Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

sorry @Shedqueen that your DD has been admitted too.

We started to make some progress and she is now having 4-5 (out of 6) of the meals/snacks orally. It's all incredibly exhausting but I am encouraged by finally seeing the oral intake going up. Hopefully, we can get her home if things progress like that and then need to look at increasing support in the community.

Glad to hear there has been some progress @Curlyhairedassasin . I hope this has made the professionals realise that you need more support.

Thinking of you @Shedqueenthere aren’t any day units in our area either but speaking to parents I think they would be really beneficial.
Fingers crossed this continues @Curlyhairedassasinslow, steady progress. Has your dd started to gain any weight yet?

@Proseccoismyfriend yes, a bit. it's slow progress but moving into the right direction.

Good to hear some positive 'green shoots' @Curlyhairedassasin that's good news about progress and weight.

Good to hear @Curlyhairedassasin. Hopefully they are planning for intensive support when she is discharged.

@Shedqueen best of luck to your DD too.

I hope you are both finding ways to decompress and look after yourselves while your DDs are in hospital.

Thank you for updating @Curlyhairedassasin. It’s really great to read that your dd is making progress. I hope you have found a little time to relax.

@Shedqueen I’m really hoping that your dd will make progress now she’s been admitted, and that they are listening to your concerns.

Thank you. It’s her third admission. I’ve decided to try hard to keep some boundaries in place this time so I can keep sane and so she doesn’t get too comfortable. She has spent 12 of the past 18 months in various hospitals so coming home where she has to eat is hard for her. I don’t want her to prefer being there than here.

it’s heartbreaking though; she’s in the same hospital as autumn 23, weighing much less than she did then. We have to keep hopeful for all our young people x

Happy Mother’s Day to all the incredible women reading this thread.
And thanks to the amazing mums who started it and provided a lifeline for so many of us over the years. 🌸🌸🌸

Happy Mother’s Day to you all 🥰

Thank you. Lovely sentiments. Happy belated Mother’s Day to everyone. Hoping that spring is bringing new beginnings and some smiles.

After 5 days of not eating anything, she eas sectioned (3rd time) and tube fed. She started to drink small amounts of supplements yesterday so progress. The case worker said on the phone to her that perhaps she could come home next week.i have seen her eat to get of hospital beforeand then stop as soon as was dicharged so I said I’d expect a significant change both in her motivation and the level of support for her. She is not happy with me.

What do people think about being tough with this horrible disease? It seems like she is totally at its mercy at the moment with no help to resist its demands. I don’t know if I’m expressing myself very well. I don’t want to be cruel but is there a place for tough love to help her?

I’m so sorry @Shedqueen. I have had to be very careful with my dd as she has suspected autism and PDA. When she was in the depths, forcing her would not have worked. I needed to firstly step back and coax her out of her shell.

If you look at Girliefriend’s posts, she had success with the Eva Musby approach. We did not. It made everything worse. I remember Girlie saying some time back something along the lines of: if the ED isn’t raging with you every day, you're not pushing hard enough. We are on it with dd but in a more gentle way. So I think it all depends on our loved one.

One thing I have learned with this is to be very composed. It’s important even if I’m in bits to not let dd see that anything gets to me. She doesn’t eat? Don’t start pleading or get angry. The ED will love that. And to smother dd in love and care. Dd really struggled with that one in the beginning as she was so angry and hateful primarily towards me.

If by tough love, you mean giving consequences for actions, yes, this I do with dd. She has to eat 3 meals 3 snacks and an extra snack on exercise days to be allowed to go to the gym. If she hasn’t eaten properly or her extra snack, no gym. But approached as ‘I know you really want to go to the gym so if you agree to eat this, then I can take you.’ I think this overlaps with Eva Musby.

I applied the same rules to get her to eat lunch as her rule (once she restarted eating every day) was not until 8pm. On reintroducing lunch, I told dd I would collect her from school if she didn’t eat. Much later she confessed that she only ate one of the 2 sandwiches and that didn’t include the crust, but it was a start. I couldn’t crack breakfast and in the end we put our holiday on the line 2 days before going away last year to get her to eat 3 meals and 3 snacks. And it worked. In between, I used lots of the New Maudsley approach to coax dd out.

When she tipped into relapse earlier this year, dh came home after a session with the ED coach and imposed that dd couldn’t go round her friend’s house that evening. He ended up having to restrain her otherwise she would have disappeared into the night, which she has done before. She tried to jump out of an upstairs window and ended up calling the police on him/us. No action was taken against us in the end. We were told potentially the referral they wrote would be sent to social services, the GP and the school but almost 2 months later we haven’t heard anything. I informed the school.

We got dd agreeing to 3 meals 3 snacks again from that one along with a few more foods including pizza and some protein in her morning snack. She went to her friend’s house in the end. Her push back on that one was yes, she’d agreed to all this but that evening she was only eating dinner if she was allowed to go to her friend’s house. Had we stopped her from going, she probably would have reneged on the whole agreement. She needs to feel a certain level of control in order to comply. Almost 2 months on the morning protein has had a huge impact.

As I say, we are using an ED coach privately after CAMHS was a complete let down and signed dd off declaring that she didn’t have an ED. That had a lasting impact of over 6 months as dd believed the psychiatrist. For dd relationships and being the same as everyone else are both very important so preventing her from doing stuff with her friends is her currency.

Of course your dd is raging with you. You’re advocating for her and totally doing the right thing. It’s good she’s drinking and taking the supplements. The hospital, I presume, has a record of her prior admissions to know that she risks regressing the moment she leaves. I don’t know anything about how hospitals/ED clinics really operate and I hope they will work with you this time to get an agreement with your dd prior to discharge to eat 3 meals and 3 snacks as leverage for her getting out. At the end of the day, you have to do all the hard work once she’s left. What would happen if you pushed back and said you didn’t want to take her just yet if you thought the hospital were trying to discharge her prematurely?

Thank you for taking the time to reply. I’ve not had any success with the eva musby/FBT approach. Traumatised us both without positive results.

By tough love, I mean setting an expectation that she eats enough to return to a safe weight which she is committed to maintaining it and to engage in some form of education. She told her father that this would mean she was getting better and she doesn't want to. I don’t think we can have her home again if not.

Hey @Shedqueen it's really hard thinking through this stuff, and I agree with @Mummyoflittledragon that you know your dd best and one size doesn't fit all.

we did take quite a tough stance on things, particularly when my dd was in the depths of this horrible illness. In my work I have some understanding of behavioural approaches, and I know the theory that 'intermittent' rewards are most powerful. This is one of the theories behind eg gambling, and it means that even if you lose 99 times out of 100, the 1 time you win is so powerful it compels you to keep going. I think this applies in the refeeding stage of anorexia, and I made sense of it as if ED gets one 'win' it will compel it to grow stronger and keep going. So I made sure that there could be as few 'wins' for ED as possible. That meant a hard line around 'life stops if you don't eat', we sat with her for hours while mouthfuls went in, and we were very concrete with what we expected, and carried it through. There was an expectation that every bit of every meal / snack was eaten, and we worked hard to eliminate discarding, eg crumbling, hiding, spitting or smearing of food in an attempt to avoid it. For a long while I would use a rubber spatula to gather up everything that had been smeared and get dd to finish that. The consistent approach of not letting ed win was the point to all of this, and it did feel pretty mean at times, but I could see when ED did get a win (prawns down the side of the sofa cushion was a memorable one!) things would be harder again for a while. My dh found this quite hard, he would often say 'she's eaten most of it, can't we just stop?' but I was adamant that we couldn't let ED win, and I do think now it was the right thing, although it felt very hard.

my dd is probably neurodivergent too, but doesn't have a pda profile so I can see how this would not be good for someone who does. For my dd having a clear, concrete and consistent set of rules is a helpful thing, things that are unexpected or ambiguous are harder.

taking a tough approach feels pretty horrible from a parent side too, there were months and months where I was a shell of myself, and spent many hours weeping. I didn't believe we would ever get out of it and I felt like this was going to be our life forever, but a pretty rigid and consistent approach did eventually start to improve things.

i was thinking of everyone on this thread last week as I was doing some diy around the house and I got round to painting over various marks on my kitchen and dining room walls made by thrown or discarded food. As I was doing it I was remembering the individual incidents and reflecting how far we have come.

so, long answer to your question, a tough approach did help us. If / when we experience relapses I'll probably try this again as a first line. But I've learned from people on this thread mainly that it doesn't work for everyone. It's hard to figure it out, because it invariably makes them much more distressed at the start, so it can feel like things are getting worse, but physical and brain recovery is a building block to more general recovery, and so I saw it as short (relatively) term pain for longer term gain.

my dd doesn't hold it against me, in fact she wrote me a letter this weekend for Mother's Day thanking me for sticking by her from day 1, and not giving up. I had made peace in my mind while things were most awful that I would take our relationship being destroyed if it meant she could recover, but it hasn't worked out like that - our relationship is much closer now.

@Shedqueen We didn't have much success with Eva Musby/FBT either. We just idled around and nothing seemed to work.

On a positive note, DD turned a bit of a corner. Still in hospital but without Ng tube and eating all meals. She currently has cake daily (when she had not had cake in years). I am so happy but if feels like someone planted a chip into her head overnight. I struggle to compute it all but I take it for now! She is still in hospital and we are going to start some home leave soon.

@Shedqueen What would be the alternative to having her home? At one point when my DD was sending us away when we went to visit her, they did talk about supposed accommodation for her (she was 17). I thought that would have been disastrous - and she says herself she would just have starved. Is there is a more positive alternative, like a good unit?

@Curlyhairedassasin So pleased to hear your news! Hopefully, regular nutrition is hoping her poor brain heal.

@NanFlanders there had been discussion of her being in hospital for a longer period to establish an eating pattern. She was discharged previously on her 18th birthday when she was entirely dependent on supplements. The option of 6/8 weeks in a local hospital is seen as better than a specialist as the local contracts are apparently with units that aren’t good. If I thought there was a good SEDU, I’d push for that though. She deserves better than this.

@Shedqueen
I can’t really answer how you’d get to that kind of agreement when your dd is so fixated on maintaining where she is at the moment. Poor thing. I’m so sorry. It’s so hard when they’re so starved. I know my dd would never have agreed to that then. In fact she probably wouldn’t now. I can tell you a little more about how and where dd eats as we don’t actually do straight FBT. Idk if that will be of interest or helpful at all to you.

We do modified FBT. Modified because she also wouldn’t cope with straight FBT, ie eating every meal with dh and / or me. She had a no eating before 8pm rule and would eat in her room, alone. Then I got her to eat the sandwich at lunch but that was only if she was at school otherwise it was just dinner in her room. Then we got her to eat lunch every single day either at school, with friends or in her room.

Once she’d been eating like this for a little while she was told this is the last day she could eat dinner in her room. We wanted to sit down as a family. She griped but complied because by then she was eating more and was a tiny bit more reasonable. I had the advantage that I was preparing her food and it was always the same thing. I slowly increased the quantities of food at an imperceptible level and the calorie intake slowly crept up.

Then I tried to introduce breakfast. As so often true, breakfast is the hardest for dd to eat. I tried for a few days but she only ate it at the last minute often at lunchtime. I told dd that this was the last day she could eat like this and panicked as I didn’t have a plan. I spoke to the ED coach and she go for 3 meals 3 snacks and put the holiday on the line and mean it, which we did. Dd ripped up the plan but ultimately complied. The only meal we were asking to eat together was dinner.

Today, 8 months on, she only ever eats dinner with us and occasionally lunch if we meet family at a restaurant. Dd has to choose the venue as her eating is limited. We sit down a minimum of twice a week as a family and at least once with me in addition to this as dh isn’t always able to be there. She eats with friends a fair amount, which she finds easier. I know that isn’t much. It’s been reduced by one day a week as we have just started to allow dd to eat dinner alone at the gym once a week. She likes going down there to study, she’s year 12. She’s really starting to prove herself on the eating front and I made the decision that forbidding her risked losing the ground we won. The ED coach although initially not happy that I let her one time agreed with my reasoning once I explained why I now decided to allow her again and to make it a regular thing.

@Curlyhairedassasin That is good news. I’m so pleased to read your dd is responding to treatment. Cake is brilliant.

I hope things are improving. When DD was that ill we needed outside intervention to get her back to a safe weight. No amount of tough love, or any other kind, on our part could have restarted feeding and she told us as much when she was in a better place.
unfortunately, until she became seriously underweight and at risk, we were left to try to turn it around on our own, which we just could not do. And during that time the illness became more deeply entrenched. If it is possible, I would be asking if she can stay in until meal plan is established, although I appreciate this may not be an option.

@Curlyhairedassasin I’m so happy to read your update, you’ve waited such a long time for this. I really hope your dd continues to improve.
@Shedqueenwe had a mixture of approaches depending on how he was feeling at the time, sometimes we needed to stand firm (tough love) and this is being eaten regardless and it takes as long as it takes and other times usually with fear foods so if his anxiety was high we were a version of Eva musby. I don’t think there is a right and wrong as each child/young person is different and it’s whatever works best at that time.
edited to add our child wanted to be well again and get back to having fun and not worrying about food but early on nothing mattered. When they’re so starved they can’t see how unwell they are.

I think I’m very lucky to have a group of strangers who listen to my rants and take time to respond. Thank you all . You have strengthened my resolve to stand up for her when she can’t make good choices.

She is sticking with the meal plan, helped by not having a choice because she’s an involuntary patient/ hates hospital/ has previous trauma from ng feeding or all three. She is brighter, unsurprisingly on 1500 calories for a few days. However we’ve said to her that she needs to become habituated to eating sufficient & regain some weight so there is a buffer for the future at the very least. She’s eaten her way out of hospital before so I’m wise to that.

It exhausting. Wishing you all a good weekend. I’m going to try to have two days of not worrying, visit her in hospital and do some gardening ahead of whatever next week brings.

Just catching up Curly that’s great your dd has turned a corner, I’m really pleased for you.

Re the tough love debate it is really hard, I had some firm boundaries but I definitely caved a few times to the ED as well. It is hard to get the balance of causing distress vs compassion right, I don’t think you can recover from an ED without there being some distress but knowing how far to push them is so hard.

@greydoorcomparison to gambling is really interesting and completely right, the ED loves a little win and will always try and push its luck.

in the end with my dd I went with the path of least resistance in some areas so let some snacks go but really pushed hard with fear foods and getting high fat, high calorie foods into her.

I think holding a firm boundary with them when they’re unwell is vital and I used to say to dd ‘I absolutely will not let you starve yourself, not on my watch’.

Dd now acknowledges and is grateful for the effort I went to to get her well, our relationship now is great and we get on well.

It would be the same if dd was an addict or alcoholic, there would be firm boundaries and rules to being at home and consequences when those rules are broken. It’s tough love but also a way of saving them when they are unable to save themselves.

I also looked for ways to show dd how much I loved her when we weren’t in a battle over food, so doing nice things for her, buying gifts, sending texts saying I knew how hard things are and that I loved her so much etc.
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I’m so pleased your dd is eating 1500 calories @Shedqueen. That makes such a difference even in a few days. I am so hoping you / she will be able to continue.

Like @Girliefriendlikespuppies says, I also do as much as I can to connect to my dd. Lots of loving texts, little gifts and talking to her lovingly and calmly as though she is a much younger than 16. It is hard to do all of this when you’re being so brutally spoken to and rejected. It felt very false at first to talk to her like she’s in primary school and I did have to be careful not to stray into the patronising territory. Dd was sarcastic and nasty about my change of tone at first and totally rejecting. I couldn’t get near her for quite a while. Then I was allowed to stroke her hair, eventually kiss her on the head. Now about 8 months in to this process and with a short relapse in Jan /Feb, we have just started to actually laugh together and have little mutual jokes. She wrote in my birthday card thanking me for everything I was doing, that she appreciated it even if she didn’t show it.

I’ve learned such a lot from this process as I think we all have. And dd has learned from the relapse as well. The relapse moved her forward into being able to see she how ill she actually was. I know for your dd it is different. With relapses, she’s (or rather the ED has) learned to game the system. But somewhere inside, your dd will have learned things as well. And I hope you will be able to build on that.

As for the addiction thing, when I was looking at therapy for my dd, one place I came across is an addiction centre, which also treats ED. The person I spoke to was clear that they consider what dd was going through to be a form of addiction.

Idk if you are still considering private therapy for your dd as you’ve talked about how she is no longer motivated to engage. I would recommend that if you are able, you look into it for yourself and your dh. I know your dd is now an adult and private services can engage with you when the NHS will not. The changes in dd have almost exclusively been made without dd having any input and on what we have said to the ED coach and the little dd has engaged. Dh and I have a one hour weekly zoom each with the ED coach (we can’t do it together as I’m streets ahead of him and he is only too happy to switch off). Dd refused to talk to her for months but is now engaging again - the coach is brilliant at slowly breaking down barriers. It’s only monthly as she’s so far away and dd couldn’t engage on zoom. The coach was a recommendation on Mumsnet as someone, with a lot of experience of working with people, who are neurodivergent, which is why we went with her - albeit dd has no ND diagnosis, she has traits.

Hello,
I posted on another thread, but it was suggested that I repost here. My son is nearly 24

My son has been referred to an eating disorder clinic as an inpatient. It is early in the referral stage (the clinician said it would take about a week for everything to be organised), and I am not sure that he will even go (he hates change of any kind).
The inpatient treatment would be to help him break the cycle of bingeing and purging/restriction overexercising, so it would not be a long admission.
I am desperate for my son to receive some help for bulimia nervosa, and, to be honest, I do not feel he is safe living at home with his current behaviours.
Has anyone any advice about how I can support my son over the next week? He is very entrenched in his behaviour, and he is awaiting assessment for neurodiversity, so making a change will be tremendously stressful for him.

He has an assessment on Monday.

Thanks