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

[Curlyhairedassasin]

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

Everything girlie said exactly. It’s really hard and they don’t like it but you need to fight it. Find the thing they want and tell them if they don’t eat they cannot do that thing. We told Dd she would have to resit a year at school and she could not sit her GCSE’s or go to the festival she is desperate to go to. After hearing that from the psychiatrist she cooperated with the magic plate FBT and has done every since (three weeks now).

It worked for us I hope it does for you as well xx

@PermanentlyExhaustedPigeon80
I think it must be very confusing as you’re getting such differing advice. I’d like to just clarify things as I’m sure right now you’re pretty overwhelmed.

The Eva Musby method, which worked for Girlie and is working thus far for Thea (they’ve only been doing it for maybe 3 weeks and her dd seems to be aware of her anorexia and NT) is all about the parent taking complete control. ‘I love you and I know exactly what you need darling’, type approach. It takes an absolute rod of steel to follow it through, especially with a neuro divergent child. No deviations. No capitulation to the ED, ever. Girlie once said something along the lines that if your dc doesn’t dislike you today, you haven’t worked hard enough. That shows amazing resilience and her views are much respected on here.

The New Maudsley method is a lot softer and coaxes the sufferer to eat with love and care. It uses gentle language to nudge and nurture, to change thought processes and circumvent the ED. It also requires a consistent approach from both parents. It is more complicated in the beginning and takes a shift in thinking. To do this work effectively, it is far easier once you’ve completed the 5 part workshop. I posted some links upthread. This is the page on Jenny Langley. Her email address is in this page. She also offers workshops on how to work with people with autism. The workshop is more beneficial if you’ve already completed the 5 part workshop. https://newmaudsleycarers-kent.co.uk/about-us/

We are working with an eating disorder coach. The way she gets us to work with dd is more based on New Maudsley and more forceful at times. My dd has a certain level of demand avoidance, likely PDA (pathological demand avoidance). The coach explained that the way we had tried to use the Eva Musby techniques when dd was so very ill pushed her further into the ED. With dd eating more now, she is a little more flexible and some of the work we do is on the lines of Eva Musby. But still we work with modified FBT as dd just cannot eat with us for every meal. So it’s dinner together now (when she’s home) and dd eats evening snack whilst dh is in the kitchen with her. But not sitting eating together.

I can see you’ve really been through the mill already and that your dd shuts down and has a history of self harm and anxiety. I imagine you’ve been working with the more soft, nurturing approach and my gut feeling is that you don’t currently have the resources to go at this hammer and tongs. If this is the case, I would look towards New Maudsley. You also mentioned that your marriage is suffering as is your youngest. It’s very common for marriages to suffer. The ED coach is also giving us some counselling for this alongside the ED work. So please be kind to yourself and don’t beat yourself up if thus far things haven’t worked. Today, like every day, is a new day.

Shanghai suggested getting a dietician on board if you can afford it. I agree. Or someone like dd’s ED coach. CAMHS are notoriously slow and unfortunately it’s not uncommon for it to take an inordinate length of time for diagnosis. My dd in fact was never diagnosed despite being under CAMHS for several months. Dd refused to engage in the beginning and was totally confused as to why she was there (she had anasognosia, ie was totally unaware that she was even ill). The psychiatrist couldn’t decide if it was anxiety based, ARFID, anorexia or disordered eating. We were offered even less help than you. I didn’t wait for diagnosis and got the ED coach on board. Then when dd was eating better, dd went back to CAMHS with the sole aim of pulling the wool over the psychiatrist’s eyes and it worked. She was signed off. We are not alone with this experience.

The ED coach is very much of the opinion that it doesn’t matter what the root cause of the lack of eating is, we just needed to get dd to eat by whatever means and however, wherever, which is what I said to you about allowing your dd to eat in bed.

We found ‘many parenting rules turned on its head. Vegetables weren’t helpful it’s all about carbs and dairy Dd would try to just eat veg. Watching reels about a spa we were going to together distracted Dd so she ate a pretty good meal. So the no screens at table rule out the window too.

Pigeon, there is lots of good advice here. Try to find what works for your family. As everyone has said, the main aim is to get her eating regularly again. And distraction is your best bet. Watch reels, play board games, make bead bracelets to take her mind off the intrusive thoughts.
i would recommend watching Dr Laura Hill’s Ted Talk: Eating Disorders from the inside out. It gives you a good insight into the illness.

Also push back on their mad discussions “that’s eating disorder talk we dont do that”.

Told Dd that I pretty much trust her on everything but not anything food related as her thinking on that is temporarily wrong. She is 16 though and NT so the more obvious Musby approach is working for her but obviously this is very complex if there are other issues.

This sort of talk unfortunately only works if the sufferer understands and moreover accepts they have an eating disorder. As I said in my last post, my dd had anasognosia for a long time. This is not uncommon with people, who are severely mentally unwell. She didn’t believe she needed to eat to live.

If they don’t get it, this talk will actually make everything worse. All I got from speaking like that with dd was total meltdown and refusal to eat. More than year on, I still am unable to be quite this direct as she still isn’t yet ready to participate in her own recovery.

@Mummyoflittledragon we had exactly the same. It triggered massive reactions for us too.

I think, one can only try to figure out what works for their child. It appears to be a lot more complex if the child is ND and presents as demand avoidant (as DD).

@PermanentlyExhaustedPigeon80 Hope they today goes well and the take you seriously.

Definitely. Here’s the link. https://www.youtube.com/watch?si=sypK2KprJurodh78&embeds_referring_euri=https%3A%2F%2Fwww.google.com%2F&source_ve_path=Mjg2NjQsMTY0NTA2&v=UEysOExcwrE&feature=youtu.be

Distraction is good. Dd wouldn’t do any kind of crafting or games as she was so anti me in the beginning but others on here have said it’s been fantastic. I have found rather than sitting as a family and chatting, when I’m absolutely bushed, it’s easier to sit in a row at the breakfast bar and watch tv.

I know you had the same reaction @Curlyhairedassasin which is why it’s so great to hear how much your dd has come on.

I’m also rooting for you @PermanentlyExhaustedPigeon80

How have things been the last few days @Shedqueen I have been thinking about you and wondering how things are going.

@Curlyhairedassasin i keep meaning to say how pleased I am to read your latest updates. You have been amazing dealing with two DDs with complex needs and work and schools. I am so happy that things are turning around for your DD.

@Shanghai101 Thank you. I was busy last week complaining left right and centre about the lack of educational provision and no final EHCP. Seems some movement now too. The LA approached the PRU for a permanent placement with the option to do 5-6 GCSEs which would be enough for us. Just need to get this formalised now. Been a mad year. Hopefully, DD can keep the eating up. I still have no idea what caused this radical shift but I take it.

That’s good news about the PRU @Curlyhairedassasin

we’re just about holding on after three days at home since discharge. Every meal is a struggle. No sign of discussed meal support. She has discussed a target weight with her consultant but struggles with the idea of gaining anything, even though the target would be equivalent to a bmi of 16 which seems too low to me. I can’t see this time working out either and I don’t think the medical team think so either.

I have helped her apply for FE College after two years out of education but it feels as though I’m going through the motions as she won’t be well enough. I’ve had some desperate times since she’s been ill. I don’t know how much more I can bear.

Thanks all for your lovely words of encouragement and support - it really helps to know you're all thinking about us. It can feel very lonely at times being in the middle of all this can't it? @Mummyoflittledragon I really appreciated your clear explanation as we have definitely been feeling very confused by all the different advice. The New Maudsley method does sound like it might suit us better, and I'll do some research into local ED coaches too.

The appointment this morning was hard. The Case Worker was a Mental Health Nurse, which was good, and seemed really nice / knowledgeable. She did her medical checks first and nearly sent her to A&E because her blood pressure was very low when sitting, and shot up when she stood up. Plus she's been having dizzy spells (last night and this morning) and frankly looked pretty terrible. She decided not to send us in the end, but gave us a firm warning that if we couldn't get her to eat and the dizziness continued, we should take her ourselves. A lot of the meeting was introductory, so we didn't get into the big questions frustratingly, but I shared all my notes on her eating and behaviours and pushed for more support. The Nurse agreed to expedite her bloods, said 3 meals a day was non-negotiable (but not to worry about snacks for now), and told us to keep her off school for the rest of the week and concentrate on rest and meals.

She made an appointment for next Thursday and said that if DD presents in the same state at that session she'll be recommending hospital admission. Her weight was okay (110% apparently) but she said that the other symptoms / behaviours were significant enough to raise red flags.

7 days feels like a really long time to wait for another check in, but I have her number if I have concerns so can ring anytime. We're now home and I've been trying to get DD to eat a sandwich for an hour (in front of her favourite TV programme as a distraction). She insisted on no butter or she wouldn't even allow it in front of her, and has eaten the Quorn chicken (2 slices) out of the bread but nothing else. Other than that, she's just had a frozen berry smoothie and some water all day. She says she still feels dizzy.

I've been signed off work sick for the rest of the week thank goodness, so can concentrate on trying to get DD to follow the 3 meals advice. I don't rate my chances with her current mood though. It's like talking to a brick wall - she didn't seem to register any of the consequences the MH Nurse went through with her. She just keeps saying 'I can't'. It's heart-breaking.

I am so sorry to hear that things are still so difficult @Shedqueen. I hope you are able to access some support / therapy for yourself.

That is really good news @Curlyhairedassasin I hope your dd will be happy there now.

Oh god, her Case Worker just rang to say she's now spoken to the medical team and they want us to bring DD into A&E to get checked over. Can't believe this is happening. Even when I told DD that we had to go to hospital she just said 'that sucks', but it didn't seem to be enough of an incentive to eat anything else😞

@PermanentlyExhaustedPigeon80 The MH nurse seems really on the ball. I’m glad they’re taking this so seriously. I hope you can get the support you dd needs.

Let me know if you want the details of the ED coach we are using. She was a recommendation from Mumsnet. The reason I went with her is because she has a lot of experience with people, who are ND. She is trained as a MH nurse and worked for 20 years at the priory in ED. She isn’t local to us at all btw. We travelled in the beginning and take dd there once a month… we are hoping to switch to zoom for dd soon. But dd has to be ready.

Yes please to the details of the ED coach @Mummyoflittledragon - very willing to travel if needed. DD isn't great with online conversations (she struggles enough in person) so would really need in-person sessions.

@PermanentlyExhaustedPigeon80 its really scary for you all right now but it sounds like you have a very good MH nurse who isn’t taking any chances. Things can deteriorate very quickly for young people with an eating disorder who are heavily restricting.
A&E may send you home and if they do, but you continue to be concerned or she gets worse than you should not hesitate to take her back.

I’ve pasted below the link for Jenny Langley‘s website. She has been working in this area for 20 years and developed this program for carers to help their loved ones with an ED. She has worked closely with Janet Treasure who developed the new Maudsley approach to caring for a loved one with an earring disorder. It is a more person centred approach and if you find that FBT is not working then you should make contact with Jenny Langley and she may be able to help you adapt it for your family.

https://newmaudsleycarers-kent.co.uk/

I hope all goes well in A&E and your daughter gets the help she needs but please do keep asking here as the advice is good and I wish I had been here at this stage in my daughter’s illness. Different approaches work for different families and you keep trying until you find the one that will work for you.

Hi all, I've been lurking and reading for a few weeks. My DD is 14 and was diagnosed on Monday with Anorexia. We noticed she had been picky with food for a while but she then started totally restricting her intake in the last month and lost a lot of weight. CAMHS have been really good so far and DD seemed totally on board with the first food plan they gave her. Because her bloods were good they want her to increase the amount of food now and she is now freaking out. Any suggestion on how to help? I've said the quicker she increases the amount she eats the quicker she will be back at school but that isn't hitting right tonight.

You’ll have to expect anger and tears every day, but as you know, it’s essential she starts to eat properly. Our experience of family based treatment was very difficult and DD ended up going to a day centre to start her eating again. Rely on all the sources out there (as mentioned by others on the thread) and don’t be afraid to demand more help. A&E refused to treat DD, leaving her critically ill at one point. I’ve had to stand my ground countless times until I was listened to. There’s a serious lack of funding for mental health services.

@littlemissy12345can you add calories rather than portion sizes? My dd found a large portion much more difficult than condensed calories iykwim. I added butter and double cream to everything so for example dds porridge portion looked the same but had more than doubled the calorie content because I made it with double cream rather than milk.

@PermanentlyExhaustedPigeon80 I hope you’re okay, it’s good that your dd is getting checked over. Ideally they’ll admit her and start a feeding plan in hospital. These early days are the scariest and most stressful, thinking of you.

@PermanentlyExhaustedPigeon80
I have sent you a PM.

@littlemissy12345
How were things last night? The main thing from the panic she felt last night is to ensure your dd doesn’t slip backwards from the current meal plan and build from there as I’m sure you’re aware.

As for increasing, I have not been able to do this with my dd being consciously aware unless imposed on her, which has caused some quite strong reactions. In the main I have done it gradually. She was eating the same thing every day so it was easy to increase by imperceptible amounts. She now eats 2 different meals at home and I have been able to more than double protein quantities from the starting point.

What sort of things is your dd eating? Is this easy to do? For example, I learned with my dd an apple is an apple. The size doesn’t matter. So I now buy the extra large ones. A slice of cheese (it has to be pre-sliced) is a slice of cheese etc.

When did you see CAMHS? I would give your dd a day or 2 to calm down from this and come back to it. If I am being more forceful, I have said to dd is ‘this is the last day you're going to be able to eat like this. Tomorrow will be different.’ I have had a certain amount of success with this albeit we’ve had massive meltdowns in some cases. And I’ve needed dh there when implementing changes such as getting a relapse under control to keep dd safe as she tends to stomp out of the house any weather any time day or night.

If you want to be more gentle in the approach I would try some New Maudsley techniques, you could say something like. ‘I can see you’re working really hard at eating everything that’s been asked of you and you’ve done that because you want to be well and because you want to be able to do x activity and because you want to be able to meet up with your friends. I am here with you and I love you so very much. If you can just finish eating that piece of food / take 3 more mouthfuls / similar and we can do x activity.’ With any complaint about it listen and empathise.

Dd would scoff at some of the stuff I’ve said. The because because because bit would work. However, I’d have to modify it to something to replace the word ‘eating’ for ‘doing’. The ‘I’m here with you’ probably wouldn’t. She gets really sarcastic but that’s because she’s not quite ready to participate in her recovery. But it’s worth a shot as your dd sounds a lot more cooperative. I have learned to speak to dd as though she’s a much younger child than 16. When she has left too much uneaten cheese (she only eats it grated), I point to it and say ‘can you just eat that, that and that?’ This is enough for her to comply these days. I also can do things like empathise with dd to a degree, ‘Sweetie I can see it’s hard. I love you very much’.

You could also ask your dd at a separate time what is it about the new meal plan that she finds upsetting. She will probably say to put on weight. Idk how old she is, however, you can explain why it’s important that the body gets sufficient nutrition needs to be healthy. That the body needs a layer of fat around each of the organs to function correctly and keep you warm. Or that eating carbohydrates, protein and fat will help her to do x exercise more effectively. Or if she’s older and into boys, that boys like boobs and bums. These aren’t conversations to have around meal times btw.

Thanks for all the support @Shanghai101, @Mummyoflittledragon and @Girliefriendlikespuppies

Sorry to hear we're in similar situations @littlemissy12345 - how is your DD today? We also struggled when DD went up from one meal plan to another, but still very early days for us so no great advice to pass on - just solidarity and sympathy, because it's just so incredibly hard.

DD was admitted last night, and we're now on a ward for 'a few days'. Not quite sure what that means, but can't imagine we'll be out before the Bank Holiday. She hardly had anything to eat yesterday and was in a real state, but she seems to have realised she needs to make an effort today and has so far had her breakfast and lunch. This is a massive relief, and a weight off our shoulders as for the time being the medics are telling her she needs to eat, rather than us.

Does anyone have experience of this kind of admission, and what we should expect to happen? She's on a general ward rather than an ED specific ward. We've been seen by the Paediatrican, who has said she's going to have bloods each day, 4-hourly heart rate and blood pressure, and the ED team / dietician should be round to see her later to make a plan.

It's scary to be here, but in some ways I feel much better because it's out of our hands for a while. So far, the thing she is most annoyed about is that she has to be pushed around in a wheelchair, even to go to the loo! She thinks everyone is making a massive fuss and she's actually okay, which is a bit of a worry, as not sure it's completely sunk in that she is really quite unwell.

@PermanentlyExhaustedPigeon80 I don’t have experience of admittance. Several people on this thread do. The op, Curly’s dd was admitted in March. She was on a general ward. From what I’ve read on here and learned, it isn’t uncommon to go on a general ward first. I imagine as space is limited in ED units. It’s good your dd is cooperating. It sounds as if she’s in good hands Bless her. ❤️ I hope you can breathe a little sigh of relief before you regroup.

Like every mum here, you’ve done your absolute best.

Edit to add: my dd was exactly the same. She thought I was making a massive fuss about nothing. At the time she was very mentally unwell.

@PermanentlyExhaustedPigeon80

We had 2 admissions to a general paediatric ward (never to an ED unit). First time 4 weeks, second time 6 weeks.

In our case, they tried to establish eating again but setting up a meal plan with increments. First time DD cooperated and she was allowed home once she was eating the 'final' meal plan for a few days and her obs were ok. Second time DD refused the meal plan and an NG tube was fitted. They still offer meals orally but any orally refused meal was then fed as shake via NG tube. DD eventually ate all meals orally and was discharged.

I would be very surprised if you are out in a few days esp if DD is not eating the plan. I would get prepared for a longer stay. Depending how things go, they sometime refer on to ED units but with the shortage of beds, the threshold is really high.

DD was on bestest too and too and we had the wheelchair also for everything (including loo). It's really hard but you are at the best place right now. Her cure is food, and if she doesn't it her meals, the hospital has alternative means. There may be push back. Some days are easier than others. Just hang in there.