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…

My goodness I’m so sorry to read this. I’m sorry for such a personal question and please don’t feel the need to answer but that weight / bmi triggered the admission / ng?

I don't think it was necessarily the weight that triggered it (although she was underweight I guess most patients are when they're assessed) I think it was more that she had low heart rate and blood pressure and we also told them we were really struggling to get her to eat more than a few hundred calories at home.

The rule in hospital was eat the meals or you must drink meal replacement shake. If the shake is refused then you must have NG tube and the meal will be fed that way. The tube was fitted after 2 days of refusing meals and meal replacements.

I thought the tube would be horrifying but it was actually really helpful for her when eating was just unimaginable for her.

@Pearl97
I forgot to respond. It continues, of course. 😬 Dd signed up to halls without talking to us this morning with only a 24 hour cooling off window. The first I heard were 2 emails, one asking to be a guarantor, not even a text heads up from her. She slept a friend’s house and ignored the phone. She hasn’t declared any disability, seizures etc. And I would have preferred through the university. But she’s paying I suppose.

I spoke to the accommodation company. Unusual circumstances and they will allow us if we become guarantors to cancel with a letter from the GP, which theoretically I could get if needed.

Later, I tried to have a discussion with her and dh about this, moving plans etc. Dh had told me not to blow a fuse with her (I didn’t intend to), then did it himself. We now have demand avoidance central. So I now have to wait for her to calm down, which let’s face it, is probably going to take days.

She goes on holiday with her friend and family on Thursday. She gets back, then we are away on the bank holiday and she reckons she’s moving out on 5th. Her mate is dropping her off apparently. All organised. Zero work done for meal prep, budgeting, feeding herself and so forth. Not that she’s agreeing to any of it. Also no thought to what she may need to take. What a joy.

I am relatively stoic about it all and wondering if she will actually go through with this plan. Deep down I think she knows she shouldn’t leave and is copying everyone else.

On the plus side, it’s our wedding anniversary. Dh was really sweet. Told me he had it all sorted and all he wanted me to do was to write something in the joint card he had bought for us to share. He then got up today and produced flowers and chocolates from both of us to both of us. We are both too shattered to go out. Dh needs some minor surgery and spent last Saturday afternoon / evening in A&E for possible admittance before being told he could wait and expect an appointment for a month or so. Dd will be away next weekend, so we will celebrate then.

@Pearl97 Im not sure what the plan with weighing is yet - today she got weighed but I think it was an accident rather than the plan. She was still the same as at admission. Her consultant visited yesterday and said if she continues to do well she should get discharged middle of next week. Today she managed her whole plan without any need for supplement and even has an extra glass of juice. She is still quite distressed though and spends most of her time pacing around the ward. The next challenge will be to get her to eat at home - they’ve said we’d transition to outpatient meal support initially.

@Holly221288 i completely get where you are coming from and feeling like there’s nothing you can do to make them eat. We’ve gone through months of her only eating when she wants - usually just a tiny amount per day or nothing at all. Being in hospital and having intensive meal support from the ED nurses has made such a difference.now I need to hope it sticks.
Perhaps an admission is what your daughter.needs too.

@Mummyoflittledragon this is a lot to deal with. I loved reading about DH and your plans for next week. I think all you can do at the moment is go along with what DD is planning. It is such a strange time for everyone when they go to Uni. You’re doing great supporting her and not going crazy! Keep us updated. I’ve been thinking about you. Remember all the fab advice you give others, please make sure you look after yourself.

@CuppaTandBicky you are offering some great advice. It’s amazing to see how far you’ve come! I do think that like I did you’ve come round to thinking that maybe an admission to really help your DD would be a good thing. I totally get that. Trying to help now before it just goes on and on. Please make sure you are kind to yourself as you really are doing so well.

@10YellowTulips I am really glad you’re doing so well. The hospital won’t want to keep her if she’s eating and her stats are ok. The home team should come out for at least one meal a day and then she will be weighed at clinic. It sounds like you have good support. I wouldn’t rush home from hospital though, try and really get her calories increased while you are in there. I’m really pleased you have a good team to help you.

@Holly221288 we really do understand that this is a really hard time. The worry is overwhelming, as is the desire to gain knowledge etc. I would say try and take it one day at a time. It is good you have support from the crisis team. I know this stage is really hard as you don’t know the team etc yet, but you have them in your home. Take all the support you’re offered. We are also here to help.

@Raspberrysins I really hope you are getting a little time to yourself this holiday. I know how important the summer holidays are to teachers. You are doing a great job with your daughter. Often we are so close to things we can’t see how far we have come. Sometimes it feels we aren’t progressing, I know you probably always want to be progressing, but in this race not going backwards is as important as going forwards.

@makemineadecaf I am glad you have found us and I hope tomorrow goes ok. As others have said, the easement is quite long and there are quite a lot of questions. Everyone’s experience is different, but the main thing is that you have support now.

@StressedANmum how are you doing? You are offering great advice and I hope you’re looking after yourself.

@Weightlossworried how are you doing? I hope things are continuing to improve since your meeting. I really hope the feeling of doom has gone forever!

Sending everyone love and support. I’m glad we have each other xxx

@Holly221288 mine is older, similar size, does indeed maintain weight despite rarely eating meals. To start with it was mostly liquid calories - milkshakes, juice. But pps make a good point about blood sugar etc, my DC has never made any form of recovery and remain very unwell mentally

@Mummyoflittledragon happy anniversary! It's lovely to read your DH is taking care of you a bit today.

@makemineadecaf I'm sorry you have to join us here. My DD is 16 too and a similar BMI. She was diagnosed in march. We've had a lot of support too, although I don't always agree with the ed team's approach, I can't fault them in terms of the time and effort they give us. I hope the appointment on the 17th goes well..

@Holly221288 will your DD come downstairs and eat with you? Or can you stay in the room with her? It's just a way of keeping up some pressure on her. It may be harder for her to refuse with your constant presence? Our team only tried meal support at home once, DD came to the table but completely refused to engage with them and ate nothing. It was excruciating!

Thanks for asking after us @Pearl97 My feeling of doom around appointments has definitely lifted. I feel a bit more empowered to try and push DD a bit harder. For the first time though me and DH aren't quite on the same page. He wants to tread more gently than me. For example, DD wanted tickets to a band and I said she'd have to be healthier to go. DH went ahead and bought the tickets without us having a proper conversation about what we mean by that. I meant weight restoration, she thought she could get away with eating more on the day. DH thinks we should back down and just look for any kind of improvement in attitude. I disagree, I think we need to be clearly pushing her. Neither of us is right or wrong necessarily - but we're getting frustrated with each other.

Meanwhile DD is now cross and back to insisting if we all left her alone she'd magically recover using wishes, prayers and fairy dust presumably.

@Holly221288 have they mentioned at what point they’ll admit your dd? She sounds so unwell, it’s scary that they haven’t insisted she’s admitted if her bloods are worse than before. I honestly don’t think you’ll turn this around at home and the longer she carries on restricting and losing weight the harder the turn around will be…

Thank you everyone so so much for your replies. I was feeling so lost and lonely in this and I this message board has really helped me. I really appreciate all the tips and advice.

@Girliefriendlikespuppies they said we had a couple of weeks to try to turn things around. Which interestingly she has bought up today. She has one red and two amber on the MEED plan. But she is getting weighed on Tuesday then more bloods and an ECG on Thursday. I do feel like I can't turn this around at home

@unbuckle I'm really sorry that your DC remain so unwell

@Weightlossworried she has ate half of her evening meal (the only thing she will consume) in the lounge (with the door open) and then finished it at the table with me. She refuses to leave her room for the other meals/snacks. The Crisis team have been twice this weekend and she hasn't left her room (as you say excruciating). I am going up in 5-10 minute intervals for each meal time.

@Pearl97 thank you xx

@10YellowTulips how is the admission going? Are you doing ok?

@CuppaTandBicky that is really interesting that you have managed to adapt the plan. It seems very sensible and more achievable. Our team seem very insistent on being at the table.

@Mummyoflittledragon I hope you managed to have a nice anniversary. Thank you so much for all of the advice

This message board is an absolute godsend. I don't know how I'd be coping without it. Nobody in real life gets it.

I wonder why they're so insistent on the table specifically? I get why they want you to supervise meals but I wouldn't have thought it matters where. It sounds so stressful for you though. I'm glad you're being seen again very soon. Perhaps they'll put more support in place then.

Popping in to second @Weightlossworried description of this board as a godsend, it really does make all the difference being able to talk to people who really understand! Hope everyone is as well as can be expected with all we've got going on.

Thanks for asking after us @Mummyoflittledragon and @Pearl97, pleased to say that DD is continuing to do well physically, she's up to 49.2kg now from a low of 40.2kg a week or so after admission and is apparently going to be cleared for gentle exercise this week, which she's very pleased about. We have also had our first couple of snacks off the ward. They didn't go that well to be honest, it was very difficult to get her to accept the right amount of food, and definitely a fair bit of anorexic thinking still going on, but it's early days so hopefully that will get easier. She says she finds it a bit scary to go outside the rigid structure of the meal plan in the ward, so it will need some more work on thst.

I am actually making an attempt to look after myself for a change, something I have got very bad at while she's been so ill, and have joined a gym!

@makemineadecaf welcome from me too. My DD was admitted to inpatients at a fairly similar BMI to yours, so don't be surprised if this is raised as a possibility at the assessment. I would want to say to both you and @Holly221288 not to be too scared at the idea, I was really worried about DD going in, and she has had an Ng tube plan and had to be detained to get us to the point we're at now, but it really has been the only way to make progress with her and the progress has been really quite quick once it started, not just with weight gain but with changes to her thinking as well. We'd had months of restricting to 500 calories or less, one meal a day, and six months of outpatient support, and got nowhere. Sometimes it just is beyond the ability of parents to manage this illness at home, no matter how hard we try.

Good luck to everyone for various appointments this week, and with GCSEs, DD's waiting on two GCSE results herself, she's convinced she's failed them, but I live in hope.

@Weightlossworried
Thanks xx. I get exactly what you mean about magical thinking and recovering on fairy dust. We are still there…

As for eating at the table, I think it’s just establishing the traditional family meal setting. You’re close to one another and the close presence is designed to help the sufferer to eat. Sitting side by side is often best and makes it less oppressive - you can’t actually watching them.

The work of recovery then becomes focused primarily at this one place and the idea is that it becomes familiar and less daunting. I also wonder if it’s also contained, so that other areas of the house are not then expected to be a therapeutic tool in the same way. So the sufferer can relax and watch tv with a parent in the knowledge they won’t be expected to eat… idk.

For dd, sitting with a bag of crisps in front of the tv is easy. And not everyone can manage to sit at the table several times a day. I think it’s easier if you’re NT.

@StressedANmum
Wow that’s an incredible weight gain! And I’m so pleased you’re finding time to look after yourself and join the gym. As for the snacks, it’s ok your dd is finding things hard. It’s a process. My dd is used to eating out and about in different places. And finds places to hide to eat if she doesn’t want to eat in front of others. Others actually means me primarily tbh, due to the threat I pose to the ED.

I’ll also be keeping my fingers crossed for your dd and her exam results on Thursday.

@Holly221288
Thanks xx. From what you’ve said, it sounds as if you’ve managed to get your dd to eat more than once today. Is that correct? With my dd, I just used to make the food, take it to her room, put it down on her chest of drawers next to the bed and say ‘this is your (lunch), please eat it’ and leave. But I could trust her to either eat or not and not to dispose of food. Well I did have the issue for a very short while when I tried to impose and extra thing for breakfast and she bought plastic bags to dispose of it. But I sorted that out. No instances since.

@Pearl97
Thank you xx. Such a lovely and inspiring post as always. ❤️

@makemineadecaf
How was the eating today?

Today I had a big cry whilst listening to a very old track. Velvet Underground Sunday morning. It was perfect for how I felt. I haven’t listened to it for years and years and it’s quite haunting. Then I found that bit of peace, dusted myself off and continued.

Big hugs everyone, onwards and upwards xx

Yes that makes sense about the reasons for eating at the table. DD does actually come to the table for meals but I'd take her eating anywhere as long as she eats!

There's nothing like a big cry to some moving music. I have Spotify playlists for this purpose. Big hugs to you as well

@Mummyoflittledragon the weight gain is amazing, but (not that I want to look a gift horse in the mouth here) I think the fact that it's been so fast has meant her brain hasn't had much time to adjust and she's still struggling with a lot of the thinking around food and weight. She very definitely wants to recover, which is a huge positive, and she's trying hard but the patterns have been ingrained for months so it's inevitably going to take a while to reliably change them. It's a work in progress, but there's no doubt I'm very grateful her physical health has improved so much.

She's panicking a lot at the moment about the future, her education has been severely disrupted by this and her pre-existing mental health problems, so even if she passes these two GCSEs she'll only have three altogether, and no matter how much we say about being able to do things later, she finds it really difficult to cope with the fact that she's so far behind her peers. She's clever, had a grammar school place initially, but everything went pear shaped at the transition to secondary and she's never been in full time education again since.

Hope your DD has calmed down a bit by now, and that you have a lovely time celebrating your anniversary this weekend.

@StressedANmum my DD also restored quickly, when it happened, and it shattered her self confidence. Her therapist focused on that first, and we had to be very gentle with her and our expectations of her. It was hard as we were so relieved the physical danger had passed! You'll get there, such great news your DD has made that progress

Hi @LurkyLurkyLou thank you, we are obviously very pleased she's doing so well, just a bit nervous about the mental end of things. If you don't mind me asking, what was it that damaged your DD's self-confidence, was it worries about her appearance? Our DD is unhappy most of the weight has gone on her tummy so far, her arms and legs are still thin. She hasn't explicitly said but I suspect she's also worried that the fact she's put on weight so quickly will mean it's going to be difficult to stop putting on weight when she's weight restored.

Hope things are going ok for you at the moment.

Hi hope it's ok to join, I don't know which way to turn anymore to be honest.

I have a 17 year old DS who has been seemingly restricting food since March - there was always an excuse and we bought into it to be honest, it's only in the last couple of months we've realised there's a big issue and things have gone downhill fast.

He has been under a private psychologist for some time due to depression and OCD. Then we sought a psychiatrist to get him some meds so he's now on Sertraline.

However, we know with 95% certainty that he is autistic but is refusing to accept it and will not be assessed. We think there are other things going on that the psychs won't tell us because obviously a lot of it is private. He seems to be very troubled.

He has self harmed and now we realise has an eating disorder (we suspect bulimia - we've only just worked out that he is likely making himself sick).

We are distraught. His weight has dropped significantly. We got him to A&E about 6 weeks ago and they have diagnosed him 'anorexic'. We don't know what tests he had or what went on because he wouldn't allow us to go in with him. Same with the GP - I've been back and forth with him for weeks and weeks and they've said it's just his 'depression' and hopefully he should get back to eating soon (what?). Now he has taken any permissions away and we are not able to get any feedback from the doctor at all.

CAMHS are now involved and have said they can refer him for some help with his eating disorder - but only if he agrees (he won't).

He has had days of being under 500 calories but will then eat a bit better. He's eaten nothing today.

He looks awful, he's horrible to us all the time. We don't know which way to turn. Does anybody PLEASE have any advice? It is so difficult with him being 17.

@StressedANmum@LurkyLurkyLou I can imagine rapid weight gain would be very tricky for mental health. So yes, therapeutic support, which some CAMHS / ED teams seem to wait to give, I imagine will be generally offered at this stage. But idk. It’s food they’re gaining weight fast. The quicker you weight restore, the better the long term prognosis. They’re obviously working very hard.

As for weight on the tummy, and in case you don’t know, this is very normal. It goes there first to protect and repair the vital organs. It will only start spreading down once the body is sure there is more sustenance coming. And it doesn’t redistribute evenly, meaning the body can look a bit disproportionate. It all works itself out in the end so maybe you can reassure her about that?

@StressedANmum
It’s been tough. With dd’s expectation of moving in halls on 5th (and asking her mate to take her) and her going on holiday with her friend from tomorrow, plus us then immediately all going away with family this bank holiday, there is no time to waste. I decided I needed to poke the bear every day with various aspects. So Monday at the hairdresser (after which she refused to have lunch at the correct time, having not eaten since 8.30, went awol and blocked me), Sunday by text, today she’s home. Yesterday I needed to wait, otherwise she’d have gone AWOL again.

And apart from anything else, she needs a reality check. She just wants to party. I don’t think she gets what academia actually means either. I also don’t think she understood she’s now in a legally binding contract to the tune of 8k, even without having signed a tenancy agreement, which I explained today. Along with the guarantor stuff. There have been a lot of more gentle discussions around some of this stuff, such as the day before results day. But I need to go for it now.

So I’ve been asking her stuff like, as she obviously isn’t going to agree to my help with all the self care skills (cooking, shopping, planning, budgeting etc), what are her plans? She came up with some stuff off the cuff, but no thought out plan. I also spoke about the realities of not passing the year if she parties and being kicked off the course. About wasting loads of money in the process and accruing debt, which she still thinks will sort itself out. And we talked about her friend, who is now rake thin and how as a parent, I’d never give up like her parents have, that this is the basics of self care. I really pushed it as I felt I could. We were at the hairdresser for that, so her behaviour was a little tempered and she character assassination stuff. I have no friends. No one likes me.

I also sent her a message of love Sunday from Dh and me, about how she is probably really confused about where we have gone as parents, but we are the parents she needs etc. It was also a bit of a shit sandwich, with the middle bit discussing that she is highly vulnerable due to her ND and finally told her she has severe ADHD and explained it’s masking the autism (she refuses the latter). Told her she was running away from herself, not us and that we have always been right here with her. That she just needs to be there for herself and ended it with more praise, love etc. She removed herself from the family group chat and said it was a vile message and slept at a friend’s house. So lots of running away from the issue. I told her, she’s just got to be there for herself and she will see we haven’t gone anywhere.

She came back yesterday lunchtime and I acted as though everything was normal. I thought she was getting it yesterday as she ate to plan without prompting. But today she’s been sullen and moody. Told me to fuck off idk how many times. Ate breakfast at 11.30 after prompting and lunch after screaming at me as I was explaining that she forgets to eat, which triggers brain changes etc, she finally had it at 2.15 and I made it.

The coach has been on holiday btw. We had a session yesterday. And I thought she’d say I’d gone too far. She did say the message on Sunday would ideally have been delivered in stages, but it was more important to do it and things are really time sensitive. So I am just koko. And really detaching again.

As for what to do now, the coach told me to allow dd to leave us blocked, just for the holiday if that’s what she wants. We are paying for this one. She’s going away with a friend and her family, so if anything untoward happens, I believe we will be told. She said to talk to dd about everything when she gets back, including the dropping off at halls on 5th. This doesn’t fly for us.

@Weightlossworried
Thanks. I used to bang out rap when walking the dog when dd was really ill. No headphones as I have 2 dogs and need to hear them. I never used to like rap, but it really got my frustrations out.

Hi @littlebabycheeses99
I am sorry you find yourself here. Just to let you know, they are correct to have diagnosed your ds with anorexia, with purging. It’s likely he’s restricting for long periods, then after a period of restriction suddenly gets hunger signals, eats what is possibly (or at least to him under the circumstances) a disproportionately large amount of food, feels guilty and purges. Not eating causes changes to the brain and makes you not want to eat. People who are autistic don’t always get hunger signals until they’re desperately hungry.

As for what to do, that is super hard when your ds won’t let you engage with services. The good news is that he is to some extent engaging himself. He’s also on meds. And has some level of support. The only thing is idk if the psychologist is well versed in ED. It is highly specialised.

For the immediate, if he doesn’t eat. Or eats less than 500 calories in a day, both are red on MEED. Medical emergencies in eating disorders. You should therefore head to A&E with him after 24-48 hours. If he’s lost really a lot, or the loss is in a short period of time, definitely don’t wait much more than 24. More than 1kg a week is a lot. And that’s also a red.

It looks as if you have funds. Do you have more? I would recommend getting some private help if you are able. For dd we use a coach. We engage with her, dd doesn’t. She’s doing parent coaching with us. She’s an ex mental health nurse, in patient, the priory. And she has taught me (and dh to an extent too) how to get dd eating, and now so much more as ED is rarely about the not eating. That’s just a symptom. Dd was 15 when she became ill. Like you, I also rationalised for quite some time. She’s now 18. But she’s way way better. Still mentally unwell.

There’s some info on this thread I recently started. I think maybe I should also recommend the coach we use on there. www.mumsnet.com/talk/eating_disorders/5566004-eating-disorders-resource-thread-for-parents-carers-and-adults?reply=154168375

As for the ASD assessment, your ds wouldn’t be able to have one right now anyway. Restricting food can make someone, who is NT appear ND, so doing one will serve no purpose. So I would shelve that idea for now and wait until he’s put some weight on. And I get it’s hard to get our dc to assessment. My dd as adamant she wouldn’t. And yet now she has a diagnosis of ADHD and ASD. I didn’t tell her till she had both as she wouldn’t have coped with just ASD, which she currently isn’t accepting right now.

Thank you for the detailed reply. I think we're going to try 111 this evening. He does have a doctor's appointment tomorrow afternoon but he hasn't eaten anything today yet.

I didn't see reference to the coach you use? If you wouldn't mind letting me know I'd appreciate that.

Sorry @Mummyoflittledragon I can see the coach you're referring to now, thank you.

@littlebabycheeses99 I’m going to PM it to you because I’m not sure if it’s classed as advertising. This is very confusing.

@littlebabycheeses99 I’m sorry this is all happening to you. I’m glad you have a GP appointment. I think calling 111 or going to A and E is a good idea. You definitely need help and it’s good to have reached out to us, as we have knowledge we wish we didn’t have.

It was her physical appearance, and the way her body felt in her clothes. We had mirrors covered (still covers available for her to choose) and she would only wear 2/3 outfits on rotation and avoided seeing people where she could. We took it slowly, gave lots of love and her therapist slowly rebuilt her self confidence. Tbf her body also readjusted and when she was healthy enough to exercise that helped

She's still slightly underweight, has a whole list of fear foods and needs a lot of support but the self confidence is back and that's a joy

Hi everyone - weee back from hospital now. She was eating well there and her vitals and bloods were ok all along so she’s been discharged. We are supposed to be going to the outpatients service and will have all meals supervised there initially - then starting to have some meals at home if all goes well.

DD is finding the transition to coming home again really tough. She says it reminds her how nothing is really better, everything is still sh*t (her words) and now she’s “fatter”. It was so bad it took her a couple of hours to come inside - she walked around the neighbourhood and then sat on the doorstep. Has anyone else struggled with the transition?

She is saying she won’t go to the ED clinic tomorrow. I hope I can persuade her in the morning but if not I’ve no idea what they will do instead. Maybe come to our house or do it remote? I guess there’s also a big risk she’ll refuse to eat - she refused evening snack so it doesn’t bode well. Wish me luck for the morning - I feel like I will really need it.