaning.

I hope the week will be good for her too. She’s with a family, who are really quite protective. As in, they see their girls as much younger than their years in some ways. Because of the ED, we’ve parented dd very differently. We’ve given her as much freedom as safely possible, so that she doesn’t feel too controlled, to help keep her on track with eating 3+3. Unlike her friend, she’s been in the city at night a fair amount, a bit of clubbing and raving, going to pubs etc all on fake ID from mid year 12, whereas her friend will be 18 in a few days and her clubbing days are about to start.

So they’re at a very sleepy place, no clubs, a couple of sleepy bars, but nothing much. A little time for dd to chill and slow the pace. I am, however, concerned about eating. I haven’t told her friend’s stepmum dd is still struggling. Dd would see that as very controlling on my part. She’s 18. And could cause a lot of friction with the family if they say something to her. It’s hard to know what to do. And this is dd’s moment to start to think about her intake, with support of her friend, but without control over what she buys or the restaurants that she’s going to, which is going to be challenging for her. We paid for this holiday and were asked for a set amount for food. So idk if dd will eat enough. She has her allowance, well, I gave her less and said the money is for snacks and bits and bobs, and she can have more if she needs it. Dh and I are not paying for expensive activities. She should have budgeted for that. I know she hasn’t. Life’s lessons... And she even asked me just before she left if her allowance included birthday gifts for her friends. Yes, quoth I, it was in the spreadsheet I presented to you. (I think I budgeted something like £2 a week.) She’s in for a rocky ride at university I feel.

@StressedANmum well done to your DD!

Mine got the results she needed and is enrolled in college to do a levels. I'm worried about how she'll manage to concentrate when she's still significantly underweight and nowhere near recovered but I don't see what other options we have. She's been home since April and it hasn't helped her recover. It would be awful for her mentally to stay home even longer when everyone else is continuing their education. So we shall do our best! Camhs seemed to think college wouldn't want to enrol her as she is but they didn't seem bothered.

@10YellowTulips I hope today goes ok and if not more support is on offer for you both

@Mummyoflittledragon enjoy your rest this week as much as you can.

Thank you everyone - reassuring to hear that struggling to return home after hospital is normal. Yesterday was a mixed bag. She woke up super stressed and refused to go in- eventually I persuaded her to go there for a session with her key workers but no meal support.
today she’s supposed to have two meals there and FT-AN, then on Monday two meals again and another key work session.
Yesterday She had all her meals but lower quantities than she’s supposed to. However she was hungry at night so had quite a big extra snack although it did stress her a lot.
@Pearl97 - yes that’s correct, I am meant to take all food to with us to the clinic. We are allowed to leave in between meals and snacks but it’s not enough time to come home so it gets pretty boring.
@Mummyoflittledragon no my dd never has a numb phase - her illness has brought out stronger emotions - lots of anxiety, anger and depression. Maybe cause she’s adhd so is quite emotional anyway.

@StressedANmum really pleased to hear your DD got good GCSE results - well done her. It’s year 11 for mine this year - I’m apprehensive about how she will cope.

@Mummyoflittledragon must be hard to watch her transition to adulthood when you feel she’s not quite ready. Hopefully going to uni will teach her a lot and she’ll learn how to budget properly. These kids think we are just walking cash machines!

@10YellowTulips you are doing everything right. This is a marathon not a sprint, but one day at a time.

Making food and taking it there must be quite stressful? Staying there all day is a lot for you. Is your daughter ok while you’re there? It really is a strange time as this takes up more of your time than hospital and there is more pressure on you. I promise it does get easier but it is a difficult time.

is your daughter allowed to school in September?

@Mummyoflittledragon what university is your DD off to? is it close to home?

My DS wants to live 'as far away from home as possible' so has been looking at universities down south - the last thing we want is to be 5-6 hours away from us given his mental state and now eating disorder on top of that plus his autism.

We've also recently discovered that he's been making himself sick after eating - we had suspicions a few months ago, but there was always an excuse. And now it seems so much more obvious and I'm kicking myself for being so naive. He looks alarmingly thin.

We are trying to get him to hospital / GP urgently this afternoon - but he is very resistant. He has a meeting with CAMHS this morning at least. The trouble is being 17 nothing is shared with us anymore so we feel absolutely helpless.

@Weightlossworried
That’s fantastic news. Your dd must be over the moon to get into college! She’s been working incredibly hard on herself and despite ups and downs, she’s eating. And of course needs to be with her peers.

My dd was only a couple of months into recovery when she started 6th form. I absolutely wanted her to go. she needed to for her mental health. No one is going to want to eat if they feel isolated and unhappy. You will know if things aren’t right and can tackle them then.

@10YellowTulips
That’s really good your dd ate, even if it wasn’t as much as needed. And she recognised hunger signals and caught up later in the day. That’s a lot of progress. Hopefully, she will manage to learn to eat her meals regularly throughout the day. It’s much easier to eat in the evening once everything is done, because the food noise is dinning the more a sufferer eats.

Laura Hill describes this in her Ted Talk.

As for the numb stage, my dd was very subdued for a while, because of the extreme restricting. At one stage, she ate about 1200 calories over a period of 13 days. So her intake was tiny (I now know she should have been in hospital at that stage). I got her eating more after that. Well her friends did tbh. The one meal a day was with them for a couple of weeks after that. She was present physically, but wasn’t actually there, couldn’t follow her friend’s conversations, if you see what I mean. However, if you tried to get her to eat, she went to explosive rage. And of course was incredibly anxious.

And yes, it is really hard to watch dd. The only good thing is the university is less than an hour’s drive away.

@littlebabycheeses99
Is your ds able to engage and write his personal statement? If he is writing it, will he allow you to check it? I researched all the universities and did a lot of the work on my dd’s statement. She was too anxious to engage and constantly teetering on relapse. We went through all the options together and I insisted that she put down one local university. In the event, she refused to make it her insurance university, because she said it’s too close, and chose one far away that she hadn’t visited. (And as I’ve previously explained, she didn’t get the grades for either.)

Are you funding your dd? With our dd, we told her if she hadn’t visited the university, we wouldn’t be funding her. I reminded her of this when she put down her insurance choice. Dh and I took her to a few universities btw. But with the one far away, she wanted to go with a friend. And a few days before the last open day, she decided it was too far. Yet when it came to making her choice, she put it down.

It’s really normal to want to run away. My dd had all kinds of hare brained fantastical ideas this past year. She was going to live in Thailand as it’s cheap. Or France. Or Australia. I would just try to relax and do as I have done wrt the university choices. It is entirely possible things will pan out the same for him as for my dd.

I’d rather not say exactly where we are as I do give a lot of details. It sounds as if you’re north somewhere, We are sort of in the middle of the country. And the university she’s going to is ironically the first one we visited, but the course she like meant living years 2 and 3 abroad and that was a no from us and luckily a no from dd. She’s now doing something completely different. And it’s a great place, brilliant for SEN. We all liked it when we went.

Please can someone help? My 17 year old DS had a CAMHS appointment this morning, we thought it was an eating disorder referral, but it was just a bit of an 'ongoing assessment'. They said to get in touch with the GP and go through the community dietician?

The problem is that he is not engaging with anybody and is refusing most appointments with the GP etc. The CAMHS guy today asked him to go to A&E for an ECG and he said he would go but wanted to charge his headphones (he was supposed to have an ECG four weeks ago but it didn't get done). He came home and is now refusing to come out of his room and is saying he's not going.

We've called 111 because he's been severely restricting and purging and has had less than 500 calories for 2 days - they couldn't do anything because he wouldn't talk to him (he swore when his dad went into his room).

He has lost A LOT of weight and is continuing to lose it.

I don't know what else to do. I mean are we supposed to wait until he collapses or something?

@littlebabycheeses99 i haven’t been on this thread for ages as my DD has been making good progress and I took a step back for my own mental health. I came on today to share my positive news and give some hope to those struggling at present.
Yours was the first post that I saw and I couldn’t not reply. In your situation, I would call for an ambulance. You have tried going through the normal channels but without any success and anorexia is too dangerous an ill illness to take any chances. Even if he doesn’t need an admission, the ambulance crew will consider that you did the right thing by calling them. Currently, he is in denial, and this is very much a feature of the illness.
I would talk to him now and tell him that he can either come with you in the car to A&E or you are calling an ambulance. Give him the choice but either way he has to have the ECG. Over the years I have read of too many cases where an ambulance has been called and the young person has been taken to hospital there and then. It is not worth taking the risk. Unfortunately, they have no idea how ill they really are and because they are young, they can keep going until they collapse and that can happen relatively quickly. I don’t want to frighten you but neither do I want to minimise the danger or normalise the situation- which is anything but normal. Feel free to come back with any questions you have. There are a lot of very knowledgeable people on this thread.

Thank you, we were just about to phone them but hesitated. He would refuse to go with them though I think.

I'm glad you've had some positive news :-)

@littlebabycheeses99

I hope you’ve called 999 now. Sorry I don’t want to alarm you too much, but I am going to explain to you why your ds has been told to go to A&E.

Firstly, the ambulance crew can do an ECG on the spot. They won’t necessarily be well versed in EDs. Hopefully your ds will consent to have one performed on him.

You should explain he has been told to present to A&E, because he is severely restricting and is refusing. You can discuss options of calling the police with them if he won’t cooperate. The police can detain your da for 24 hours (ie force him to hospital) if they suspect his mental health is sufficiently compromised. It sounds serious enough that they may consider this an option. And you have age on his side, he’s under 18.

Just to explain to you, The heart is a muscle and the body ‘feeds’ off muscle when food scarce, which slows the heartbeat and reduces the heart rate. This restriction can lead to irregular heartbeat and eating related prolonged QT. That’s the recovery wave on the heartbeat.

Idk if the crew will know this, so you may have to tell them.

https://www.heart.org/en/news/2024/02/26/how-eating-disorders-can-damage-the-heart

So sorry. ❤️

@Shanghai101
It’s so lovely to hear you have good news to share. When you have a moment, I’d love to hear how you’re getting on.

You would be surprised. They will do stuff for others that they will not do for us. Sometimes we need that outside influence. I would just call them but before they speak to DS (assuming he is in his room) speak to them and ensure they are well versed on EDs Mummyoflittledragon has useful info in her reply that you could share with them. It’s important that they know how little he has been eating, how quickly he is losing weight now and that he is making himself sick. Good luck

Lovely to see a familiar name. And congratulations to your DD on her uni course.
As you may remember, my DD’s progress has been exceptionally slow, but it has been steady and we have tried very hard to always look at the overall trend

it was such a relief to me when she finally got her period back after almost 3 years. She seems to have got them back at a low weight but then she lost them at a low weight too so I guess that she is lucky in that respect.
Because of autism and ADHD, which were late diagnosed, our path to recovery has been exceptionally slow and we have had to have the patience of a saint.
So I wanted to come on here and say to anyone who is currently facing a seemingly uphill battle that there is hope. Some misguided clinicians labelled my daughter’s ED as severe and enduring but others were much more helpful (and hopeful) and recognised that the treatment she needed wasn’t there. Once she received person centred care and people really listened to her, whilst still maintaining boundaries, everything changed.
I found the Janet Treasure book “ skilled based caring for a loved one with an eating disorder” very helpful.
Remember to look after yourself in all of this, however hard it may be

@littlebabycheeses99 I don't have anything to add to the excellent advice from the more experienced posters on this thread but I hope your ds is getting or agreeing to the help he so dearly needs.

@Shanghai101 thank you for taking the time to share some hopeful news with us! My DD isn't recovering very well/quickly so it's so helpful to hear that they can still get there slowly.

The extra snack sounds promising @10YellowTulips, cling on to that bit of optimism if you can!

@Mummyoflittledragon thanks. She was disappointed with the results I think as she could have done better if not unwell but we are gently encouraging her to look forward.

We had an appointment with the psychiatrist today and he prescribed olanzapine. I'm trying not to get too hopeful but it would be great if they could take the edge off some of her reactions. We've tried to challenge one of her ed rules this week and got precisely nowhere. I would love it if she could face even contemplating it.

@Shanghai101 Thank you ☺️

It really is excellent that your dd is progressing and sustaining enough weight to have her periods. I totally understand the painfully slow situation and after our lousy experience with CAMHS 2 years ago, can see how your dd may have been labelled that way. And things are far more complicated with an adult, so it’s really great your dd found people to support her. And it sounds as if she’s allowing you to support her to some extent too, which is fab. The skills based book and Manual and Jenny Langley are so good for anyone, who needs gentle nudging.

My dd has likewise been diagnosed with autism and ADHD, just before she sat her exams. And yes, I agree about needing the patience of a saint. The clinical psychologist doing part of the assessment is foreign and she said dh and I need to put our feelings in the fridge for a while. I think that sums it up.

It’s really just a case of persevering and looking after ourselves as best we can. So I hope you’ve had people to help you with your mental health. It’s so important to do that.

@Weightlossworried
The most important thing is that your dd did enough to get to the next stage. Mine did too with her A levels. But only just. And got clearing grades, rather than enough for the course before the offer was dropped.

You may find not getting the grades your dd wanted will be helpful for this next stage. My dd got astonishingly good grades at GCSE. I think that was due to being able to hyper focus as she heavily restricting and not eating until 8pm. By the time she sat A levels, she had to keep stopping to eat. That broke her focus and probably irritated her, as she said she could only study for about 3 hours in a day, whereas she was at it all day with her GCSEs.

As for challenging the ED rules, this can take months and months of hard work. You just have to keep on. Not too much otherwise you’ll drown your own work out. The balance is hard. Lots of seed sewing.

Thank you @Shanghai101 @Mummyoflittledragon@Weightlossworried

We ended up calling 999.

DS got really angry when he realised and then ran out of the house - I tried to stop him but probably shouldn't have in hindsight. He got really really angry, husband chased after him, he started saying awful things to him then began hitting his head with his phone. Awful.

A lady from 999 then called my husband back but she wasn't particularly empathetic or helpful and it turned into quite a frustrating 20 minute call as she didn't see there was a need for an ECG. At this point though DS had barricaded himself in his room so we were concerned about him self harming etc.

Anyway we ended up not getting the ambulance. About 15 minutes later some medics arrived however, so that was a bit confusing! DS refused to speak to them at first but then relented - they were really good with him.

He got the ECG done - all fine. They said they were confused as to why he needed it, we did try to explain.

Anyway, the upshot is that DS wants us to die and is going no contact with us as soon as he can leave home. He has also only eaten a bread roll today.

Not sure what we do from here tbh. CAMHS were pretty useless when we called them today.

That sounds really frightening and disturbing @littlebabycheeses99 . The emergency services really didn’t handle this well at all, which is why I said they may need the situation explaining to them. Unfortunately not all medics will listen. The good news is that they said his heart is doing ok.

Did they give you a copy of the ECG? I would keep that and take it if you go to A&E or get a CAMHS appointment for ED etc. Unfortunately as your ds is 17 and if they take too long with the referral, they may just send him to adult services. When is he 18?

Do be aware that today he is ok, but things can go downhill very fast. So do keep an eye on him. And if he doesn’t eat anything more today, please take him to A&E. A bread roll is what? 100ish calories.

He sounds very mentally unwell. And this lashing out is all part of it, the desire to run away to the four corners of the earth. My dd was exactly the same. The brain structurally changes so that it thinks that food is poison and will fight it. They get incredible strength and energy until one moment, they don’t, which happened to my dd and she had no energy, so had to go on bed rest.

In the really bad times, dd went AWOL a few times, she tried to jump out of an upstairs window a couple of times, she was violent when we tried to get her to eat, screaming. And she spouted absolute hatred for at least 6 months. Wishing me dead. The sarcasm off the scale.

It isn’t them. It’s this awful illness.

What your ds needs right now is lots and lots of love and love bombing. He needs your strength, so that he can fight this thing. Ideally you will get him to A&E and someone there will listen. I’m going to add the MEEDS checklist to the resources thread. You can show this next time to a medic. It tells them what they’re supposed to do if a person is restricting and what to measure - BP, pulse etc.

Did they measure your ds’s heart rate or BP? I never thought to say about that it all happened so fast.

Thank you @Mummyoflittledragon I appreciate all your replies.

I'm not sure if they took his BP and pulse - they didn't mention it. They were with him a reasonable time but I'm not sure how long the ECG would have taken - I believe they give him the copy.

Thank you for sharing your experiences with your DD and I'm sorry you went through all that. I'm not sure I have the strength to keep going with this, we've had years of depression and low mood, it just all feels never ending and very scary now too.

I thought college would be a fresh start for him, that he would find his people and that things would be good again. How wrong I was.

I am so sorry. I get it’s relentless. Have you thought anymore about using a dietician or ED coach? Did you see my PM?

oh gosh @Mummyoflittledragon I did, I'm so sorry, I meant to have a look but things have just escalated.

I think we will go back to the GP and sort a dietician.

We've got a psychiatrist, psychologist and now CAMHS - so I think we need to have a think about streamlining because there's too many people involved now! The psychologist has been seeing him a while (a year) but we went to the psychiatrist to get some medication for his depression & OCD. Then I think he self referred to CAMHS! And we definitely can't afford to pay for any more private help.

I do think me and his dad need some help / therapy though too.