Teen Eating Disorders - Thread 5

[myrtleWilson]

Welcome everyone,
Our last thread can be found here
www.mumsnet.com/Talk/eating_disorders/4279530-Teen-Eating-Disorders-Thread-4?watched=1&msgid=111172926#111172926

That we're on thread 5 in about a year is a reflection of the incredible increase in mental health issues, including eating disorders amongst young people over the last couple of years.

With that in mind, we thought we'd try to include 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

People to look up on social media
Hope Virgo
Ro-Recovering
James Downs
Cara Lisette
Adam Fare
BarefootRebel
Ilona Burton

Girlie hope Covid is not too bad for your DD

Betty - great news on a gain!

dark how are you doing?

I have been having a look through the threads here and think this one might be most helpful.

My 13 year old stepdaughter seems to have developed an eating disorder. It has been a few months now and we have now got a referral from school and also from GP so I assume are on some kind of waiting lists.. She is supposed to be seeing the counsellor at school this week. She has lost about 1.5 stone in the last couple of months.

The situation is causing a lot of stress all round. She is now almost totally refusing food, first it was breakfast, then lunch and now tonight she has also refused to eat dinner. We are pretty sure she is vomiting up everything she has been eating at dinner times as it is - she will come in having eaten nothing all day be starving, eat loads and then will be in the bathroom for prolonged periods. She is extremely vocal about her lack of eating, she has basically said yesterday unless you let me eat a bowl of salad for dinner I am not going to have dinner now and that is what has happened today. We find her matter of fact nature about the whole situation hard to understand. She knows someone that has died of an eating disorder and still it seems to make no difference to her approach.

I do believe there are lots of other issues surrounding this and although she has stated that she wants to get to 50kg (she is about 5'7") there are clearly lots of power plays and behaviours that are purposely to upset her parents. She has always had issues around family and unfortunately there is another little brother due in a few weeks time (mine).

My question really is how should we be approaching this? Should we be pandering to her eating requests? Should we be refusing to let her enter the toilet after meals? Should we be taking her phone away? (and maybe replacing it with a brick to avoid the social media?) Is there any advice anyone can give as to how to show her support without making everything worse? We are all feeling quite out of our depth and overwhelmed by the situation and don't really know what to do for the best. Up until a few weeks ago it felt like a controlled situation but it seems to have spiralled very quickly and although she is acting like she is in control of it I think she has probably gone over the edge as she is obsessively counting calories, talking about food and comparing herself to others (there are a few friends she has that have eating disorders and it seems like she is trying to copy/outdo them in this area.. which sounds crazy but she has always been one to follow others)

Sorry this is long and rambling but we are all feeling a bit lost right now. My partner and his ex particularly are extremely stressed, I am trying not to let it stress me out as I am very pregnant but it is very hard to see her and them so effected.

Mama with that amount of weight loss, the not eating and the purging your step dd sounds very ill. Have a look on the junior marsipan checklist as you probably need to take her to a&e.

You and her parents need to start gearing up for FBT, join the EDSUK fb page as they have a lot of information in their files to get you started.

Your step dd needs bloods, an ecg and basic obs checking at the Drs urgently. She will need to come out of school and someone will need to be with her 24/7 to ensure she eats and does not purge.

She needs to eats 3 meals plus 3 snacks a day and as a family you will have to unite to work out how best to implement this. Her parents need to take full control of all food related decisions, all the food should be high fat and high calorie.

Any previous feelings you have about your step dd need to be shelved as she is completely in the grips of a serious illness and her behaviour will reflect that. Once you take control and insist she eats she will kick off, scream and generally behave in shocking ways.

You have to separate the child from the illness.

I'm really sorry @mama1644 and @NCnora
that you've had to join us. I won't reiterate everything that's been said above, but I wholeheartedly agree. Once you've given the behaviours a name and you start tackling them, it gives you a sense of purpose, though.

Strange but welcome turn of events here.. DDs PCR test came back negative and she has no symptoms so she’s allowed back to school today.

🙌🏻

Hi All,
Ive been following this thread for a long time now. My 15 year old son was admitted to hospital at the start of March with anorexia. He spent 5 weeks there. After months of tantrums, refusals and behaviour that was totally out of character for him we have only just reached 95% wfh. However, now that he has got there he doesnt want to put on anymore weight as this is classed healthy. He thinks anything over and above this is overweight. Anyway my issue now is that he is attending school just 3 mornings a week and the school and CAHMS are trying to get him to increse this but he does not want to. He is totally refusing to increase and in fact it took us a long hard battle to get him back in Sept in the first place. It is causing nothing but arguments in the house and totally stressing me out and im in tears about 3 times a day as his behaviour is shocking. He answers back and is argumentative all the time. If he doesnt get his own way he will refuse his food and he knows im never gonna let him get sick again so knows im going to give in to him rather than him not eat. I think he got away with so much bad behaviour all through this that now he thinks its ok but its totally not. We had such a close bond as hes my youngest child and only son but i can feel us drifting apart as im not liking the person he has become. Anyway sorry for venting but any suggestions on how i can get him to increase school

Thank you so much for your replies. I have to say (despite reading a lot of what you have written in previous posts) I am really quite shocked that this is the place we are in - especially with regards to school attendance and feeding requirements and the idea of taking her to a and e? What will they be able to do at a and e?

Her mum is going to update the GP as to her current eating situation as this is now different to how it was 2 weeks ago. She has a blood test and ecg booked in but the urgency is definitely not there as it is 2 weeks from the appointment being made, it will happen later this week.

With regards to school attendance what exactly are the rules on this? She is not underweight (yet) so is it solely based on intake of food? - this would make sense to me but my understanding is that you need to be underweight before anything is taken seriously by outside agencies? The marzipan document also seems to suggest that being underweight is quite a large part of the criteria. I am not sure of her exact weight atm but I guesstimate from the last time using the nhs bmi tracker that she is about wfh 104%

I am sure I am just in denial but it really feels like if she actually understood the consequences of all of this especially with regards to school attendance etc that this would help her to try and change these behaviours but I really can't get my head round what her overall goal is in not eating at all - with all the long damage it does aside from the weight loss. Would you advise spelling out the consequences to her in black and white? From what you have said this hard and strict approach is what is required, however this is quite conflicting with conversations that have been had with the school and with a local mental health charity who seem to suggest the opposite and that you can't do anything but let her get on with it. The charity in fact seem to suggest that therapy is not helpful in these situations. They offer group activities and a space to talk if you want to.... they are also very expensive.

@Bettybarkalot123 that's great news!!

@Runningoutofsteam1 welcome to the thread. I actually think you might need to call his bluff. EDs come about, usually, through a combination of circumstance, genetics, and control. You know your DD is a healthy weight now, so there isn't a huge physical danger in missing a meal or two once in a while.

Your job, as his parent, is to look after his whole being. If you are confident that there isn't an issue with his school itself (e.g. that he needs to change school) and you're not minded to Home Educate him, he has to go to school. It's the law - he has to be educated. So I think you have every right to use consequences if he doesn't do what he needs to do willingly.

I sometimes have to take my DD2's phone away until she gets ready for school. She hates it and thinks it's really mean, but I'm her Mum so I have to do what I need to.

Hi running and welcome to the thread.

Does your ds know his weight? I'm guessing so given he's said he won't gain anymore. This is unfortunately what can happen if they're not blind weighed. Personally I'd insist he's blind weighed and I'd be pushing to get his weight up and above 100% wfh.

It sounds like you may be hitting the extinction burst (this is a point in recovery where the ED knows it's under threat and gets v v loud) the only way to get passed it is by really pushing more and more food.

Hold onto the belief that your lovely son is in there he's just got an ED that is holding a gun to his head and making him behave this way.

With regards to school, has he said what the issue is? Is he anxious? Is he on any medication?

I wouldn't be blackmailed by the ED (although I have been in the past!!) but it maybe that he does need to get to a higher weight before he feels able to cope with school.

Mama yes to hard and strict approach, eating is non negotiable, she has to eat and she has no say in what food you give her (definitely no salads!!) Also no vomiting, bathroom door stays open, no going to the toilet for at least an hour after food.

If you are right that her weight is still okay you may be lucky that stamping down on it now hard and fast is all that's needed.

With regards to school, will they supervise her eating and make sure she doesn't vomit? If the answers no she'll need to come out until 3 plus 3 is established.

Hi All,
I've not been very active on here but I have been reading the posts. It's such a long-lasting illness . My DD is doing pretty well but we are stuck on weight at the moment, it's not ideal but it's a healthy weight just a kg or 1.5kg's of where she should be - so a massive improvement from where she was!

I've got a question for those whose DD's or DS's have suffered with bulimia..... my DD hasn't had this aspect of ED.

However, a friend's DD has it and she isn't really getting any help medically. What do the doctors do to help this ED? The girl is purging every day, probably multiple times and binge eating. Apparently, her WFH% is not at super dangerously low levels, though she is looking more and more gaunt. What help should my friend be aiming for? The purging must be really damaging her body too. It seems the Dr's aren't paying much attention to the situation, sadly.

Sotired I think generally the advice is strict supervision to stop purging, take bathroom door off hinges, sleep in with them, no toilet for at least an hour after food Etc. Supervision of all food to ensure 3 plus 3 and no bingeing.

And then distract, distract, distract to keep mind off the desire to purge.

Oh and she will need bloods and an ecg doing urgently, there's a real danger that her potassium or other electrolytes will be out of sync which can cause death (sorry to be blunt.)

thanks @Girliefriendlikespuppies super helpful

Hey,
This all started with bullying at school so therefore he is very anxious about returning full time although the school have been great with him. Sometimes i think he can play on it though so he has abit of leniency in relation to what is expected of him regarding work. However he is falling so far behind and may have to repeat 4th year. He says if he returns full time then people will think hes better and he doesnt want people to think that (which i dont understand)

In relation to him refusing food, if he doesnt get his own way he threatens this which is so frustrating and yes i have called his bluff but then he threatens to call CAHMS and say im not helping with his mealplan. He is olanzapine, sertraline, forceval, thiamine and promethazine.

He does know what percentage wfh he is cause CAHMS tell him every week whether he has lost or gained and work out the %. Even if he was blind weighed he would still need to know this info because he also has aspergers and he needs to know everything or his anxiety goes through the roof.

It has put such a strain on our family and i just cant see light at the end of the tunnel.

Lastly, massive well done to all you lovely mums for battling this horrible illness. You should all be very proud of yourselves x

Hi all,
Not caught up yet so will do so tonight. Welcome to those joining us - although sorry you find yourselves here...

Good news/bad news here - there was a cancellation in the assessment team for adults so DD was offered that this morning (her assessment appointment not due till end of the month - 8 weeks after referral). She's going to be referred into adults affective team within 24 hours but probably then won't be seen for about a month....

Bad news - her mental health is worse than I thought and she's been restricting at c1000 calories a day for at least the last couple of weeks.

Am so worn down by it all - those few months in summer where she was doing well in recovery are about as remote as they could possibly be

Oh Myrtle im so sorry to hear this. I have been following this thread for a long time and i remember reading your posts in the summer thinking im never going to get to that stage with my son.
Head up, you've done it before with your daughter and you will do it again. Its just a blip but you are a strong woman and you will get her back to recovery again. Sending hugs

Have now read through and caught up a bit

@NCnora how do you feel about getting your ex on side in a pre-emptive move. We by passed a GP appointment as in DD"s first CAMHS appointment they referred her straight to hospital so in all honesty I'm not sure what I'd say to make her go to the GP. I probably would have said that we either go to the GP in an ordered planned manner, or we wait until the inevitable day when you collapse and we end up in A&E... I hope you've managed to persuade her..

@Bettybarkalot123 Great news re PCR & lovely that DD is doing some jewellery though - my Dd does too and she says it can be a good distraction from the ED thoughts - partly I guess because you have concentrate on patterns etc and it keeps hands busy.

@mama1644 I won't repeat other advice except to say her weight can be a red herring - a good clinician will be considering the scale of weight loss in time not just the current weight position. If you feel at any point you're being fobbed off - ask them to consider whether she fits the criteria for atypical anorexia - DD was initially assessed as this and then it changed to anorexia. Without wanting to alarm you - the scale of weight loss over short time (and the scale of restriction) is how my DD ended up in hospital almost as her first interaction with the health service - plus the damage she's done internally to her body is still affecting her.

@Runningoutofsteam1 thank you for your lovely comment - this thread is so helpful when you need it the most. Re your DS saying he'll call CAMHS - definitely call his bluff on that one - our CAMHS were great at cross checking facts with us... The comments about if he returns to school people will think he's better are text book ED voice - we used to ask DD how ill she felt she would want to be before she took action and then ask her whether she'd give the same advice to someone with heart pains, or point out that many times during her illness she reached the next 'target' the ED had set her and the ED moved the goalposts. Eventually we said that the ED's goal is for her to die - whether that happens through suicide, through organ failure or another route the ED doesn't care, the ED just wants her dead. It did stop her in her tracks for a bit (I'd use this tactic alongside recognising that the ED is giving him something he's missing elsewhere - not in the same conversation obviously ) but I realised that always painting the ED as evil was counter productive, I had to recognise and acknowledge that the ED was filling a hole she had but make the point that once the ED had filled the original hole the ED saw it as a base camp to make a full on assault on her existence - does that make sense?

Myrtle I'm so sorry to hear your dd is so unwell again, do you think it's being in college that has set her back? From an outsiders perspective she seemed to be able to recover when you pulled her out of college and has gone backwards since going back?

I know from my own experiences when I was 17/18yo and struggling with crippling anxiety which meant I wasn't eating enough or able to leave the house that leaving college was the turning point for me. It took all the pressure off, I got a part time job in the worlds most boring shop (anyone remember the shop Jumper?!) and I gradually began to recover. After a year of working there I had regained the weight I'd lost and I was able to travel to America on my own to work in a summer camp.

Running my dd constantly says she doesn't want to get better or for people to think she's better, I don't get it either. Re school I'm not sure what to suggest, I think I'd push a gradual increase? So longer days on the days he's already there maybe.

@myrtleWilson thanks for your message. I decided to postpone the GP appointment by a week due to the pressure of mocks, I didn't want her to freak out. BUT I've told her it's non-negotiable, on you guys' advice, and she seems to have accepted it, she even sorted getting out of an after-school class on Monday for us to go. She's talking to a lovely new wellbeing teacher at school who told her how important it was to get everything checked out esp as periods have stopped. In other news, I told her Monday night that all meals will now be prepared by me. She flipped but, again, accepted it in the end and ate a reasonable dinner. At breakfast the next day (I normally leave her to it as she's an early riser and I'm not) she told me that she's been having "1 or 2" rice cakes with a spoonful of yoghurt on top. Even if it was 2 that's

Sorry me again. My DD has also shared with the wellbeing teacher that her BMI is 19 (34th centile for her height) which of course may not be true but - if it is - that's a weight of approx 8 stone 2 at 5 foot 5. I'm very surprised it's that high but of course that's not 'underweight' - does this mean she won't get a referral to CAMHS? Thanks for all the replies re me sharing info with her Dad, at the moment I haven't as we don't co-parent at all, he won't communicate with me. It's very hard. DD is with him for 3 nights this weekend though so I do have to say something. Dreading it.

@NCnora - CAMHS shouldn't gatekeep on basis of BMI - they should adopt a 'state not weight' position - we were accepted into CAMHS on that basis (she 'scored' highly on marsipan due to scale of weight loss over time, level of restriction and poor observations - high postural drop etc). That said, pressure on CAMHS has gone through the roof even since our admission last summer so you may find your service having to triage admissions etc and you may have to be prepared battle - I hope this isn't the case though...

NC glad you've made some progress and your dd is accepting it at the moment. Is the being vegan a new thing? Personally I would stamp that out sooner rather than later as it's an ED trick to restrict food. They also need all the animal fats (butter, double cream, ff milk etc) to recover. The rule of thumb is unless they were veggie/vegan/pescatarian for 3 years before the ED it should be considered an ED behaviour and stopped as soon as possible.

My dd also stopped her periods at around that weight and was physically v v ill (heart rate 40 bpm, low bp, cold all the time, hair falling out) so definitely think state not weight.

Sorry things are so difficult with your ex.

In other news I had a zoom call with dds psychiatrist this morning and they're gearing up to discharge her 😱 I've said please not before Christmas but think it will be on the new year. Tbf I think we've probably gone as far as we can with their support, at the moment all we get from them is a 3 weekly zoom session for me and monthly weight check for dd.

@myrtleWilson thanks I will keep fingers crossed and hope my (considerable) battle-skills are not required. I read the marsipan doc and think she'd be amber on a lot already, with the tests of course I don't want them to show up physical problems but ...it is what it is.
@Girliefriendlikespuppies she's been vegan a year and veggie for about a year before that, so it does predate the ED and she's admitted that it was part of the reason she went V but at the moment I don't think I'll be able to talk her out of it. But I'm going to try to at least get her to go back to veggie. I suppose if the tests find physical problems that might give me some leverage. I'm sorry to hear yr DD might be discharged soon. I hope they know what they are doing. I'll try to read your posts above so I understand your situation. Thanks for all the advice.
GP has just called and put the appointment back to the Friday of next week as we need a half-hour slot, which is disappointing, but I'll keep calling in the meantime to try and get a cancellation. Can anyone work out DD's wfh based on the figures I gave? I read an article on it but I'm still a bit lost.

NC Lougle is the wfh lady.

I found these today in Aldi, over 200 cals a bar 😊 perfect for snacks.

@NCnora WFH depends on her exact date of birth, sex, weight and height. But to give you a rough idea, if she's only just 15, she's 95.16% WFH. If she's almost 16, it's 92.92%.

Much more important than WFH is her attitude to food (how restrictive she's being), whether she's aggressively exercising, and how rapidly she's losing weight.