Teen Eating Disorders - Thread 6

[myrtleWilson]

Hello everyone, and welcome to anyone looking at these threads for the first time..

Here is a link to thread 5 www.mumsnet.com/Talk/eating_disorders/4360801-Teen-Eating-Disorders-Thread-5

We've seen such an increase in young people facing eating disorders and these threads are testament to that.

With that in mind, we thought we'd try to include at the start of each thread some resources that have helped us along the way to date. No one resource will be a panacea but hopefully this list will be a useful starting off point for any newcomers and a reflection for others. It is our first go at sharing a list of resources on a thread so it won't be perfect!

www.beateatingdisorders.org.uk

anorexiafamily.com/?v=79cba1185463

www.youtube.com/evamusby

www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA

www.orri-uk.com

www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/eating-disorders/overview/

www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf

@Girliefriendlikespuppies That's wonderful news! So pleased for you.

Hi all,

I’ve just read this thread and am absolutely terrified about my daughter’s weight and eating habits as I know we have a problem on our hands but I think I may have been sticking my head in the sand 😔

She is 14 and had always been quite overweight. She started Stagecoach classes in May 2021 and she started to drop a bit of weight which I thought was down to the classes as she was exercising quite vigorously. She also walks to and from school which is quite a trek (45 mins uphill on the way back) so I just thought she was becoming healthier. She was probably around 5ft before she started her lessons and weighed just over 10 stone.

The weight dropped off slowly at first but since February this year has accelerated and she is now 5ft 4 and only 6 stone 11. I hadn’t heard of WFH til I read this thread but I’ve worked it out and I think this puts her at 77%.

I think eating less happened so gradually that I just didn’t notice it, but at some point a few months ago I became aware that she wasn’t eating much and was stressing about how many calories were in everything. I thought it would help by putting My Fitness Pal on her phone and showing her the amount of maintenance calories she could eat for her height which at that point was about 1900 . What a stupid mistake this was though. She is now obsessed with MFP and won’t eat anywhere near that number of calories - some days she’s only eating 1000. I want to take it off her phone but I know she will eat even less if she can’t see what is in her food.

The poor thing is clearly hungry but just can’t bring herself to eat more than that. She checks calories on menus before we go out. She will tend towards eating a dessert when she can but to the detriment of healthy food as she has had the amount of calories she is happy with for the day.

I’ve begged her to eat more calories for a week so she can see she doesn’t pile weight on and I can only get her to agree to try eating 1200 calories per day this week which is just not enough (but in my head is much more than the figure I always thought someone with anorexia would be eating so then I think maybe I’m overreacting ). We’ve spoken about going to the doctors. She had a bit of a scare when exercising vigorously a few weeks ago where her heart was pounding at over 200 beats per minute and she couldn’t breath - she’s doing herself damage isn’t she? She’s not keen on the idea of going to the GP though as she thinks they will tell her to stop her Stagecoach classes because of the exercise. I just don’t know what to do.

Took her BP with a monitor my husband uses and it was 97/73 which I think is a little low.

Sorry for the long ramble - just needed to get this all out so I can start making sense of it all and work out what to do.

Hi @AndPeggy08 I only have 5 mins but don't want to leave your post unanswered

So sorry you find yourself here and although this isn't a good thing to hear it does not sound like you are over reacting at all. Your DD has classic ED symptoms.
In fact given the recent heart issue I would def call your GP today and get her booked in ASAP. Or if you are v worried (and I think I might be) you could go to A and E.
She sounds very underweight and very ill and yes the GP is likely to ban exercise...
I hope someone else will be along soon to reply more fully but please make that call today.
She has an ED and will hate you for dragging her there but at this moment you need to ensure her physical safety. So I would not be allowing exercise until she has had full blood tests and an ECG (and Ecg is a standard ED test make sure the GP orders or does one and that he/ she gets sepcialist advice when reviewing it).

Hi Peggy, I echo what lots has said your dd sounds very unwell and needs urgent medical attention.

I would actually suggest taking her to a&e today, she needs urgent bloods, an ecg and a refeeding plan as she will be high risk of refeeding syndrome.

Under 80% wfh generally means complete bedrest so you need to pull her out of school and exercise needs to stop immediately.

You need to start preparing for FBT (family based treatment) which is where you take full control of all her meals and snacks which need to total at least 3000 calories a day.

If you're on FB I would suggest looking at joining the EDSUK page as they have lots of useful guides and resources to get you started.

It is normal for you to minimise how ill she is and will be completely normal for your dd to be on complete denial about it.

Your dds behaviour will massively nosedive once you start taking control but you will learn to separate your dd from the ED which is currently holding her hostage.

I'd also suggest taking her phone off her especially if she's using any calorie counting apps. It will not be helping ar all.

Don't waste time feeling guilty, we've all been there. I encouraged my dd to start running at the start of this journey 🤯

Take control today though, do not not wait as every day she restricts will make recovery that bit longer.

Hi @AndPeggy08 Just echoing what @Lottsbiffandsmudge and @Girliefriendlikespuppies have said. MFP was really central to my DD's spiral downwards. Your DD's WFH also very low. She urgently needs a referral to a specialist ED team - and possible hospitalisation for stabilisation if her heart is struggling. Wishing you all the best.

Just sneaking on while working but thank you all so much for your replies. I’ve got a doctors appointment for 5.20 this afternoon - and reading your answers helps me to understand what I need to ask for. It’s one of the senior doctors rather than one of the trainees we always normally get put with so hoping this means he has experience and will take it seriously.

I can’t believe I’ve let it get to this point 😢

She won’t be happy I’ve got an appointment but it’s definitely for the best.

@AndPeggy08 I echo everyone’s comments. My experience is to be persistent with the doctor, we were fobbed off by my DD’s GP and we ended up in crisis. GP’s don’t have much training with regards to Eating Disorders, you are your daughters best advocate so may have to demand, your daughter probably won’t answer the GP’s questions honestly, this is driven by the anorexic thoughts.

For me it was totally alien, why wouldn’t my DD want to get better? It’s a serious mental illness and you have to take control and bully the illness, hard to do but treat your teenager like a toddler and be consistent and firm with them, the illness makes them manipulative and you have to challenge this - I had to change my parenting style from quite easy going to strict - you have to to protect your daughter from this illness and tolerate their distress.

This thread is a lifeline for advice and support, I wish I had discovered it earlier.

Take care of yourself so you can take care of your daughter.

@AndPeggy08 i think we can all echo the 'I can't believe I let it get to this stage'. Until you're in the thick of it, it creeps up slowly until BAM! and then you're overwhelmed and what to do. It will be a shock for your dd but will hopefully be the start of the turnaround that is needed. Good luck Let us know how you get on.

@AndPeggy08 so glad you are going to get her help... the first step is the hardest. Don't waste time beating yourself up. We have all been there. We all missed it. We all felt stupid and disgusted with ourselves. It's the illness, it is secretive and manipulative. What she needs now are strong parents who advocate, stand up to this bully in her head for her, tolerate her distress without making it their own, and who never give up.
It's a long hard ride but you have started. Get a referral to your ED team, get the tests she needs organised and start the process.Try not to be fobbed off.
Please update us later

Thanks so much everyone.

We went to the doctors and to be honest the GP, as lovely as he was with my daughter, could not remember what to do next with a 14 year old with an eating disorder. He is calling us back tomorrow when he has worked out whether she needs a referral to a dietician or CAMHS.

He asked her a lot of questions and she downplayed it a lot. She said she knows she’s too thin so he said that is a good sign. I know she still won’t eat enough to stop losing weight though. He told her that anorexic people don’t think they are too thin so he doesn’t think she is anorexic yet.

He weighed her and confirmed her BMI is just over 16 and said that they only really worry when the BMI is 15 or below. He listened to her heart and said her heart rate was the top side of normal. Didn’t suggest that she needed anything else or to stop exercising. I kept trying to step in to explain what the problem was but he kept cutting me short and pointedly talking to my daughter instead - which I understand, he doesn’t want me putting words in her mouth, but I feel like I haven’t advocated very well for her.

We spoke about her having her scare a few weeks ago where her heart rate was so high that she was in a panic and she told him that her friends had commented that her lips were blue at school - he just advised that if they start turning blue regularly or she starts suffering with shortness of breath more frequently and for longer periods of time we go back to see him. He said she doesn’t have a heart murmur.

Since we got home she has started talking about trying new things for her breakfast - so maybe just taking her to the doctors has set her thinking. I hope so.

I’ll await his call tomorrow and see where we go from there.

Peggy I'm really sorry but that Gp sounds useless, I don't want to scare you but your dd could go into heart failure!! She needs to have her bloods checked and an ecg and the quickest way to get those checked would be a&e.

Anorexia is caused by weight loss and genetics and your dd sounds very much in the grips of it.

Can you self refer to an ED service? Check your local community health services page and see what they suggest for eating disorders.

If you want to start refeeding at home that means taking her out of school and ensuring she eats 3 meals and 3 snacks a day. She eats what you give her, there are no negotiable foods and they need to be high calorie and high fat.

You will need to take time off work as it's a full time job.

I'm sorry you found yourself here but you can't ignore how ill she is. The fact her heart is already showing signs of struggling is really concerning.

@AndPeggy08 dd was under a community dietitian for months before being referred to CEDS. She kept telling me not to worry as her bmi was 16. When we saw CEDS they admitted her to hospital immediately due to her wfh. Like your gp, the dietitian was clueless about this. So yes you need to push a referral quickly.

@AndPeggy08 last year over the course of six months and four visits to our GP our daughters weight dropped constantly. As parents we knew that there was a problem however the GP referred to BMI and heart rate, saying such as ‘she’s growing / she’s athletic so has a slow heart rate’ - I don’t mean to shock you but by November she was admitted to hospital and her heart rate was so low some nights we didn’t think she would make it to morning. When we are out of crisis mode I will tackle the GP - for now for you I wish someone had said - push the doctor for a referral to CAMH and the Eating Disorder Service. Difficult to say but don’t trust your daughters self motivation to change things, take control of all food and any resistance to eating you know that is an Eating Disorder. Buy Eva Musby’s book asap. Before the diagnosis we convinced ourselves that our intelligent daughter was making healthy choices with her food, fruit for breakfast - vegetarian dinners, but taking a step back she was restricting food groups, quantities and calories - she deceived us and tbh we deceived ourselves to our enormous regret.

Be strong.

@AndPeggy08 how did breakfast go?
I am saddened but not surprised by the GPs lack of knowledge. I would echo what others have said and if you can self refer to CAMHS or the ED team.....what it is called and whether you can self refer depends on where you live.
BMI is not used for children. And the GP saying 'we don't worry until BMI is 15' has just given the ED another stick to beat your DD with.
Waiting til her lips go blue or shortness of breath is terrible advice.
Here is a link to the Marsipan guidance for children which is v helpful. It is incorporated into NICE guidelines if I remember correctly. I should have done this yesterday sorry. It shows the things the GP could have assessed- for instance did he take her blood pressure?
It also says a bit about not using BMI..... maybe if you have read this before you talk to him it might help?. It's aimed at hospitals mainly I think but can't see why primary care is different. MARSIPAN
Here are NICE guidance for detecting EDs it says clearly that if an ED is suspected they should be referred to age appropriate ED services. (Not a dietician most if whom are not trained in EDs)
BTW my DD often said she knew she was too thin. She still wouldn't eat though..... this visit may be the jolt your DD needs and I sincerely hope so but I would not waste much time finding out.

Shit day today. DD caught waterloading at her weigh-in yesterday. She was signed off to do her GSCEs at home for another week by the skin of her teeth - hadn't completed a single meal and only completed 2/3 snacks last week. We did manage to persuade her to have 3 Weetabix this morning (she'd cut down to 2), but then the ED came back big and fierce - refused her juice andvit tablet, threw lunchtime cheese wrap in bin - I then consented to let her have plain pitta with lentil soup (I know I should have made her a new cheese wrap) - she spat out food, threw hula hoops on table, threw pieces of wrap on floor, refused yoghurt, called me a fucking idiot who she absolutely despised etc.etc. I'm signed off from work with stress, and contacted the employee assistance program's counsellors who said it all sounded too serious for them to help. I hate this disease.

@AndPeggy08 our GP kept bouncing us back to the dietician, who said "I can't make her eat." One day I phoned the GP and said "She's dizzy when she stands and her HR is 144 when she stands. Is that ok?" She was admitted to hospital for 9 days that night and fast tracked to a psychiatrist the next week. That was almost 18 months ago and we're still under the Psychiatrist.

I would take her to A&E. They need to see her.

Hi @NanFlanders - sounds like you’re having a really tough time. I get called an idiot every breakfast, in fact I got ‘you were born an idiot, you live as an idiot and you’ll die an idiot’ - in between told ‘I hope you f die’. I just know it is not me she despises but it’s her self loathing that causes her to lash out - it’s taken months but I am more resilient (ie used to it) now. It’s hard to split DD from the illness sometimes, my concern is her younger sibling witnessing all the hatred and violence and the effect on DS who doesn’t understand. It’s a whole load of sht, I don’t know about you but find time to watch some mindless tv programme at the end of the day - that helps me to switch off before bedtime, then it all begins again tomorrow. Not a great comfort but we carry on as we don’t have a choice and we are not alone. Have you seen your GP - anti depressants may help.

Hi @D1ANA22. Thanks - I think I just needed to vent! Sorry to hear you are going through similar. Hope your DD is starting to make progress.

Thanks again everyone, your help and advice is very much appreciated.

@Lottsbiffandsmudge I’ll have a good read through the Marsipan guidance. She stuck to her usual breakfast of a small portion of cereals and tried to throw away the milk, managed to encourage her to drink it. She asked to go to the supermarket after I finished work to find something new she could have for breakfast. It wasn’t a very fruitful journey though - she thought she fancied a porridge pot until she saw that it was 214 calories which is too much in her head. She also thought about peanut butter on toast but after dissecting the label on every jar of peanut butter she didn’t want to buy any. My husband has just told me that this is going to be harder than he thought.

@NanFlanders I’m so sorry to hear how things are going - that must be so difficult for you. I have no good advice as we are fairly new to this but ((big hugs)) for you and your daughter.

@Lougle Am taking on board advice about A&E - I just need to get my head around it before I take that step I think. The GP hasn’t even called back today and I almost feel fobbed off. I feel like we would be laughed at if we went to A&E which is ridiculous really. I need to try to get over that and do what is best for her. I look at her and know she’s way too thin but it’s hard to see her needing A&E yet - but maybe I’m in serious denial 😔

Oh Nan I'm sorry you've had a shit day, I do remember those days. Dd threw food at me, told me she fucking hated me and wished I'd die on a daily basis for months.

In a way when I saw her lashing out like that it just gave me more fire to do what I could to get her better. For me that meant adding double cream to absolutely every mouthful she ate!!

Will she eat porridge? I think porridge made with double cream was absolutely paramount to getting her back on the right path.

Hi @Girliefriendlikespuppies

Oops. Posted too soon. No, I can't load - I added butter to mash one time only and she noticed and has never eaten it again. It's only in the last couple of weeks she's eaten anything home-cooked (Quorn chilli, egg-fried rice, and lentil soup) for this reason. I think she'd notice and I can't risk that. Meds review next Friday - keeping my fingers crossed that they add in something then which helps.

I think you probably are in serious denial.

Can you join the fb group? They are very good at giving support for people at the start of this journey plus they have files on the guidelines for FBT and what to say in a&e.

Your dd needs your help, her brain is so malnourished she can't make any rational decisions. When you go into a starvation state the brain takes a massive hit (it's around 60% fat so the body uses that to fuel the vital internal organs) the brain literally shrinks.

The result is a huge spike in anxiety, the inability to think and act rationally and a complete change in behaviour.

Your dd should not be making any decisions about food, do not ask her what she wants as she can't tell you. You have to take complete control in order to save her life.

Anorexia has s similar mortality rate to childhood leukaemia.

I'm sorry to scare you but it's really important you realise how serious this and how every day that passes without tackling it puts your dd more at risk.

My dd was nowhere near as ill as your dd is and was still nearly hospitalised as her heart was struggling so much.

You will need to take time off work in order to start refeeding, I would suggest taking tomorrow off work and taking your dd straight to a&e (after breakfast.) Do not leave until they have done a full set of obs, checked her bloods and done an ecg. They also need to put an urgent referral to the ED team and give you a meal plan and contingency plan for if your dd doesn't follow it. Ideally they will admit her for a minimum of a week to begin the refeeding process and monitor closely for refeeding syndrome.

Double cream is much less detectable than butter, you can add it to porridge, scrambled eggs and mash without any obvious change in taste.

You also have to try and keep any thoughts about it being an 'added' food. It's really not, it's normal to add butter and cream to these foods. Your dd needs them, it's her medicine and it's what will heal her brain in the quickest time.

Also she doesn't get to 'refuse' any food you make her, if she does you replace it with a higher calorie option. If she asks 'is there butter/cream in this?' You tell her it's safe for her to eat and you are giving her exactly what she needs which is absolutely the truth.

@Girliefriendlikespuppies I always follow your posts with interest and am really pleased to hear about the progress your daughter is making - really impressed with what you've done - but how do you not 'allow' refusals? We've sat in her room with a glass of milk or toast until she's has fallen asleep, confiscated phone, she's been out of school since Jan, so no leverage there, taken to hospital for NG feed 3 times (hospital have stopped this now as no good for her). If we try to physically stop her from leaving the room, she bangs her head till badly bruised She will only eat a very limited range of food - probably because she does fear additions - things she doesn't want are increasingly thrown across the room, dumped in the bin or thrown in the toilet. I would really welcome any advice.