Any advice please from parents with teens with eating disorders?

[SendTheNextOneIn]

My 13 year old daughter has recently been diagnosed with anorexia. It all came out a few weeks ago and we are now under the local CAMHS eating disorder team. It’s very early days in all of this but to be honest I just need to talk to some other parents who may have been through this and can offer me some reassurance that there can be light at the end of the tunnel?

The CAMHS team have advised that we as parents take over all food decisions, food prep etc and simply present her with the food she needs to eat. So far this is incredibly easier said than done as if there is anything on my daughter’s plate she can’t bring herself to eat then she simply won’t eat any of it. Her main restrictions are around low/no fat and small portion sizes.

I currently feel very lost as to how I am to encourage her to eat, the little voice she has in her head telling her not to eat certain things, that she doesn’t deserve to eat certain things, is very loud and I am struggling to get through to her.

Some days she feels positive that she can beat this and I cling on to that, but it often all disappears at mealtimes.

Did CAMHS look into autism? Had your daughter been a fussy eater as a younger child? Did she have sensory issues with clothes, food textures etc?

Your daughter is the prime age for autism-related traits to surface. Girls who seem conscientious, quiet, shy, anxious etc before puberty can fly under the radar until puberty when their differences become more noticeable. They can become more aware that they don't fit in with society's expectations in secondary school.

Anorexia is often about control, with sufferers taking control of this one thing (what food enters their body) when nothing else feels under their control, so the advice to remove all control over what and when she eats seems strange. If she has autistic traits or anxiety or low self esteem then this should be dealt with as a priority.

Do you have access to a dietitian? If she is interested in science then it may be helpful to think about the biology of her body: bodies are made of protein and fat. (Fat is not the enemy, especially for growing bodies. ) We need good nutrition to build bones, muscles, organs, skin etc. Fat is needed to insulate our nerve fibres and to build skin.

Thank you @SeaGreenSeaGlass, I appreciate your post.

I am 99% sure she isn’t autistic, CAMHS haven’t mentioned anything like that yet but we’re only a couple of appointments in. No sensory issues, she wasn’t a fussy eater when she was younger. She’s always had a varied diet and happy to eat most things.

We’re meeting the dietician next week. I do think it will help her to start to look at it from a science point of view and what your body needs to function and grow.

I have been your daughter and I am not sure how I would’ve reacted if all control was taken as the entire point is having control!!! Can you make food plans with your daughter and she can plan and then you make it, definitely investigate autism and dont make her go food shopping, make sure she isn’t on any pro ana stuff or whatever it’s called nowadays but most of all be there for her, understand and don’t push her away no matter how hard it gets, have hard conversations - is this what you want for your life? Talk about feminism!

@Emonadei know, it surprised me as well. They’re following the Maudsley Method which is essentially family based treatment. Our care coordinator was very clear that we are to simply serve the sort of meals that we would have eaten prior to all this, as if she’s just going to magically sit and eat it? This is the most baffling thing to me. I can be supportive and encouraging and empathetic until I’m blue in the face but I can’t force her to eat food she simply can’t eat right now.

Hi. I’m so sorry you and your family have to deal with this - it’s impossibly hard. I appreciate you didn’t ask for personal experience of people who’ve had EDs but wondered if it would help. (I was also diagnosed at 13. Things are a lot better as an adult).

Meal times were awful. If I was given any leeway, I’d manipulate it so that I could eat less. No-one ever took control for me so every piece of food that went into my mouth felt like a failure. With hindsight, it would have been so much easier to have been told “You must eat this” rather than having to make that decision myself and blame myself for being weak. Can you give her an either/or choice eg wither cereal with full fat milk or toast with lots of peanut butter? That gives her an element of control but the calories themselves are non-negotiable. Get medics involved too if you think it will help persuade her. I was allowed to stay out of hospital if I put on at least 0.5kg per week. The threat of hospitalisation was far scarier than the food on a plate at home. Bear in mind that rationale decision making hopes out of the window until you’re somewhat weight-recovered - if you haven’t already been told about the Minnesota study, look it up to find how starvation affects the brain.

Fight fight fight for as much counselling/therapy as you can get. This is a serious psychiatric illness and it needs intensive intervention. It’s unlikely to go away until your daughter figures out what’s making her unhappy and finds other ways to cope. I wish I’d had family therapy too as so much was interlinked with the people around me. Could this be something that would be useful?

Look up Juniver, an AI-based recovery app. It has features that help coach you through the urge to not eat.

Medical stuff - if this goes on for any length of time, look into bone health. By 18, I was seriously osteoporotic (although thankfully it’s reversible). Consider talking to medics to figure out what you can do to support her through puberty (I starved through growth spurts so am about 4” smaller than expected based on siblings).

Put on your own oxygen mask so you can be there when your daughter needs you. She’s lucky to have a mum who’s fighting her corner.

Thank you for your input @anothermamabear, I appreciate all viewpoints and experiences. I’m glad you came through it and are doing better now.

Full fat anything and peanut butter are firmly on her ‘fear foods’ list at the moment, but there have been a couple of times over recent days where she’s felt strong enough to try something she’s felt unable to eat, so they may be something she feels strong enough to try soon. At the moment me saying ‘you must eat this’ isn’t enough to drown out the voice in her head saying ‘you can’t eat that’, and she has a stubborn streak a mile wide so she will just point blank refuse to eat anything she doesn’t want to.

I believe it’s mainly linked to feelings of low self esteem, belief that she doesn’t ‘deserve’ a lot of things, and she’s struggled since starting secondary school with her friendship groups, as many teens do. There’s been some low-level bullying from ex-friends, and she’s had a pretty rough time of it in that respect. Our care coordinator said that they’ll do some work with her soon on body image and things like how she perceives herself and how she thinks other people see her, so I’m hoping this sort of therapy will help.

she’s the most wonderful girl (my eldest of two children) and she deserves the world. She’s been talking about how she wants to travel the world and be a marine biologist and live in Paris and I so badly want to help her live her dreams.

Hello, I’m really sorry you’re going through this -we’re living it too. My daughter is 14 and was diagnosed with anorexia in May. We are under the care of the Maudsley and she has been prescribed the dreaded non negotiable meal plan with all responsibility for getting her to stick to it falling on me. It’s horrendous and, like you, I found it shocking that they expect me to be able to just tell her to eat. If it was that simple, we wouldn’t need their help!

I really appreciated @anothermamabear explanation of how me taking responsibility for the meal plan might actually help by reducing her feelings of failure when she eats. It’s been an absolute nightmare/almost impossible trying to get my daughter to relinquish control. I feel like she needs therapy to enable this, but the line from the maudsley has been she will not be strong enough to engage in any meaningful therapy until she eats enough food to get her body out of starvation mode.

My daughter is diagnosed autistic - rates of anorexia are definitely higher amongst autistic girls, but it’s not exclusive to them.

Things that have helped - reminding myself we’re both on a change curve with the diagnosis (shock, disbelief, anger etc) and listening to The Weigh Up podcast on BBC sounds together, so we have some way to talk about what she’s going through.

This was my DD a few years ago, and she was the same age as your DD.
Please feel free to pm me.

Honestly - follow what the specialist tells you. I remember thinking that there was no way on Earth it would work, it was only when I reached the end of my tether, and dug my heels in, and stopped putting up with all her excuses that she started to get better. For many months, I thought the hospital staff were talking rubbish, but with hindsight, me giving into her added to the length of tine it took her to recover.

Here are some examples of things that my DD did to try & avoid eating, which I wish someone had warned me about, because then I would have appreciated that it was all an act:

Pretending to drop food on the floor;

Hiding it under the sofa - for a snack I used to give her a portion of nuts sometimes, & we'd have them watching a film...one time, days later, I found a load of them down the side of the sofa so from then on, she ate then at the table with me facing her & watching her every move;

Pretending that she was feeling sick, and fake wretching so that I would not make her eat in case she was sick. In the end, without any emotion, I used to say - you ARE eating it! If you're sick, so be it!

Basically, try & leave your emotions out of it & try to stay calm. She will probably cry, throw a tantrum, try and make you feel shit...tell you that she feels ill, but I can't emphasise how sticking rigidly to the program works.

Happy to message you anytime.
I wish you & your DD all the very best.

Are the people advising you specialists? I would just ensure you are getting help from people.who have worked with many many hundreds (thousands ) of children like your daughter. If you dont feel that is the case I would be paying if I could for that level of expertise

Does she have access to social media? If so, have the CAMHS team said anything about it?
Is her weight very low already?

Im sure youve be told already but watch for her over exercising and using laxatives.

Thank you everyone for your comments.

@MIAMNERI’m going to be listening to that podcast, thank you. And I’ve shown my daughter.

@PhaseFourI will keep persevering. If I try to dig my heels in at the moment, she just digs in harder and refuses to eat, so whilst I’m trying at every meal I do feel like I’m giving in too much as I’d much rather she eat something than nothing.

I emailed our care coordinator today as I just don’t get how this is supposed to work, and she’s recommended looking up Eve Musby videos on YouTube so I’ll be doing that too.

@waterratwe are currently being treated by the local CAMHS eating disorder team, so I have every faith for now that they know what they’re talking about.

@VoooooooooooVno she doesn’t have/use social media, and she’s definitely not exercising, purging or using laxatives. It’s just very restricted eating, with a focus on low/no fat and sugar. Her weight is I believe at the very lower end of the recommended weight for her age/height (doesn’t help that she’s also very tall for her age), possibly just tipping into the underweight bracket.

@SendTheNextOneIn
Wondering how things have been since I last posted, OP?
Hope you're baring up.

Hi @PhaseFour, thanks so much for asking. We’re doing ok. Had an appointment on Friday with our CAMHS coordinator and it wasn’t great. My daughter had really been struggling to eat much of anything and also not drinking enough, so we were one bad blood test away from being sent to hospital. However she came away from that appointment with the determination to not end up in hospital, and has done brilliantly over the weekend. Not without some struggles, but she’s been a lot more open to snacks, eating a decent breakfast, and trying to increase her portion size. She’s still not comfortable with any full fat dairy, like cheese. She has been having some milk on her cereal though.

We had our first visit today from a community team that come at mealtimes to support with any issues like encouraging to eat, or staying for a bit after to help distract from food guilt thoughts or anything like that. My daughter isn’t totally sold on them being involved as she doesn’t like eating in front of people but I’ve just said we’re going to give it a try, as clearly they do help otherwise they wouldn’t exist as a team/service.

We’ve got our next CAMHS appointment tomorrow. I’m really hoping her medical obs are improved as I think that will give her (and me!) a boost.

The support that you are receiving sounds very different to my family's experience - different Health Authorities, I expect.

There definitely are some positives in your message, which were great to read. I wish you and your family all the very best - it has such a massive impact on everyone, doesn't it?

I forgot to say - I hope there was an improvement in her medical obs.

Find a pediatric highly trained nutritionist. Not a dietitian. Nutritionist has mental health skills also. Private

It doesn't work that way. Your cooking isn't the fault. Your privacy shouldn't be breached by strangers coming to your home to boss you around.

I would pay.

Yes there was thank you. Her first weigh in that was a small gain, rather than all the losses she’d had previously and improved pulse and bp.

And yes it has massively affected the whole household. We have a younger daughter who thankfully is pretty much oblivious to it all, despite having to be brought along to a couple of appointments that have fallen on my non-working days, but my husband feels a bit useless I think. As in, my daughter is gravitating towards wanting me to be her main support, for me to make her meals, to talk to me when her mind is racing, and whilst I want to be there for her it also means a) I don’t get a break from this at all as she is with me from the moment she gets up to when she goes to bed and b) he’s not really sure what to do with himself so is just leaving me to get on with it all. I’m drained by the end of the day.

are you on the teen/young person support thread @SendTheNextOneIn

No I’m not, I didn’t know there was one. Is that in this forum section?

Never mind, I’ve found it thank you for the signpost.

https://www.mumsnet.com/talk/eating_disorders/5334326-support-thread-14-for-parents-of-young-people-with-an-eating-disorder?reply=145949743

Here you go... I inadvert started this thread of threads in lockdown as my then 17yr old was in the grip of anorexia. The threads were a lifesaving space for me and I hope they will be for you - most importatnly you'll find people who really really get it xx

When my sister was very anorexic, food was always placed in dishes on the table for us to help ourselves. We were not allowed to look at her or her plate or to comment on what she chose. If she chose to eat something from my plate, I had to say nothing. After the meal, she would often volunteer to clear up. If she did this, we were not allowed in the kitchen until she had finished in there as this was when she would eat, if at all. In addition to our family regime, she was having (private) counselling and was weighed weekly by the GP with the understanding that if her weight dropped below a certain level, she would be hospitalised. I don't know if recounting this regime helps, but it may be worth a try doing it this way if the advice you have been given isn't helping.

Had same experience with CAMHS and my DD became much worse. I found this app which has programme to support me and it's really working, perhaps out of fear that she will have to go back to CAMHS, but doesn't really matter why. It's called univa - I found it by googling