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

Hi,

We managed to eat out at lunchtime yesterday for the first time in ages. Dd chose from the kids menu but tucked in and enjoyed it. It was so nice to be out and surrounded by other people eating and enjoying themselves. She's asked to go again so I'm really pleased.

She keeps walking around and around the house and the garden in the evenings. Dh and I take it in turns to interrupt her and distract her.

Hi all,
Hope you’re all doing well and your dcs are eating.
My dd16 is eating well now within a narrow range of foods as long as we are sat at the table and I am supporting and distracting her. Any new food or change of routine and she has a meltdown. She is putting on weight in line with her therapist’s plan but he and I agree that she isn’t yet ready to move on from the stage of FBT we are in - as in she has no control or autonomy over food and eating.

She is also very nervous about her results tomorrow as she sat all her exams at the height of her restricting and barely stayed in a single exam without having numerous panic attacks. I look back and can’t believe I missed how very ill she was. We have no idea what she is going to do as she is not ready to go back full time and we don’t even know where she would go! I have decided - with the support of her therapist- that I am not going back to work in September (I absolutely love my job and it is my sanity in many ways as well as being extremely exhausting, demanding and having some tricky staff politics). I haven’t told my Head yet and don’t know how we will work it out but I don’t have a choice my dd needs my support and I can’t do both jobs well.

Does anyone have any experience negotiating taking extended time off to support a dc with anorexia?
best wishes to everyone x

Why that's great your dd ate out and enjoyed it. Those little glimpses of normality are so nice to have! The pacing would worry me a bit as it will be to do with exercise and burning calories so yes to distracting her. I know some parents put their kids in the car for a drive after meals to get them to sit down! Otherwise things like watching films, playing board games etc might help.

Bring well done on the weight gain, I know what you mean about the results. Between school missed due to lock down and the brain malnourishment due to the ED it could easily go either way for dd. Have you looked into claiming benefits for your dd? I think it's DLA although if she's 16 it might be PIP?

Thanks @Girliefriendlikespuppies she has done really well putting on weight - only 1 week where she hasn’t. We can apply for PIP (16+) once she is 3 months on from diagnosis so have to wait a few more weeks.
@Whyisthishappeningtous it is fantastic that your dd are out! I can’t imagine mine doing that ever again at the moment. We always distract for a long time after meals - games/puzzle on the go always/crochet as that is when dd finds it hardest - she wants to go to her room and self harm - bruised her head last week banging it on the wall - so we have to supervise her at the moment.

Dd passed all her exams! Really pleased for her and relieved, she's done so well given how crap the last few years have been.

Took her out to lunch at Hubbox to celebrate and forgot to ask for a calorie free menu 🤦‍♀️ she managed okay but refused a snack because of the 'million' calories she had 🙄

I bloody hate calories on menus so so much.

Hi everyone just popping in . Well done @Girliefriendlikespuppies ! Such good news. DD1 got a nice little clutch of accreditations (she's not at GCSE level for most things) and a Grade 1 GCSE in art.

@bringmethehumous you can apply for PIP before the 3 months is up (and I'd recommend it because of the huge backlogs). When they award it, they'll just apply the claim date from 3 months after your DD had the ED. Also, it's 3 months from the condition starting, not 3 months from diagnosis.

Thanks for the info @Lougle it’s really helpful to know. Congratulations to your dd and to yours @Girliefriendlikespuppies !

I am in shock as my dd also passed all her GCSEs. An incredible achievement after the disruption and the horrible year she has had.
She’s not ready to celebrate with going out so a friend came over for a while and we are now binge watching her favourite teen series.
We’ll think about the next steps tomorrow…

Congratulations @Lougle @Girliefriendlikespuppies and @bringmethehumous for your DD's fantabulous achievements and I wish them all the very best in their own personal next steps.

DD is home from Barcelona, she is happy healthy tanned and tired - just as a 19yr old should be. Am immensely proud that she navigated a self catering week long holiday and really enjoyed eating out and bless her heart spoke Spanish whenever she could. DD10: Anorexia 0

Yay to everyone who has done well! Eating out is a huge step as is going on holiday. Or having regular meals. We have to celebrate the wins for sure (some weeks it feels like there will never be wins again!)

Dropping in to say well done to those with DD’s who navigated their exams in summer, that is a huge achievement in unbelievably difficult circumstances. Also hello to those who find themselves on this board for the first time - sorry you had to find us. I have found solace and good advice from Mums going through these tough times and comfort knowing we are not alone.

Hope everyone’s day goes OK.

A HUGE well done on the exam's and holidays! It's lovely to hear such positive news.

So, we are still relatively new to this and I'm at the head spinning stage trying to make sense of it all. We've had a couple of appointments now with camhs. Can I ask about experiences with them? The team are lovely and she's happy to attend. However, it feels like they're not listening to us and we feel flat afterwards. Dd eats, obviously not enough, and she has her rituals and times she needs to eat, but she looks forward to meals, loves shopping for food, cooking and trying new recipes. Camhs said this needs to stop completely and I must shop alone and cook everything. It's causing conflict and distress (for both of us!). Maybe I'm completely stupid and very naive but is this really the only way to help her? Is there a way to combine me having overall control but her having some automy, or is that only going to 'feed' the ED thoughts? Her weight seems to be stable at the moment, she's 80% wfh but she's obviously ill and lacking energy.

I'm just so confused by it all. My instinct is telling me to build on her love of cooking, but am I living in cloud cuckoo land and that's the completely wrong way to deal with it? I'd love to hear others experiences in these early stages and what pitfalls you fell into or what you wish you'd done differently.

So grateful to this thread and the amazing supportive group of people here ❤️

@Whyisthishappeningtous I am very new to this and don't have all the answers, but one thing that has helped me this past week (as well as the very understanding answers on here) is to get better informed on the Maudsley approach, there's a book on it you can buy online, and I've also downloaded on the advice of another parent who has trodden this route, the NICE guidelines. I have found the book very useful (and not quite what was translated to me by CAHMS if I'm honest).

www.amazon.co.uk/Skills-based-Caring-Loved-Eating-Disorder/dp/1138826634/ref=sr_1_1?keywords=maudsley+eating+disorder&qid=1661533958&sprefix=maudsley+eatin%2Caps%2C67&sr=8-1

Hi all well done to all the exam takers!
@Whyisthishappeningtous I am afraid the answer is as CAMHS suggest.
At 80% wfh her ED will be very much in control. The cooking and shopping are a way for it to remain in control unfortunately.
It's very common for sufferers to act this way. The ED will seek out the lowest calorie recipes and healthy food options. And that's not what she needs right now.
I found it really hard to effectively ban my daughter from the kitchen and the shops but it had to be done. It was when she went ballistic over my buttering her toast that I realised she was really ill.
So I agree with CAMHS until she is in a much better place. A lot of fbt feels very alien and against your parenting instincts...

I echo @Lottsbiffandsmudge - keep DD out of the kitchen and not to go food shopping with you. When DD was not eating we naively thought her buying and cooking food from hello fresh would encourage her. It’s the opposite, it’s like training a badly behaved dog, you have to be strict and confident - this is it now, no negotiation. We would not allow her in the kitchen or cooking or serving, her plate of food would ‘appear’ on the dining table and then we would call her down - she cannot be involved in the food decision making as she will make all the wrong decisions.

I found DD was initially hostile but soon accepted my rules and still does, you have to break them in - tough treating your DD like a toddler but it has to be that way. The eating disorder is sneaky and will try and negotiate wherever possible.

And you asked about other pitfalls.
My biggest mistake was trusting my DD whilst she was ill. She was totally untrustworthy in many ways. Which was very out of character. She would barefaced lie to me.
She would hide food, bin food, secretly exercise, lie about meeting a friend to secretly exercise. Etc etc. It tool me a while to suss it out as she has always been a great kid. But the ED made her lie. Such was its control. I cannot imagine how hard it was for her.
Now she is recovered she cannot remember lying to me. She was really not there as the ED had pushed her so far down and calories and fitness was all she could think about.
Hence removing their ability to control the calories. It's so v hard for them. Distraction is your friend.

Thanks so much

FarFarFarAndAway
Lottsbiffandsmudge
D1ANA22

You've helped so much to clarify exactly what I need to do to help dd. I just need
find the strength somehow to tell her im in total control. I'm so anxious about the inevitable meltdowns and her completely refusing to eat.

I had to cancel a short trip we'd planned this weekend as it involved a fair bit of travel and walking which she can't do,
plus trying to get her to eat would be a nightmare. She's upset and absolutely fuming with me and says she never does anything fun. I felt like shouting at her 'That's because you won't eat!!' but I kept calm. I feel so guilty that I feel like shouting at her. It's not her fault. What a shit illness :(

@Whyisthishappeningtous my dd was exactly the same. During the first lockdown I was still working full time so really grateful to her for doing all the cooking - she was the gcse year that got cancelled - but hadn't realised it was all about her control.

Why you definitely have to keep them away from the food prep and decision making, I also discovered the hard way that allowing any participation in the kitchen led to massive arguments and stress.

They have to relinquish the control and you have to take it. My dd is over 100% wfh now and made some carrot cakes this summer which is the first time she's baked in two years! It's still not something I encourage tbh.

@Whyisthishappeningtous the start is the hardest part. Because as yet you have not called the ED out. It is still in control and so not too rattled. Once you do so it will kick back hard and try anything ro make you change your mind. You have to be stronger than it.
When you lay out the new ground rules I'd say something like "after the professional advice we have had and after my own research we need to make changes to help you get better. So from now on I shall do the cooking and food shopping." My DD valued the scientific advice as it gave her ammunition against her ED. All sufferers are different tho, my DD was driven by her fitness and healthy eating rather than body shape and this evidencr based reasoning helped her.
Be unemotional and totally unswerving in your quiet determination. So when your DD tries to counter argue just say something like " you are ill this is what i need to do to help you get better" repeatedly.
When she melts down you have to just allow it. Live through it. It's a technique called distress tolerance. Learning that part of recovery is being distressed helps. She won't recover without you poking and challenging the ED and when you do she will get distressed. My DD was violent, aggressive, hysterical, distraught. You have to learn to let them have those feelings. It's a response to the extreme anxiety. Others on here have much more experience with self harm if that happens too.
Allow the emotion to work its way out. Say v little except " I am so sorry this is so hard for you" or "I can see how hard this is" and sit there quietly. Verbal reassurance doesn't help, physical presence does even if they say it doesnt!. Even if i was sometimes only present tbeough a slammed door!. Protect her physically.
Distract. If you have her father at home rope him in to do stuff with her whilst you cook and serve food (or vice versa). Go for a drive, watch TV etc etc. Then she sits down to her meal. If she is there at the serving part her ED will be screaming at her and she is even less likely to eat. They need the ignorance of what's on the plate. It won't feel like that to her but it will help.
Also distract during the meal: TV, games, puzzles, chat about anything except food whatever works for her.
And sorry about your trip. But the reality is an ED makes you housebound for a good while, there is no flexibility really around food. So we had set meal and snack times and stuck religiously ro them. This again helps them deal with the anxiety.
I am so sorry you are here. The harder you hit this and the quicker the weight goes on the more likely a full recovery. Which is possible. My DD is back to normal except for defaulting to the lowest cal option when eating out (thanks government for cals on menus.... not).
It took us 18m and that's quick. Be prepared for the long haul.
Sorry that was v long.....

@Whyisthishappeningtous I totally agree with what everyone else has said.
Distress tolerance is key. We were really worried about upsetting our dd as she has been hospitalised for attempted suicide before and the thought of her becoming distressed was awful. We are only a couple of months into FBT but are already rarely seeing the anger, violence and self harm of the first few weeks. Consistency of times for eating, remaining with (physically and emotionally) our dd plus distraction when she was eating all helped. Unfortunately Dh just can’t cope with dd’s distress so no longer supports at meal times but helps in other ways eg. Cooking meals. I remember thinking this is never going to work but we have made so much progress so far.

The most amazing (and unplanned) thing happened yesterday… dd ate a sandwich in the car whilst we were out!!!! First time she has eaten outside of our dining room. We were enrolling her at 6th form but the meeting with the lovely head of pastoral support (gently teasing and personal experience of a child with anorexia and suicidal thoughts) and horrible head of learning support (actually said I don’t think you can come here as we can’t support you!) went on so long that the enrolment had paused for lunch. We live a 1/2 hr drive away so couldn’t go home. I chose dd a prawn mayo sandwich - her favourite prior to ED and supported her to eat it in the car park - to distract from her high level of distress we took the piss out of head of LS and our take down of her. I have a glimmer of hope that she might actually be able to start 6th form now. This is the best place our dd has been in since returning to school after lockdown (admitted in meeting she hadn’t eaten at school since then either). Who knows what will happen but just maybe there is a chink of light …

Bring that's brilliant your dd ate the sandwich!! I know the first time they do something like that is an amazing feeling. The first time dd ate some crisps I cried a bit (away from her!) she'd always loved crisps (as do I) but when the ED started they were one of the first things to go.

Dd is away this wend with my mum and I'm enjoying a bit of a rest from it all, hopefully dd will have a good time as well.

I've definitely been guilty off avoiding conflict with dd at times and unfortunately I think that's why we're still here in limbo land two years later 😕 she is much better than she was but there's still a lot of rules and restrictions that go on. I wish I'd been a lot firmer at the start tbh but at that point I didn't have a clue what I was doing!!

Thanks so much. You're all wonderful here and it's giving me huge strength to know I'm not alone and to read all your advice.

I had a 'chat' with dd earlier who was under her bed covers the whole time. I explained about the importance of me shopping and cooking all her meals to help her recovery. She was very upset and just shouted 'NO' but I kept calm and kept repeating myself and I think it did sink in a tiny bit. I can see that calm, patience, repetition and continuity is going to be the key.

@Whyisthishappeningtous it is such a horrible illness - it seeks devastation and destruction and thrives on driving sufferers and carers apart so that the ED voice is all dominant. Hold on to the fact that your DC does love you and deep down wants you fighting for her until she has the strength to fight herself. People who had ED's in their teens have popped onto these threads as adults to reassure us as carers that they loved their parents all the way through but couldn't say so at the time.

Also, please don't be too hard on yourself. Calmness and patience is the key but unless you are a literal saint you won't be calm and patient all the time - we break down, we shout, we cry...sometimes by ourselves away from it all, but sometimes in front of our DCs - personally (unless someone is berating child all the time) I don't think it did my DD any harm to see me vulnerable and upset and angry - sometimes its those moments that pierce through. So, for the days when calmness and patience are a struggle - you're still doing your very best to fight for her - and howl at the moon on this thread whenever you need to

Does anyone else find the threads on here where posters encourage parents of teens to help them lose weight really triggering?

I know I just need to stop reading them but it's so hard when I know how badly wrong weight loss in teens can go 🙁

I wish there was more general awareness of the dangers of weight loss in teens and the link to anorexia, people don't understand it at all.

Yup. I can't read them. And my DD was not even trying to lose weight but just keep fit and be 'healthy' in lockdown. They are force fed that mantra by school all the time. With inappropriate calorie recommendations.
There is a general ignorance about the level of calories a developing mind and body with puberty thrown in needs. It's certainly not the same as those for an ' average adult'.
And an 'average adult' doesn't exist. I need far fewer calories now I am menopausal then I did before...not that I have adjusted my diet yet.