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

Bloody hell love I would have completely lost my shit at her, I'm raging on your behalf!! That is absolutely disgusting way for her to behave. How old are all your dds?

The fact she's done that plus the sudden desire to be vegan would make me extremely suspicious that she wants to/is restricting and controlling food.

As for your eldest dd I wouldn't discuss it with her but continue feeding her as you have been doing and use the same consequences/leverage as you have done up to now.

For the wannabe vegan dd I would be grounding her/taking her phone off her as how she behaved was terrible and massively irresponsible.

I think calling the other child's behaviour disgusting and appalling isn't on. AN dominates a whole family and can lead to the other children being neglected emotionally and in other ways- it's happened in my own as all my energy and time off work is directed to hospital appointments for one child and not the other. Resentment, anger, distress and fear is present for the non-anorexic children as well. Many teens are vegan or veggie these days and she probably exploded with anger that that's not a choice for her because of her sister. I have a friend who has a daughter with long-term AN going on a decade and she says the one thing she regrets about the whole thing is that she didn't realise the damage to her other child which now affects their relationship ongoing; they are not close and the non-AN child feels extremely resentful at the focus on the AN sister who has dominated her parents' thoughts for so long.

I'm not saying she did the right thing. I'm saying that punishing her and seeing her behaviour as 'dangerous' (which it may be) isn't being that compassionate to the children who are affected by AN in their own homes every single day. If we feel depressed and scared by our dds behaviour, so do they.

I'm not saying don't be cross at your dd, what she did is pretty low down, but I suspect it was an explosion of anger and distress at living in this weird situation and can be seen more as that than a malicious thing. Just my opinion though.

love what a horrendous situation for you. This is a tragic illness that affects everyone it touches. I have no words of wisdom but I hope you can get some help for the vegan dd as she sounds unwell as well. Sending you all the best.

Having read my message, I don't mean the behaviour wasn't disgusting and appalling, I think it was pretty outrageous. I suppose I'm projecting my own situation though, as my other child is struggling badly with her sister's ED, even feeling she's got to move out to get away from it at times. It's so hard for them all.

Agree about the impact on siblings. My FSchas been both upset and fearful about his sister, but also felt very sidelined (invisible') himself. I know it might not work for everyone, but my husband and I each separately took my son away for a week while the other stayed home with DD. We also asked that (non-AN) DS could be involved in hospital sessions as the AN impacts on him massively too.

DS - not FSc! Flipping phone!

I couldn't agree more with those suggesting to cut some slack to siblings of those with an eating disorder. It's bloody awful for them and they are after adolescents dealing with their own s**t. There have definitely been times when I've been infuriated with a sibling distracting or creating their own issues - a bit like when you had a baby you were trying to get to sleep and their toddler brother or sister would wake them. But I think it's important never to embroil them in solving the problems around the one with the ED.

Really sorry lovewinter, my heart always breaks for those who are in the heart of the maelstrom of the early days.

Girlie, I wouldn't say FBT didn't work for DD in so much as I understand it (which I don't in some ways as the way it was presented us during lockdown was so vague and seems sometimes just to be a way of subcontracting out treatment). She was never hospitalised apart from two night s in A&E, so her refeeding took place at home with us, with occasional lunches (once or twice a week) in the clinic. So the refeeding therapy was family based. But it needed to be in tandem with more head stuff in her case - I disagree with the idea that they need to be a certain weight (say 85% or whatever) before they can benefit from therapy. And from going to school, sport, going out with friends for that matter. But I'll write something long and boring about our experience.

Yes Hillary I take your point, I think this morning when I read loves post the red mist descended and I was so angry on her behalf. For my dd if someone had sabotaged the refeeding plan in that way the results could have been catastrophic for her (and me.)

My dd is an only child so I've not had to contend with the added complications that having other children in the house would have bought and I can appreciate how difficult that must be.,

I think as always valley it depends on the child, I guess for some children their brains can still function at a low wfh. My dd couldn't engage in therapy or think rationally at all until she was a much higher wfh. She told me the other day she remembers brushing her teeth without toothpaste at one point because of the extra calories 😕 any amount of therapy wouldn't have helped when her thinking was that broken sadly. She just needed lots and lots of calories.

Plus now she is a higher wfh generally (other than the normal teen angst) she is in a good place, enjoying college, socialising loads so doesn't actually need any therapy.

Thank you all for your help and sympathy I can safely say I was also fuming, An D is not talking to me and is still refuse to touch anything I make so that means another day of very minimal calories and she was doing so much better the last month.

I appreciate everyone’s concern about her restricting but while I will never let my guard down I honnestly don’t think she is, she has eaten chips, vegan nuggets, plenty of nut butter, vegan ice cream etc I believe the extreme reaction was I think due to anger that she can’t do something because of her sister and I do feel her she has suffered lots with holidays cancelled, embarrassed at restaurants, hasn’t gone out for a family meal, had to stay at grandparents sometimes while we stay in hospital with An D, I think she finds it hard to separarte her sister from the illness.

My daughter are 13 year old twins, 15 and 16 (17) in two weeks they are all effected so much and it is very hard to see but I do feel very sad that she would do that knowing full well the consequences

Four teen girls love?! I take my hat off to you, that is a lot of hormones!!

What sort of wfh is your eldest at the moment? If she isn't eating the food you give her can you take her to a&e or talk to the ED team? I would pretend the outburst hadn't happened and just keep going as before.

Hi, just wanted to share these free podcasts, they are so supportive when you are struggling as a parent of a person with an eating disorder. And great tips for how to approach the whole thing.
Harriet Parsons talks with Jenny Langley for about half an hour and they give great tips and coping strategies for parents.

If you google The New Maudsley Carer Skills Podcast
you should find them, there's 8 so far I think in the series. They are on a few podcast platforms I think...

Just might help you fight another day when you think you can't fight another day.

Jenny Langley wrote a book about her son with an eating disorder and since has become a faciliator and trainer for parents/carers.
My DS had eating disorder behaviours and my DD has social anxiety and the podcast tip really help me manage my approach with both of those.

@Seaweed42 - Thanks. Just listening to number 8. The DEARS principles are really helpful.

Yep 4 teen girls, the house is definitely full of hormones! which often doesn't help when anorexia is added to the mix of normal teen girl drama.
She was 83% WFH last week up from 72% however she has not eaten more than 500 calories for the last 3 days now. We went to A&E yesterday just to be told is she ate the kitkat she can go home and given all she had that day was an apple she ate it.

Thank you for the podcast recommendations, I have already done a maudley course but I will look at the others

I'll check out the podcast too. Thanks.

We haven't moved on a lot weight-wise, small gains are better than a loss though, but dd seems mentally stronger so some nutrition must be getting through to her brain. She's much less involved in the kitchen and shopping so I feel more in control. Meal times are getting easier and feel more 'normal'. We watch Friends in comfortable silence. She has a pudding now, usually just a yogurt but she had a bowl of home made custard with berries last night which felt like a big breakthrough. Camhs keep pushing for quicker results and but I can see that I'm going to get better results here at a slow pace.

Why that's great progress, well done. Ignore Camhs this is not an illness that has any quick fixes sadly.

Love that's frustrating re a&e, have you got any other leverage you can use? Does she go to college?

My dd is up and down but I think it's more normal teen stuff these days, Ystd we had tears as she was worried that she hadn't made enough new friends at college. Today she's happy and planning meeting up with new friends tomorrow- it's very hard to keep up!!

As a by and by do the rest of you have conversations with your dds that go something like this

D - you know Jen?
M- no you've not mentioned a Jen..
D - yes I have I've talked about her loads
M -
D - you know Jen, Jen who has pink hair and went out with Toby once...
M- umm
D - well anyway <tells me some random fact that also includes at least 3 other names I can't remember>
M <zones out>

😵‍💫😂

Whyisthishappeningtous well done that sounds really positive, often I find the smaller changes mean more, even if its just having a different brand of bread with a sandwich or having a meal and not taking what seems like 100 bites for a bite of chicken but instead 50 ahaha Also I emphasis about CAMHS pushing for higher pace but I have always argued I was rather it was slow but sustainable plus there is no one size fits all obviously ideally I would like it to be all over, but they make it seem really easy to get them to eat and gain weight each week so when they told me off for celebrating a tiny gain one week I said why don't you try and get a larger one !

Girliefriendlikespuppies she was at sixth form but was signed off by CAMHS so hasn't been in over a year now. The only leverage I really have is the dog as she loves our dog but she is not allowed to take him on a walk so I feel evil saying she can't even have the dog with her, which is hard anyway as he follows her everywhere.

yep I am glad I am not the only one having those conversations ! I also have the "I am at Kates" baring in mind a week ago she came back in tears stating how awful Kate has been and how she is the most awful person ever! I said "didn't you fall out" the reply was " no that was last week!" it is so confusing keeping up !
I recently got told off as I planned a surprise party but invited two people who used to go out with each other and now can't be in the same room (which was just meant to know how exactly 😂) so I then just removed them from the invite list but apparently I can't do that as now so and so can't go or x will think we like them more 🤦‍♀️

Although saying that I wish more than anything my eldest was rambling on about this to me instead of isolating herself and crying over food

Yeah I know love I can remember when dd was either crying about food or completely mute. Listening to her chattering away now is lovely and I definitely appreciate it more because of the contrast to 18 months ago.

Can you offer your dd any incentives to eat? The promise of a short dog walk or trip to a favourite shop? I used a lot of 'when and then' with dd early on in refeeding so 'when you've eaten that then we can <some nice activity she usually likes>

I think you will also need to rock up in a&e every single day she eats less than 500cals. Are you on the fb group? They have some useful a&e files including what tests you can demand they do before they discharge her (I don't believe any of the tests involve eating a kitkat 🙄)

Does anyone have experience with sen at school for their DD. Mine is in year 11 - she missed a lot of school in year 10 and her grades have fallen. I have arranged a meeting with head of sen tomorrow and would like some pointers as to what to ask for and what to expect: extra lessons, more time for exam sitting - I really don’t know? So far the school has gone above and beyond supporting DD and continue to provide extra resources to help her. What should I ask for?

D1ANA22 my Ds school have also been amazing, but we didn’t go through SEN each of her teachers reached out to me to ask what they can do but they all gave one to one lessons even she she is not in school like now they do it online or we drop her off for the hour etc. They also didn’t give her any deadlines but were very responsive when she submits work in and give feedback quick. They also are guided by her at how much she can do etc. They didn’t ask her to do end of year exams she had the choice if she wanted to and there was no pressure she did most tbf and she was given revision sessions before hand. She was also given permission when in school to leave at break and lunch and also she didn’t have to explain each time she had appointments etc I just emailed in advance. Also She has weekly meetings with head of year to asses if anything more can be done to help her. I hope that helps a bit

Sorry should clarify she gets 1 to 1 with each teacher once a week regardless but then if she has any questions or needs extra help they normally do it over their lunch time with her or after school so normally has two one to one sessions a week per teacher

@lovewinter the school support for your DD is amazing, a great school community - not sure we’ll get anything like that but it does give me a wish list before my meeting, thank you.

My DD's school have been amazing too. She missed the first term of y10 almost entirely. They provided her with the lesson notes and any work but she was told she didn't have to do any of it if she wasn't up to. Mostly she didn't. The head of year kept stressing that we weren't to worry about academics, they'd sort themselves out. We were a bit sceptical but decided to go with it and they were completely right. She caught up and then some once she was eating OK (and only OK, she was still low weight). The rest of the year she was missing at least two afternoons a week.

To generalise massively, often the very characteristics that makes some girls prone to anorexia are the very things that make them academic high achievers. Of course not always etc, etc, but in DD's case, she's very conscientious. Her revision notes are works of art, like the anorexic brain on a page.

The school also suggested that she apply for rest breaks in exams - not extra time, but little ten minute breaks every hour if she wants them. Although she's much better, this will be in place for GSCEs. We got a letter from the psychiatrist for this.

She also decided to drop a GSCE, art, because it was stressing her. She's still doing 9 and will likely do further maths, so it's more than enough. I'd have been happy for her to drop another.

Oh the other thing was that the teachers really love-bombed her too. Parents' evening was full of praise even from teachers who'd barely seen her. I think they'd been told to do so.

Oh and we never had any hassle about attendance either.

We couldn't fault school in support for Dd - although in the end she left before A-levels. She was in year 12 when she developed anorexia, her HOY was fabulous and very supportive. She stopped Year 13 before Christmas and was off roll for all of that year. Restarted year 12 (timetabling meant she couldn't restart year 13 and as it turned out it was all too much for her anyway) and then left.

Adjustments made - accommodating her on/off roll; free access to HoY office whenever needed, if it was too much/she was too tired she could leave, extra time in assessments, DD was/is a perfectionist and when she tried to go back to school she had ED related anxiety coupled with concern about not being as 'good' at her subjects as she had been pre ED. School were happy for her to not do essays etc to deadlines others were meeting and DD was able to do an essay plan/first few paragraphs and then get feedback as attempting an essay was just too much. Then some practical accommodations - DD had a really tough time reading text on white backgrounds (the words were all jumping around and the whiteness was too bright -an unexpected ED gift) so they provided her with cream coloured paper when needed etc.

Even after leaving they offered DD to access their on site counsellor.

However, despite all that the school environment was where the anorexia was strongest - there was (as to be expected) a lot of diet related chat amongst the girls (was an all girl school) and the anorexia would leap upon anything - the chaplain gave an assembly at the start of lent that sent the anorexia into a headspin (they did apologise for not joining the dots before that assembly). I know she'll find her own way in the world eventually but it does make me so angry how much damage this illness has done to her in so many ways.

(sorry for moan fest at the end there!)

That all sounds very frustrating @myrtleWilson it affects so much.