Teen Eating Disorders Thread 7

[Lottsbiffandsmudge]

We have managed to fill the previous Thread here https://www.mumsnet.com/talk/eating_disorders/4471980-Teen-Eating-Disorders-Thread-6?page=40

So I thought I would start a new one.

Everyone supporting a young person with and ED is welcome here for advice (non professional but lived experience) and support.

Hoping everyone can find us...

At dds first appointment they took a detailed history, took dds obs (which were terrible) and told us to start FBT immediately. Dd was hysterical as was convinced they would say she was fine and to crack on with what she was doing. She was also told to stop all exercise.

I wasn't given any guidance on FBT other than being told to offer 3 meals and 3 snacks a day and to be calm and patient 🙄

Tbh everything useful i learnt from here, Eva Musby or the FB group.

Dd was given fortnightly appointments with a support nurse and for obs.

I guess this is why I'm freaking out because we were doing 3x3 and it's all fallen apart

I just can't see how it will work if they give us a meal plan and send us home when she's refusing solid food

Maybe I need to keep the faith they will give us tailored advice based on her situation

@littlepickle I'm sending strength and empathy. We're in a very similar place. We've just been moved up a meal plan as she was still losing weight. She's freaking out completely and not talking to us again. I have no idea how I'm supposed to get her to eat bigger portions tomorrow 😭 The only thing I can say is that I make them (the ED team) the baddies - I say "if you don't stick to the meal plan, they won't let you go to school". - which is her only respite from me at the moment, so she wants to stay there. Trouble is, tomorrow is an inset day and I'm pretty sure she'll cancel her plans (movie at a friends) now she's so stressed again.

A big problem I have is that she holds onto a bad meal and hates me for it. I wish she could draw a line under it and move on. I suppose that's too much to ask, but I'm fed up of being the enemy. I want her to see me as on her side.

We aren't having a great day either here, my dd has been doing the meal plan well but with the odd lapse, and her weight is also down. I have worried she is in hypermetabolism as this has been going on a while, I don't know if we can get in the calories needed at home, if she can't, she'll go back in for a short while to hospital. Trouble is that once they get really far down the path, even good eating doesn't cut it necessarily. @LittlePickleHead I would be hoping that at the appointment they will do a proper assessment of what type of eating disorder your dd has at the very least before recommending an approach. One of the difficulties we have had is my dd doesn't have classic anorexia and so refeeding tends to trigger other issues badly, plus she has pre-existing psychiatric issues. It make it really complex to deal with as the usual home meal plans just don't seem to deliver for a variety of reasons.

Hospital was the kickstart to DD’s recovery journey - she’s 104% wfh now, eats all foods and in reasonably good quantity. Thought I had failed when she was admitted to hospital 68% wfh, but there the ED assistant was strict and showed us and DD how we take control of meal times. DD hated NG tube feeding, she hates the hospital and the staff, that’s a motivation in itself. Sure her eating is now mechanical and still supervised and the hospital admission was one of the worst times of my life, DD hooked up to heart monitors but she is a different girl now.

Our experience is that if feeding at home is not working don’t wait until your DD is very physically ill - we wish DD had been admitted to hospital earlier and we were pushing but there were no beds so DD deteriorated at home until I took her to A&E.

It's so bloody scary. I can't cope with the idea of hospital. She was skipping around happily in the summer holidays - this has all happened so quickly and the deterioration is acute. It's terrifying.

@LittlePickleHead at our first appointment as @Girliefriendlikespuppies said they took a detailed history, they spoke to my D independent and also to me independently then I spoke with the dietician to come up with a plan using foods I knew she liked then they told us rules such as not exercising or walking the dog, no school, no flying etc and my D burst into tears and ran out of the building leaving me crying with the dietician while the psychiatrist and psychologist chased after her!

after that it has been weekly appointments with the psychologist, and a 3 monthly review from the psychiatrist about meds and then we see the nurse to do obs depending on her current state so ranging from 3 times a week to once every 2. However she doesn’t see the psychologist every week anymore as she hates it and tbh it achieves nothing really however the dietician has been a massive help after much conflict unusually she worked with D and comprised a lot and they work together and give D autonomy and control which she thrives off ( think due to autism) I am very grateful that she respects and trust the dietician

It is terrifying @SwattyPie and I know its a double edged sword having posters on the thread saying that hospital helped with progress and hopefully onto recovery. On the one hand we say it as a hopeful branch of a change from the isolating, all encompassing nightmare of supporting by yourself at home and yet I can still recall the way my world turned upside down when we got the news at DD's first CAMHS appt that they were admitting her to hospital.

I wrote a blog about our first 90 days and every now and then I re-read it - partly because (like Covid which was synchronous with our journey into anorexia) the intensity of it all feels quite surreal. That is in no way to down play it - rather the opposite, it is a world that others outside it can't really comprehend - its like a glass box has been placed above and around you and your family. Occasionally a door opens into the box and a well meaning CAMHS person trots in. But for the most part its like a reverse Truman Show where you're living/surviving a life that no-one else sees despite the glass around you.

I've shared that blog again here - but with the knowledge that a blog I would write today would still be full of anxiety and (my oft repeated analogy) many spins on the snakes and ladders board of eating disorders but 2 1/2 years on we're not in a fully enclosed glass box and sometimes when the door opens to hospital it is part of the way in which you break down the box...

anunwelcomejourneywithanorexia.medium.com/to-quote-the-fresh-prince-of-bel-air-fb3fcb7d39ba

@LittlePickleHead sorry I forgot to mention I would make sure you tell the truth and lay it down hard because my D would lie or play down things and she didn’t open up about how she felt so despite being very underweight and bad obs they thought she definitely didn’t have anorexia and at best disordered eating they believe when D said she just wasn’t hungry that’s why she didn’t eat

@myrtleWilson that is so beautifully written. And it really helps to read. I keep describing my world as having been blown apart but I don't think anyone without first hand experience can understand. I can't believe how happy I was just a few months ago. And now I'm signed off work, on meds, seeing a counsellor, given up all hobbies and social activities and struggling like mad. My poor husband and other DD. And my poor AN DD too. I just wish I was stronger. But also the longevity of it all is totally overwhelming.

@D1ANA22 I agree with you hospital can be good to restart things, my DD is like yours and really hates it and finds the idea of feeding tubes awful so there's a motivation there. She has been in recently and they discharged her perhaps a tad too early, so readmission has been on the cards not because she isn't trying, she really is, but the sheer quantity of calories needed plus some purging means there is not the corresponding weight gain. She is disappointed as am I for her but we both accept that hospital may be the place due to that. She goes on a children's ward even though she's 17, which can be traumatic for different reasons. I am more fatalistic these days and sometimes shared care, and thus shared responsibility, can bring a bit of respite. Every case is different, I wish it hadn't come to this, but I'm proud of what she's achieved so far, even if we haven't cracked it yet. Your story is very inspiring even if it feels like a long journey.

@myrtleWilson I agree about how beautifully you write and how much your blog resonates with me. It does offer comfort to know you are in a better place now

@SwattyPie I think we are at similar stages and going through similar ordeals. This thread is a lifeline at the moment, I hope we can continue to support each other and we start to see chinks of hope soon

I think at the start of the journey it's normal to feel completely overwhelmed and there's lots of things I wish I'd known at the start but you are thrown in the deep end with anorexia and expected not only to swim but to keep your child afloat as well!!

What I would say is don't think too far into the future, it's easy to catastrophise and that leads to more anxiety, just take one day at a time. Tell yourself you can do this, believe that you can get your child to eat, be stubborn and determined!! If you don't believe they'll eat then that's no chance your child will believe they can.

Take one meal and one snack at a time. Use every arsenal available to you to get that meal and that snack done. Use leverage, bribery, distraction, talking nonsense, putting the telly on, hand feeding them - whatever works for you. The important thing is the food goes in and stays in.

Ultimately if the food doesn't go in don't be afraid to plate the food up, bundle them into the car and head to a&e. The hope would still be they'd eat on the way there but if not at least they'll get a medical once over and it will highlight to services that you're struggling.

Make the rest of the time as comfy as possible, dd was always cold at the beginning so I got her a heated blanket, thick socks, the heating was on, thermal vests etc.

I encouraged crafts I knew she liked, we played board games, occasionally she'd let me paint her nails or do a face pack, we watched a lot telly.

Definitely separate the ED from your child, if your child is screaming they hate you and wish you were dead then see this as a good thing. The ED is threatened and kicking off - good it should feel threatened!!!

Know that deep down your child is absolutely terrified and needs you more than ever before. Wait until they have calmed down and tell them you're sorry this is so hard and that you love them very much (Anorexia hates that you love them no matter what bile it spews at you!!)

I feel like a bit of an ED veteran these days as it's soon going to be 3 years since dd was diagnosed!! We're still not ED free sadly but dd is a good weight, eats a decent amount, goes to college, has friends and a pt job so life is okay and I have hope that one day she will naturally just move on from it.

This is going to sound really trivial, but one recovered anorexic came onto this board to say how much she appreciated her mother buying her fluffy socks. I of course went straight online to buy lots of different fluffy socks. Obviously they're not a panacea for ED but they were a useful metaphor for me in maintaining the love and the patience in the face of someone who kept rejecting that. I tried (and often failed) to show her the sort of care that she was failing to give herself.

We're now two years on from when I first rang the GP. Myrtle's right in that you have to remind yourself sometimes of the screaming intensity of the early days and which she so beautifully articulates. Now that she is so much better I sometimes wonder if I've exaggerated it, that it wasn't that bad. And then I look at the letters from the hospital and remember every bloody meal, and it was terrible. And so isolating.

At the beginning you have a weird adrenalin. The worst, for us, was about 10 months in when she weighed less than she did when we started (and was about 4cm taller). But it was also the point where her true recovery began.

A&E was always really unhelpful for us. I don't know if we were unlucky. I remember longing for the NGT as it seemed easier than this constant battle. Weirdly I think DD reading Difficult Women by Helen Lewis was another turning point - the descriptions of force feeding suffragettes really terrified her!

Thank you all for sharing your experiences. They really do help x

Similar here. The other day I found a bag in dd’s room full of basically every lunch I’d given her to take to college since half term. Her room stank. She hasn’t been eating her breakfast either most of the time. I’m at a loss tbh.

sorry to ask again but has anyone heard or had any experience of RO-DBT

I don't love other than that some people on the fb page have mentioned it, I think it works quite well with autism and ED combination teens.

Sorry @love no idea here. Hope everyone is ok tonight. Tough week here. Again.

Hi everyone. Hope you're all OK (as OK as you can be).

Lovewinter it's not something I've heard of. I'll have to have a Google.

Dd has been displaying some worrying behaviours the last few days. Asking to cook for herself and wanting to go shopping, which is what she was doing when she was diagnosed and we worked hard to stop. Also hanging around and asking me if I've weighed everything which she knows I won't engage with. Just little things really and nothing we've not overcome before, but it's worrying and also frustrating to be going backwards.

I think it's linked to her gaining. Even though she's blind weighed I think she could be noticing a change in her body.

She's doing so well and it's hard to keep saying no to her strives at independence, especially as shes nearly 17 and going to college and seeing friends, so outwardly her life is looking quite normal.

How on earth do you keep convincing them they're ill and still need food decisions made for them, when they think they're better? I don't want to put her down or make her feel she hasn't achieved anything but I need to hold on to the control. We're around 7/8 months into this now and a million miles away from where we were. I'm desperate to keep the momentum going forwards, but I guess that's wishful thinking? I do understand this in a long haul illness and it might be something she'll always have to be mindful of even when recovered. Dh brother is a recovered alcoholic 20+ years sober and its been interesting listening to him talking about how he has to work hard every day to keep himself well and look out for the warning signs that he might relapse. It made me think that dds life could be like that. It's really sad, but also positive, he's living proof that these illnesses can be beaten and with the right support and mindset, can stay beaten.

Sorry, I'm rambling on again 🙈

Sorry you're having a tough time SwattyPie xx

Why I often think ED are similar to other addiction illnesses.

My dd every now and then will want more control but what I've found is as time goes on the attempts are much less enthusiastic. In fact she was given the chance to make her own breakfast recently but after a few days was putting smaller and smaller portions in her bowl and 'accidentally' using the semi skimmed milk. When I said I was going back to making her breakfast I think she was relieved and accepted it immediately.

Just keep doing what you're doing.

Girliefriendlikespuppies Thanks. That's good to hear. This time around dd has been more accepting of me telling her
NO cooking. NO shopping. Whereas at the beginning it was at least a two month battle to completely take control and then many battles along the way. It gives me such an uneasy feeling in my stomach each time she pushes back. We get into a nice routine (mostly) and when that's threatened it gets scary again. 😨

I think this working towards independent eating is something covered in the Maudsley book- I think the having complete control is not intended to be a permanent state of affairs, indeed how could it be if your dd is, say, going to university. It may be too soon though. It's a stage by stage process. I would directly ask her team or get some more input on how to know when/how to move on and when to sit where you are. I don't know how you are supposed to know this stuff!

Yeah I have no clue how to get dd to independent eating, as far as I can see she'll never be able to move out!!

The minute she's given any freedom she reverts straight back to eating less, choosing the low calorie options etc.

Camhs dumped us ages ago as they said she was fine 🙄

I honestly don't see how to move forward unless she dd changes her mindset.