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

Why remember feeling exactly like you are describing, it is relentless and soul destroying. I developed a nervous tic when dd was really unwell which I've never had before.

All I can say is put all that despair and anger at the unfairness of it all into Mekong every single mouthful count. I took some comfort in knowing that I could pack as much into school mouthful as possible.

Getting the weight on them makes such a difference to some of the more irrational behaviours and thoughts. Dds fear foods literally disappeared overnight when she got to 98%wfh.

I've let dd go off to a party this afternoon against my better judgment, it is all the normal worries about teens plus the worry that she won't eat enough 😕

@Whyisthishappeningtous you are at the beginning of a journey that you didn’t want to go on and it’s probably the hardest thing you ever have to deal with. At the beginning someone said to me that there are no reasons why things won’t get better - and they were right.

It’s a long slog and heartbreaking - but your resilience will get you through the hard days. You will cry to yourself, despair and look for reasons - but don’t waste energy on the ‘whys’ but put that energy into fighting the eating disorder beast. 9 months ago our DD would not eat a rice cake, she has just now eaten a thai green curry and chocolate dessert - it took a long time to get here and you are at the worst point at the beginning. We have been sworn at, kicked, spat at and even had the police at our house when DD wrecked it. Things aren’t perfect now but they are a lot better. No-one tells you about this side of anorexia unless they have been through it.

Wishing you the best and thinking of you and your family - with food it does get better, food really is the medicine.

@Whyisthishappeningtous it's so tough. It really is an unrelenting slog. There is no way to sugar coat it. The weeks with no weight gain felt utterly bleak for me... like all my efforts had been for nothing.
Food becomes all consuming. And it does feel intensely claustrophobic. You live from meal to snack to meal, sigh with relief once it's all eaten for the day and then realise you have to do it all again tomorrow.
But as the others have said it does get better. Food and time are the only things that help.
Your DDs inability to even eat a malteezer sounds v familiar and it is the small things that sometimes push one over the edge. The sadness I felt in June last year when I found all DDs chocolate money from Xmas on her desk was almost overwhelming.
It sounds to me like you could do with building in a small amount of you time.
I get that it's hard to do but I think you need to. Can your DH do one meal or snack this weekened? So you can have a block of time out? Sometimes I did that for one snack knowing it might impact weight gain but I needed to for my sanity. I would go for a walk or meet a friend or have a bath and it did help.
You aren't alone and we all understand. Come on here whenever you need for a rant!
Thinking of you. And knowing you will win this war

@Whyisthishappeningtous I wanted to add to @Lottsbiffandsmudge comments with my own experience.

1. food shopping is hard and provokes anxiety - will she eat this, how many calories in that etc as you walk around the shop. You’ve done absolutely the right thing by planning meals - I am back at work and when DH is responsible for dinner I worry as he’ll say ‘we’ll see what’s in the freezer’ - having a plan eases that worry for you and DD.
2. You’re DH sounds like a patient man. DD’s anorexia has made me and DH closer as we discuss how to manage day by day and petty arguments have disappeared - we have a bigger worry.
3. Eating together - I’m afraid that the eating disorder is looking for some control and splitting the family at eating time is it’s ritual. Easy to say but try and break that habit. DD would kick off at the dinner table when younger DS wasn’t there. We firmly said that she doesn’t do that in front of DS and effectively bullied the eating disorder - mealtimes went smoother when DS was present as DD ‘knew’ she had to behave.
4. You are naturally full of worry - I read advice on this thread to have sometime to yourself in the evening so that the whole day isn’t consumed by anorexia. Watch some mind numbing programme on Netflix and try and turn off before bedtime, as you say it all starts again tomorrow :(
5. I’ll share my early experience, my GP prescribed me sleeping tablets and antidepressants and they worked for the short term. I take neither of them now but they did help when I was in shock of the illness. You may want to speak to your GP.
6. This group provides strength. People ask me if I’m getting support for myself - I did use a therapist but that didn’t work - the support and advice from MN is all I need.
7. CAMH visits didn’t work for us, DD hated them and after a few weeks it was apparent that we are really on our own.
8. Since DD was diagnosed I am aware of 4 people in my outer friend group whose DD’s are now suffering from anorexia. The anxiety of the pandemic has quadrupled eating disorder referrals to the NHS - I blamed myself for months until I understood this.
9. I am a nervous person but even I have developed a resilience over time. It is hard to wake up knowing that you may be having a confrontation over something so mundane as a glass of juice - but to DD that is her torment so I remain cool and calm and don’t negotiate. And if it doesn’t work move on and do the same the next day until it does work.

Unfortunately there is no silver bullet to tackle the illness, food and time are the healer. Reading these threads I can see it does get better - it has got better for us, please take strength from that.

@Whyisthishappeningtous it is such an isolating disease for our children and us. Even my closest and most supportive friends and family don’t understand the relentless merry go round of food, eating/not eating, distraction and distress, not being able to socialise or even go out. It is emotionally exhausting and so difficult to see our children struggling. I am not far enough down the line to offer experience but I am with you in the midst of this horrible experience we never expected for our families.

My dd will now eat meals (a very limited selection) and snacks (only digestive biscuits) but any food outside of those set times she would not touch - she wouldn’t eat a malteaser either - or indeed a piece of popcorn that I offered her yesterday.

I agree that you must make time to look after yourself. My Dh is not coping at all, panics and then shouts at dd. He can’t support her unless I am there too. His parents are lovely but just don’t get it, so my mum came to stay for a week. I trained her up and then left her in charge for 1/2 a day while I met a friend for lunch and window shopping. It was more exiting than a summer holiday usually is and incredibly necessary. Dd was difficult but my mum was able to cope and said she was relieved to able to help me.

@bringmethehumous glad to hear your DD is eating meals and limited snacks.
My mum was amazing too. We were in lockdown 2 at the worst and she was in our bubble and able to visit once a week to manage morning snack so I could attend an on line Beat support group.
It wa so helpful to me to talk to people who were also in the same place. Everyone off loaded in turn and shared best practices and we had carers and different stages in the journey which helped. There was no judgment. And the facilitator was helpful and had good ideas.
I do recommend the groups.

You're all so lovely. Thank you! Your words are like a soothing balm. I felt really rotten last night (thought the covid might be back) so I had an early night and didn't wake up until 8am. I really needed that good sleep.

Feeling much brighter today. I sat with my coffee outside in the sun and ordered some lovely hand cream to try and help soothe my poor fingers and stop me picking.

I'm doing a roast dinner today for the first time since Easter, but am tailoring it towards dds preferences so she'll feel comfortable with it - a plain chicken breast, potatoes sprayed with oil and roasted in air fryer, lots of veg, a mini yorkshire pud and gravy on the side. I plan to do it every Sunday if she's happy today and try to add a bit more into it each time. It's the meal she says she misses the most but is most scared of eating.

why humous and any others who are at the start of this journey - I just wanted to echo others comments. It is so isolating and domineering and it saps your energy and resilience to their core. Someone mentioned feeling like you're going into battle - it is like that and those in the armed forces use a phrase like "battle rhythm" - you'll find yours, you'll find you have deep wells of capacity to go again. You'll break down but manage to pick yourselves up again. You'll cry and its okay, it is important to have those moments of release - be it crying or a scream.

You mentioned why that you can't go anywhere.. my DD liked going out for drives in the car (sometimes as a distraction after eating, sometimes we'd go out for a 2 hour journey into the countryside and she'd have to eat). Also, we realised that being in public - going to the beach or window shopping, DD was able to regulate her behaviour. For all the self harming etc she did at home, nothing happened outside of the home - would thinking about it though that lens be any help to you?

myrtle thanks. We have been on some drives, dd loves that. There's a big garden centre around 30 min drive away that has a costa coffee so we've been driving there for a little look around and a coffee - mostly taking it back to the car, but if the cafe is quiet we sit in there, which is lovely. I'll suggest a drive to the coast, now it's a bit quieter at weekends she might be more receptive. She hates crowds, actually we both do but that was before ED anyway.

We can't visit grandparents or other family though and they can't visit us, which is really hard.

I guess it's just a case of keeping on with what we can do and not dwelling on what we're missing out on.

It is so hard why and the emotional toil is huge, at the start of this ED journey was definitely the bleakest and most hopeless I've ever felt.

I still get times now of feeling frustrated, usually when dd does or says something that is ED led but those times are much much less frequent now.

I remember one Christmas when we were in thick of it and I told dd to eat a chocolate from her selection box and the look of terror on her face broke my heart. I still get emotional thinking about it now. That was also the Christmas that I had to follow her round the house as she held a mouthful of juice in her mouth for ages and then dribbled it out.

Thankfully we are more or less out the other side now although dd still has a few ED rules and rituals she holds onto (leaving food on her plate is the main one now).

Good plan re the roast dinner, I hope she does allow herself to enjoy it.

Any of you with older dds had to navigate contraception and EDs?! I think I need to sort some contraception for dd but am worried that they will want to weigh her and also whether going on the pill would change her appetite possibly?

I know that this app is for parents, but I am 14 and I need the advice of everyone here.

I have an eating disorder. I have had one for 3 years now. Never been hospitalised. Tried to recover so many times. Tbh I am surprised my health hasn't been completely destroyed because it is pretty severe.

My parents know and my mom keeps asking what she should do. I know it isn't my job to support them, but I want to make them feel better. They can't change anything; it is my journey only. But I want them to feel useful.

If I was your daughter, what would you want me to do? What would you want to hear? How can I help make my parents feel less powerless?

They keep asking what I want from them and I don't know what I want. (Also if you have any questions for me feel free to ask. Again, I know this website isn't for teens but maybe I could try to help you understand some things).

Diana** are you being cared for by Camhs? I don't think any of us can tell you what to say to your parents, your parents hopefully have some real life support and professional guidance.

I'm sorry you've been struggling for so long.

@dianatandy I'm sorry to hear this, it's really hard. I would point your parents towards the Beat website where there's a whole section for parents. I'd also think about showing them the book by the Maudsley team, I think it's called Skills based learning for carers and parents of those with eating disorders or something like that, you can look for it on Amazon that's a very helpful book for them to read and get some ideas of how to help you.

You can also use Beat yourself for more support, I've called their helpline and they are fantastic both with information and just giving some emotional support at difficult times.

www.beateatingdisorders.org.uk/

Hi everyone sorry I am a long time lurker but think you are all amazing and have name changed for my daughters sake, but I wanted to share that my teen D had anorexia for 4 years and we went through hell as you can all imagine and sadly can relate to but after a year of no eating disorder issues I think she is recovered. She still needs lots of help with her mental health due to having autism and anxiety but eating issues we seem to have left behind (I hope) and i asked my D now she can reflect what helped and what didn’t so I could share with you obviously no one person suffers the same as the next person but if it provides any help I thought it would be worth it.

1. stress to your child you want them to fully recover and physical weight restoration is only the first step of a long journey but you will be for them until they are fully recovered ( basically let them know that you are prioritising mental health not just weight restoration )

2. never don’t offer them or try and persuade them to have the ‘most challenging foods’ even if the last 6 times you offered this food it was refused even if last time it was offered there was a 6 hour meltdown because deep down she was looking for reassurance it was ok to eat her favourite foods by catering to her preferences or giving her safe foods it was just reinforcing what the eating disorder was telling her. Even if they don’t end up eating it regardless of what they say such as can we not start with just with one sausage or can we just have boiled and build up to roast potatoes deep deep down they want you to fight them on it.

3. never give up on their ability to fully recover well even if you personally do don’t reflect this on them tell them again and again they will and can’t beat it

4. telling them you love them as much as possible I know at times I absolutely despised what the illness had made her into but hold on to your child and try and tell them you love them so so much and can see them in there and are fighting for it back but even if you have said 10 times or you have had a massive argument the same goes with recognising how hard they are trying

sorry that seems really bossy it’s not meant in that way I just wanted to offer any help if I could

Sorry meant to add if you have any questions then I am more than happy to answer or ask my Dd

Thank you @Morningperson101 - this is really helpful! Very glad to hear your daughter is doing so well now.

Can anyone help with periods?

Even If bleeding has stopped, is it possible dd is still having the hormonal swings? She gets cramps and headaches that she usually gets with her period and her mood and self esteem plummets like she's due her period and rights itself again a couple of days later as if she's over the worst of her period. No bleeding though. This is definitely happening on a cycle (alongside mine!). Thanks.

Why yes definitely, my dd was the same with hormones but no periods at the start of refeeding.

Thank you! We were quite surprised last night as bleeding started, very heavy and crampy. It's the first one that's she's actually bled for about 3/4 months. She's still hovering around 80% wfh. Her mood is better today and said she's very hungry and she's eaten a couple of small biscuits and an extra cup of milk off plan. I'm wondering if it's come back because she's eating more/healthier, even though her weekly weight gains are still very small.

I do wonder about the wfh in dd's case. We're quite a small family. Dh mum and all his aunties are tiny but eat very well. Dh and his brothers are small too.

@Whyisthishappeningtous Such good news about your DD getting her period back! An HCA terrified me on my daughter's first hospital admission talking about premature menopause. My DD has had two periods back now (I was sobbing with relief at the first one!)
@Morning Thanks for sharing! It always cheers me up to read stories of recovery. My DD - to my surprise - agreed to pesto roast veg with her Buddha bowl and honey in her hot lemon (rotten cold with sore throat) yesterday, so seeing some progress.
My big news is that DD gained during her first week back at school, so it looks like she is managing to eat there without supervision. Yay!

Dianatandy - that's so sweet of you to be so concerned with helping your parents but you need to concentrate on yourself - that's what will most help them. Having said that, looking after a child with an ED can be the most thankless task in the world so saying thank you and telling them that you love them would really help.

Whyisthishappeningtous - I'm in the process of writing some biblical length reflection on what's worked for us (it's atypical so it might be useful to others) but one thing has been having to throw out 100% WFH. For us, periods have been a much better indicator of health. And they track intake far more than weight. DD lost her period at 46kg having lost 2kg, she got it again at a much lower weight (43kg, having gained 3kg from her lowest).

I would say she is mostly recovered (with caveats and wood touching and fingers crossing) and is still less than 85% WFH. However, she's always tracked 75% for height and 25% for weight and that's what she is now so I think she's where she would have been if all this nightmare hadn't happened. She's had regular periods, every four weeks, the whole of 2022. I know others disagree, but I do think WFH is a very blunt tool and we'd be fighting a long battle to get anywhere near 100%.

ps DD's weight gains were minuscule. I'd be amazed by other posters saying things like 'disappointed, she's only gained 1.5kg this week'. 500g would be enormous celebrations in this house.

DDs periods stopped for 18 months. We had appointments with a gynaecologist who said nothing to worry about (after blood tests) and there's no harm by then not having any. Their hormones are still there- and we knew it with dd

Hello valley that's a nice update, I have wondered how you and your dd were doing, glad to hear she's doing well. I totally agree re wfh being a blunt tool, my dd was desperately unwell at 90% wfh, heart struggling, periods stopped, hair falling out etc so she needed to get over 100% to get back on track.

I think it's a useful indicator but you need to know where your child generally tracked pre ED to know where they need/should be.

I do think you have to push them a little bit over where they would naturally be is needed as well, at least initially.

Is your dd eating freely now?

We're still in a weird limbo land here where dd does eat well but still doesn't eat freely 😕