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…

Thanks for starting a new one @Mummyoflittledragon I'll be thinking of you today and hoping for good results.

@raspberrysins I can relate so much to how you feel in appointments. We've been 'stuck' for a while and like you, I've often thought they must think we're idiots! I think the idea of asking to see the dietician is a good one. We had a dietician join our appointments and it was really helpful. Although in our case we are struggling to get her to complete the meal plan. I know your DD has been pretty compliant. Maybe put the questions back on the team, ask them what more they think you should be doing? Her ability to face challenges on holiday is a real positive. I hope camping goes well.

@10yellowtulips I hope your first night was ok and the hospital turns things around for your DD. I'm kind of relieved that they've admitted you, I was quite worried about you both from your posts.

We had an appointment with the psychiatrist on our own yesterday and it was really good. I was still a bit unsure about him even after the MDT meeting where we had really positive interactions. But yesterday he seemed to really be listening and trying to find a way forward, he's asked us to try and break some of DD's rigidity around food and to try and find ways of making her feel in control. I think he senses that we've all become very wedded to the meal plan, even when that's not actually working. He asked some really insightful questions about DD and when we got back she was in a receptive mood so I was able to have a good chat about some of the things he brought up. So all in all, I feel pretty positive today and I'm going to hold on to that for as long as I can!

Thanks @Weightlossworried
I just posted on the other thread. Dd didn’t get into her first or second choice. School helped her find something at a really good university on ucas points and it’s more local. She could live there or commute. She came home saying she doesn’t want to go there. She can’t wait to get away from me. She’s been saying that for ages. And she is looking at courses at a university in her first choice city. Any old course. I’ve spoken to dh and we are both saying we won’t support her on that one.

Sorry @Mummyoflittledragon. Both for the fact she didn't get her choices and that it must be hurtful to hear that.

I think a lot of teenagers really relish the idea of "escaping" and becoming independent but our children have had us on their backs trying to get them to eat for so long.
We have had to take more control than the average parent so I guess that can amplify the urge to get away. All the same it must be worrying.
I wouldnt support any old course either... For a start it's a lot of money to spend on a subject you're not compelled to study.

@Mummyoflittledragon oh that sounds so hard I’m sorry she’s upset didn’t get her first choice. I’m a teacher and have been into work today and had many conversations around this. They have visualised their life going to that one place, and suddenly changing their vision to something else is virtually impossible.( Especially with any ND). I just say to them that sometimes not getting what you want turns out to be the best thing that could happen to you. She might end up meeting the love of her life or an amazing opportunity will come her way and she’ll see the path was right. Unfortunately they won’t understand any of this until later.

@Weightlossworried and thanks yes I feel we are in similar stuck places in some ways. We have actually been seeing the dietician r a few weeks now and did like him initially but now he is just jarring. Basically he wants us to take full control of all meals and serving. Which just won’t work with DD in any way. He must think I’m so weak. He is young and I feel doesn’t understand the concerns about ND. Taking full control won’t work and will result in disaster. Maybe I am naive in that. But my DD has to have some choice and some prior agreement. She is capable of preparing her breakfast and snacks in accordance with the plan. I think evening meals are what we cook for her and those have possibly been not big enough. Maybe taking a photo is a good idea actually I might try that!

I'm so sorry @Mummyoflittledragon

I hope she calms down with a bit of time and makes a sensible choice. I'm sure as pearl said on the other thread, she's taking all her upset and disappointment out on you. That doesn't make it less hurtful though.

That must be really frustrating @Raspberrysins if she wasn't such a low weight I'd say, do it his way and show him the consequences. Photos are a good idea though. If she's preparing the snack and it's the right amount does it matter that much? I thought the danger would be that she'd not prepare enough but if you can see that's not happening then does it matter? We do most of DD's snacks but when she does her own she gives herself the same amount we would.

Thanks for the new thread @Mummyoflittledragon

Thanks all. Sorry I can’t really focus on anything today.

Been a rollercoaster. Dd got an offer for the same course, miles away. Decided that’s the place she’s absolutely going. It’s difficult to get to from here btw. And then realised it’s far from the city centre, started looking at course content, accommodation options as well, but the main thing is location. I’d forgotten that… not her bag at all. As she was heading out just now, she beat me to it and said she’s decided against it because of the nightlife.

It looks like the local one now. Fingers crossed. Just she’s always said she will never go there. They have a partner university in France and many French links. It makes sense and has an excellent reputation for employability as well. A very good friend of hers is now going too as he missed his grades. They’d sort of loosely made plans to stay in the same halls at her first choice uni.

As for calming down, I went to the florist and got her a massive bunch of flowers with a card congratulating her on passing all her A levels. I was intending on getting that anyway, regardless of her results. Her best friend failed one of his unfortunately, so that will hopefully have a lot of meaning to her.

Gosh, no need to apologise @Mummyoflittledragon You support so many people on here. Hopefully we can return the support when you need it. I hope she appreciated the flowers and I really hope she chooses the local uni

@Mummyoflittledragon fingers crossed she goes for the local option, it sounds like that's by far the best option for her. It is really difficult when you don't get the results you hoped for.

@Raspberrysins many health professionals really don't seem to understand how ND impacts eating disorders. That said, the only thing that has worked for my autistic DD has been the complete and total removal of any control that has come from being sectioned. I don't think she could ever have allowed me to take that level of control at home, but that's what she needed. No idea what will happen when she's allowed out though.

@Weightlossworried really glad the psychiatrist appointment went well, that sounds really positive.

@10yellowtulips hope your first night went ok, I'm sure it was stressful but it's also a relief to have medical people there to keep an eye, I found it very anxiety -inducing when DD was at that level of weight, panicking about every small symptom and whether we should be going to a&e.

Thanks. She’s now confirmed the local one. She still wants to go to halls. That’s her choice as if things go wrong, she’s not far away. Not ideal of course. It’s really commutable and many people do that in year 1.

We are only giving her the parental top up contribution btw. Our finances have been decimated with the 5 years of private school, private tutors, her swanky lifestyle (which is her mask and to keep her going) and the ED coach on top. She’s been steaming about that, but she has a trust fund and she’s now accepted after much anger that we just can’t.

She is staunchly refusing to budget, eats out almost every day and knows her trust fund will all be swallowed up, plus almost 70k of debt by the end (that was budgeted based on a year at university, so there’s wiggle room to reduce for year 3 if she works), plus she will need to work a considerable amount to keep her lifestyle going, and pay that back as well.

Her argument for wanting to go further afield was that it would then seem worth sacrificing her trust fund to pay for the university accommodation. So we will see. We’ve explained it would be best to save her money, how she could budget and have a buffer to set her up post university, rather than coming home broke and finding a job from home. Because at that stage, she should be autonomous. And we don’t want to fund her from there.

All she does is accuse me of wanting her to stay at home. By golly it would be so much easier for her to not be here… Love her to bits. But she puts me through so much. And far more than I can ever write on here.

First 24h at hospital are now behind us. I’d say it’s been a good experience so far. The ED service send nurses 3 times a day for meal support.
Shes had some food at each meal which is really positive - not loads but way more than at home. They then made her have some ensure afterwards although at evening meal she refused. She’s also still managing to pace around the ward and the room.
overall I’m pleased and it’s gone better than I thought. I’m hoping it will continue.
im also finding it a bit easier than expected - they don’t want me to be there all the time so I’m getting some work done. I’ll probably speak to my boss about maybe doing 3 days worth of work in a week or something like that.

That all sounds positive @10YellowTulips You can breathe a sigh of relief knowing shes safe in the hospital and I assume they're monitoring BP/HR too which always made me feel reassured.

Yes they are monitoring her vitals multiple times a day and even at night. Although we’ve been lucky so far it’s never yet been dangerously low. Much to my DD’s disappointment as she thinks she must be “fat” if all her tests are fine.
how are things with you @CuppaTandBicky - when do you expect to hear what happens next? Are you still in hospital?

That's good they're normal. They may ease off on the NG tube unless she refuses full meals.

We aren't in hospital at the moment but will be back there soon unless there is a gain at her next appointment. It's not even a deterrent any more because it's almost like home for her there now it's so familiar!

@CuppaTandBicky I know what you mean about hospital being too easy. I do understand that normal sick wards are full of frightened poorly children, but we found the staff so kind my daughter enjoyed the company!

@10YellowTulips I’m really pleased to hear you’re being supported by the ED team in hospital. The dietician should visit too. Are you weighed Monday and Friday? It’s great to avoid the tube and to be eating more than home. I’m really glad you’re there and able to continue with some of normal life.

@Mummyoflittledragon what a few days you have had. I really hope things settle for you over the new few weeks. I’m so glad your daughter will be close to home. What a relief for you, but what a drama it has been!

@Raspberrysins I am so pleased yoh have been into work and you could help students. Are you planning on returning full time in September? I can’t believe how quick the holidays seem to have gone!

@Weightlossworried I really hope things are more settled now after the meetings you have had. My goodness it feels good when the feeling of doom isn’t constant!

I hope everyone can have a peaceful weekend and hopefully enjoy some rain. Thinking of everyone xxx

I posted recently about my 13-year-old who has recently been diagnosed with anorexia and had some really kind and helpful replies, so I hope nobody minds me posting again. Sorry I can't offer advice to anybody else who is posting as this is all so new to me but I hope you are all doing as well as you can be.

Since I posted last, she has had more bloods and as expected they were worse than the previous ones. CAMHS came out on Thursday to offer meal support but she refused to leave her room. The crisis team attended today at lunch (and will tomorrow) but the same thing happened.

The main problem is that she is absolutely adamant that she will only eat once a day, a small evening meal. Today she has refused breakfast, lunch and a snack so far. We are having fajitas tonight and I'm hoping she will manage a wrap and maybe some rice, but that will likely be it. It's the same every day.

I am following the home plan. At every meal I keep going back to her throughout the 40-minute meal window, every 5 - 10 minutes but I feel completely stuck because I don't know what else I'm actually supposed to do.

Hi I’m new here. My dd16 has been diagnosed with anorexia. She weighs 45kg and bmi is 16. This is all really scary but I am so so impressed with the nhs care we’ve had. She sees a paediatrician for other reasons and she did a referral on 7th August, we got a call from the eating disorders unit on 10th and have our first assessment on 17th. Dd denies she has an issue.

@Holly221288
My dd was exactly the same. It’s really common to just eat one meal and in the evening as we discussed on the other thread. My dd ate the same meal every day and it was easy to just increase it very slowly without her noticing.

Will your dd eat what is given to her? if she is, you make it as calorie dense as possible.

She needs plenty of fats (preferably animal) and protein as well as the carb. So fajita wraps with crème fraîche rather than sour cream, cook your meat and vegetables in butter. Full fat grated cheese. Salsa is low calorie, so try steer towards the other components etc. I used to cook the chicken in the salsa for wraps when dd was younger as she didn’t like spicy food and it gave the fajita flavour rather than giving her straight salsa. You could also seal the rice in butter for a couple of minutes to add calories. Any trick possible to make it nutrient rich…

As for eating earlier, you can only keep offering at the moment. And remember the rules around not eating for 24 hours or less than 500 calories in a day. This is a trip to A&E.

Hi @makemineadecaf I’m pleased you’ve got an assessment so quickly. It is really really common not to admit to having an issue. My dd still isn’t almost 3 years on. You’re not going to be able to force your dd to do so I’m afraid.

How much is your dd eating in a day?

And I would just like to reiterate what I’ve just said to Holly about getting your dd to A&E.

Hi @makemineadecaf welcome, and sorry you've had to join us. Its great news that you're feeling well supported by the NHS. Denial is common in sufferers, and tricky to manage, as treatment ideally is for family to help the young person eat regularly to re- nourish

Hi @Holly221288 keep on posting we've all been newbies and learned from previous wise parents

Its so hard when they wont eat. I found the Eva musby bungee jumping video really helpful. And the wording she and others suggest, reassuring that we know what the sufferer needs, its safe and ok to eat it, and remaining calm and encouraging
Plus distraction, puzzles are still common during meals here and they and podcasts were essential in the early days

Take care, its a hard place to find yourself but getting help is the first and major step

For @makemineadecaf and @Holly221288

https://www.mumsnet.com/talk/eatingdisorders/5566004-eating-disorders-resource-thread-for-parents-carers-and-adults?reply=154120459

This is a resource thread I just started that anyone can add to if they have resources to add. I see Lurky mentioned Eva Musby on here, which some people have found really useful. Different techniques different kids. Some families have thrived with it. And it is the easiest technique, so good to try as a first line.

@Mummyoflittledragon that is definitely my next step, I am writing a shopping list right now so will focus on increasing the calories. It sounds like you are a much better cook than me though but I will do my best. Could I ask did your DD manage to maintain or even put weight on with just the one meal? CAMHS have said 48 hours for not eating, is that not correct? Thank you again for replying

@LurkyLurkyLou thank you for your kindness. I will re-watch the video and also try to increase my phrases as I feel stuck saying the same things. I am trying to distract her but she is very reluctant to leave her room at the moment unless it's late at night when she knows there is no threat of food. Will definitely try a puzzle though

Thank you so much

Dd is getting her gcse results on Thursday which is definitely not helping with the calories right now. She’s a nervous wreck. Hopefully once that’s all done she’ll be more willing and able to up the intake.

@10YellowTulips
I’m really pleased to hear that your dd feels at ease in hospital. It can be a difficult place. I hope that she continues to manage to meet the eating goals they set her. I also hope you get the 3 day approval at work.

@Raspberrysins
You're a teacher fgs. Of course you know how to talk to kids / teens. I know someone, who teaches ill ED kids in hospital school and still has been unable with her dd. Please don’t let this get you down. You said the guy is young. And blissfully unaware by the sound of it.

@StressedANmum @CuppaTandBicky
It’s nice to see you both talking, but not necessarily directly about your situations. I’m hoping things are feeling a little lighter even if the situation is still incredibly difficult.

And I do appreciate what you’re saying Cuppa about hospital. On the flip side, your dd is receptive and able to recover in there if she needs to go back. That is also a blessing.

@Holly221288
I am really not a great cook. 😂 but thanks. I’ll take the compliment. Dd has always been extremely fussy. I’m now told it’s very ARFID like. (Avoidant restrictive food intake disorder) so we have never had adventurous meals. Just stuff dd would eat pre ED.

Gaining weight longer term on one meal is extremely unlikely even if you’re managing to make those meals over 1000 calories and your dd is doing little to no walking. As in staying at home and not compulsive exercising. And different people need different intakes. She may regain a little. And some of that will be increased fluids as well as food. Sufferers often drink very little, even nothing.

Eating like this, my dd lost a kilo a week over the 7 weeks. It then slowed as I had started using the methods described to increase the calories. She lost 1 kg in the following month. She regained 800g 2 weeks later, but by then I had managed to get her to eat 2 meals some days. From then on, she refused weigh ins. But did start eating more after a gargantuan effort.

As for the 24 hours, I am citing the guidance on MEED checklist - medical emergency for eating disorders. They’re saying 48 as it becomes red once it’s over 24 hours of eating, so they’re saying it from the perspective of the 24-48 hour window. Perhaps it depends on the individual. Definitely don’t leave it longer than 48 hours. You know how long it takes to be seen in hospital, so if you leave home after 48, it could be a lot more by then. And it would be beneficial to give your dd the 24 hour deadline. Ie ‘you haven’t had anything today, if that continues, we will need to take you straight to hospital first thing in the morning’.

For me, it would also depends on a starting point. So for example, I would not leave more than 24 hours if it was @makemineadecaf as that is a very low weight. And it would also depend upon the overall weight loss and the speed of loss. The greater the weight loss and the faster the loss, the more serious the situation. I hope that makes sense.

@makemineadecaf
Good luck for Thursday! I hope your dd does manage more once she has her results.

Sorry this part is really hard and stressful. After a while you kind of become almost numb to it in a way (not sure if that makes anyone feel any better but it's true!)

The only trouble with only eating once a day is that the blood sugar will drop, the brain goes into starvation mode and I always find the longer she goes without food, the harder it is to then persuade her to eat. That said I know it's easier at the beginning just to go with their wishes if it means they'll eat something, anything.

How I do it is
Breakfast: me and her sister sit with her in her room while she eats it and we put something on her TV in her room to distract us.

Lunch: she comes down and sits at the table with me and eats OR sits watching telly with me and eats on a tray.

Dinner: sits at table and eats with me supervising..

Snacks are supervised but as long as she has it I don't mind where or how.

We don't eat together as a family, she would hate that and it'd be too much pressure.

How the team would like us to do it would be sat at table for all three meals with the family, all of us eating, at set times. She would be in short sleeves, hair tied up and she would probably have the same meal as us.

We don't do that because that's just not how we have ever done things! The rule we do enforce is no toilet for 30 mins after and she must stay downstairs if I'm downstairs (or up if I'm up)

I say all this as advice but we are still facing readmission so it's not necessarily working as far as weight gain and changing thoughts around weight, but she is eating regularly and her obs are now normal.

@makemineadecaf Welcome. I've also been impressed by our NHS care. Our team are amazing and have literally saved my daughter's life and will not give up on her. Good luck with your assessment. Beware it can be quite intense and they were very blunt about risk of death etc with us all. It was quite a shock but we all needed that to take it seriously and put everything we have into beating it.

My daughter still refuses to believe she has a problem even though she has had a team of experts seeing her twice a week and been in hospital most of the last 2-3 months with an NG tube. It's such a bizarre illness.