Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

@NanFlanders what a relief! Sounds like a long journey - I'm glad she is ok.
I hope your ds can concentrate on his exams - they're hard enough without other things to worry about.

Nan So pleased to hear you found DD. She really sounds full of spirit ending up in Scotland! You must all be exhausted. Sending love and strength to you all.

Nan** Scotland?!! Honestly your poor nerves must be shot to pieces!! I'm glad she's safe and I hope you're okay as well.

Dd came back from college really upset, she had an interview with college today and the teacher apparently bought up a load of issues that no one has mentioned to her before. Things like she's easily distracted, can talk too much in class etc. She's said to dd they might not let her stay for the second year, dds devastated, she knows she's easily distracted (I suspect she has the inattentive form of ADHD) but no one has discussed this with her until now.

We've both been in tears and I've sent a strongly worded email to her tutor asking for an explanation.

Ffs.

Girliefriendlikespuppies

Your poor dd. Surely giving constructive feedback and offering ways that she could improve in class is the first stage in dealing with issues, not just jumping straight to talking about chucking her out. Shocking 😡
I hope writing the email has helped you both feel better and hope you get answers from her tutor.

Wow Nan, she took herself to Scotland? I am so glad you found her.

Oh my gosh @NanFlanders terrifying for you. Glad she’s been found safe.

@D1ANA22 I really struggle with the independence and not knowing what she’s eaten/knowing that she won’t have eaten much and it gets me very stressed out (hence the lunch throwing). No advice really. I try to let her socialise for her mental health but at the expense of mine…

@Curlyhairedassasin my dd’s official meal plan is
B bowl of cereal with ff milk plus 2 slices toast with butter and another topping. Juice
S cereal bar and smoothie
L sandwich with butter and 2 fillings, yoghurt, crisps.juice
S milkshake and chocolate bar
D meal including carbs and protein. Cake and custard or creamy dessert . Juice
S hot chocolate and biscuits

however she’ll eat very little of that, doesn’t eat sandwiches or cereal or drink milk or yoghurt…She’s not typical anorexic as not trying to lose weight, just doesn’t eat. So she’s not scared of high calorie foods and her actual meal plan looks more like this

B fruit smoothie, almond croissant
S cinnamon bun/scone with cream, iced coffee
L bagel or wrap, cereal bar, rice pudding
S chocolate bar/millionaires shortbread + drink
D normal meal, cake/brownie/ice cream/custard/tiramisu
S give hot chocolate and biscuits but hot choc is never drunk.

Today if she ate everything she’d have had 3090 calories but she never does! Today has been pretty good so far as she ate all of breakfast and morning snack, almost all of lunch, didn’t eat afternoon snack, ate 2/3 of dinner and most of pudding. Hasn’t had snack yet.

Moom that sounds really similar to what my dd eats. She still won't finish anything which drives me mad, apart from anything else the waste just feels criminal when we're struggling on limited funds.

Her current meal plan is a bowl of strawberry granola with ff milk (a full bowl and she leave about 10%.)

Lunch a tuna Mayo sandwich, crisps and a cake or chocolate bar.

A cereal bar

Dinner - any normal dinner with as many calories I can shove in.

Pudding - large bar of chocolate, tiramisu, eton mess etc

She only allows herself two non water drinks a day, usually one is milk or juice and the other is a cup of tea or coffee.

I reckon it probably is around 2500 cals but would be closer to 3000 if she actually ate it all.

Bagpuss thanks I spoke to her tutor who suggested dd had got the wrong end of the stick and she has no concerns!! So I'm really confused, dd is adamant this is what the teacher said (different teacher to tutor) anyway I told dd to talk to her when she's next in college.

DD prepares her own breakfast, usually a sweet cereal with full fat milk. She sometimes adds honey.

Lunch was previously supervised at school, a meal and a dessert - now she has left school it is probably a pasty or something similar with a low cal fizzy drink or something - this is my concern about her independence.

When home she will grab from the snack drawer - chocolate or sweets, sometimes a bag of crisps.

Dinner she eats with the family and again something from the snack drawer.

In the evening she may get another snack, she has a sweet tooth.

She will eat all her breakfast and strangely if the meal is ‘dry’ say burger and chips she eats it all. If it is a stew or pasta she always leaves some, takes a bite and puts some back on the plate. My friend who suffered from anorexia 30 years ago still leaves food on her plate.

DH is relaxed about these food behaviours, I see it as the ED still hanging on but I don’t tackle this, we have come so far.

We don’t weigh anymore so are only monitoring DD size is visually - hidden beneath her baggy clothes 😔.

I always feel like I should be doing more, anything but I don’t know what and I live on my nerves, DH is far more relaxed about where we are at.

@Moomarre Thank you. Everyone seem to have a more ambitious plan. I will see the dietician next week. She was off this week.

DD's plan is about (I added the cals up with an online calculator) 2200 cals but I now decant the FF milk into the green bottle and sneak some extra butter in do recon we manage nearer 2300. She is eating all. every single bite. However, it is as if the ED is in total control still by not letting her eat anything else. She is gaining weight on the current plan but progress in her mind: zero. We really need to tackle that. She is at round 85%wfh (but she was never as low as many others here - it was her sudden extreme restriction landed her in hospital).

Can I ask about growth (height): DD (she is 12) has not grown in 9-10 months. She hasn't started periods yet. My other daughter was shooting up around that age. I guess it all slowed /stopped because of the ED. Once the restore eating, do they catch up? Or do they stay that short?

Dd is very jealous of her friend going on a big USA holiday in August and I said we could go too if you would choose recovery but we're not booking a holiday until you can eat freely without counting calories.

There's no way I want to be stuck in a self catering apartment somewhere trying to source and cook food that she will eat and spending my holiday time terrified that she'll not eat enough. Not to mention the cost of it all. She will also not sit by a stranger or be left alone at all. It is literally like having a baby. I have to put her before everything so what's in it for me?

She says she'll try her hardest and I'm being mean and selfish blah blah but even a short day out can be a disaster. The only place I feel safe caring for her is at home.

Curly,

She's doing so well. That's brilliant. I'm not sure about growth as my dd was 16 when she developed ED so probably almost fully grown. Her periods never stopped even at 78% she had full on heavy periods.

With my dd it's taking far longer for her brain to recover than the time it took her to lose weight in the first place. I don't think she will ever go over 100% as shes always had a slim tall build. We are hovering around 95% now and I see some tiny glimmers of her old self but she's s long way off being mentally herself. She's still very controlled by ED and counting calories. It's not generally a quick process for most of them and recovery isn't linear, lots of ups and downs good days and bad days, so it's just a case of keeping on top of the food going in and waiting for the brain to recover.

@Curlyhairedassasin my DD was just 13 when diagnosed, 12 when losing the weight. She didn't grow again until after full WR. She remains quite short and now she is nearly 16 not sure how much she will grow again. She was ill right over the period she should have shot up and we'll never know if it had a lasting impact on her height. She is a little taller than me whereas her brothers are a lot taller than their dad.
Her periods hadn't started prior to AN and again didn't until a good 6 months at a good weight. By which time she was 14 and a half.
We were just getting to the point when medics were starting to talk about scans when thankfully they started spontaneously.
All her puberty stalled. She had small breast buds but was stuck there for over a year.
It's tough if they haven't started periods before the illness as 'return of periods' is often used as a 'good sign' weight wise.
I started my periods at 14 so it's possible that was just her but again we won't know.
When they are so young there is so much at stake. But they also have the best chance of recovery. I would say (because we did this and it nearly broke me) to try to push the plan as soon as you can. Up the cals, the quicker they get out the better. It's hard and distressing but it has to be done. My DD ate 3500 kcals a day. She needed it. We got back to WR in 7 months from diagnosis (a year ish from the beginning of restriction) but that wasn't the end. Her MH slowly improved from WR onwards until I'd say we were 18m in from WR and I suddenly realised she was properly back. She had gradually improved over that period but it took this long to recover mentally.
And I would always say to anyone- go over what you think they need. My DD had always been athletic and slim. She got to 105% and we held there for 6 months. Not sure where she is now as we stopped weighing her (and she's grown) but I'd say bigger than she was before.
I had to also bear in mind that she started her illness as a child and ended the process as a woman. So her body shape would have changed anyway at puberty. So i could not expect her to look as she did before.
Being even slightly under weight and trying to recover mentally isn't going to work.

My dd was just 14 when she started restricting, her height completely stalled and her periods (which she'd had for about 6 months) stopped for 9 months.

It took a long time for both of those things to catch up, she started growing again at 16 and I'd say she's still growing now at 17, she's over taken me now!

Her periods took ages to settle and it was like she had started them all over again as they were all over the shop for months.

It's scary really bearing in mind my dd never went below 90% wfh and even at her worst was having around 1000 calories a day.

Pre teens and teens need a massive amount of food to keep them healthy and I get so triggered when I see threads on here about teens eating too much or gaining a bit of weight 🙄 it's normal!!!

Curly definitely up the calories where you can, will she drink anything like smoothies or hot chocolate? They're great ways to get extra calories in.

Hi all, just catching up, @NanFlanders sorry to hear about the stress with your DD, so glad she's safe.

I'm the same about being triggered by posts on here - I commented on one recently about a younger child eating the same as older ones and cautioned going to far down the 'healthy' approach and cited my experience, it was actually a bit upsetting how roundly that experience was dismissed in favour of cutting snacks, telling the older child not to eat in front of the younger etc.

@BagpussSaggyOldClothCat I was reading your comments about the holiday and self catering. We've just been away and I had the same thoughts, we nearly didn't go and it did mean me cooking the same old food for DD (whilst we grilled and had bbqs) but I would say in the whole it was a positive experience, and we even ate out one night (not enough...) which DD afterwards said she had enjoyed. So maybe small progress, and just being somewhere else and having fun stuff to do helped us all I think

Back to feeling stuck though, DD(14) body image is terrible, and she's vowed to stop eating again after her exams are over (end of next week) so it feels like we're on a merry go round. I need to do something to get out of this but I'm exhausted with a FT job, DH at risk of redundancy (so I can't risk time off) and also FIL dying.

I don't really know how to keep going but I'm failing DD by keeping her in limbo

girlie, she won't have stews or sauces or smoothies (basically refusing anything where there could be hidden stuff). We are changing the SS milk in the bottle for FF and infuse the water for boiling the potatoes and veg with unsalted butter. I think this does add a bit. We are having a weight check on Friday so will see if she is gaining anything on the current plan at all.

I’ve been picking up my daughter for lunch to ensure she eats it but is currently eating only Warburtons thins with a bit of ham / tuna and lettuce ans a banana. She against all her wishes has also been eating cereal but this is yogurt and fruit. She is eating dinner and had a whole plate of bolognaise yesterday when previously she would avoid having the meat and just have plain
she is definitely better but point blank won’t have any snacks, most of her meals aren’t high calories. But in two weeks she will get I assume a proper meal plan from the eating disorder team. I’m hoping that she will follow this but am worried she’s only eating the bare minimum. She also has threatened if we don’t take her running she will refuse breakfast again. I can see she is trying but I also know what she’s eating probably won’t be putting any weight back on. I’m at a bit of a loss really anyone here have good experience that they take notice when told by the experts?? My partner thinks it’s ok cus she’s eating and eating breakfast which she never did before.

whippet, my DD didn't follow the mealplan given by the ED team. For us, it was a downward spiral after being referred. She is following the plan we got after our admission as she knows not eating will mean readmission with the threat of the Ng tube. But I am sure some other cooperate much more.

My husband was initially also much more relaxed. He was dead against me ringing an ambulance when I got worried so I rang 111 'for advice". They dispatched an ambulance and DD was admitted to the High dependency unit as a result. DH is now much more in board but did not understand initially how unwell she was.

I would absolutely not take her running. It is the ED trying to negotiate with you and you will not win. You said she ate the breakfast the last few days. Was this after running?

Do you have a rough idea how much she is managing atm in terms of calories? I use myfitnesspalpal to add stuff in there.

Curly I think at some point you'll have to bite the bullet and put food with a sauce on in front of her and have to deal with the fall out. Once she realises it's non negotiable and you won't back down it should get easier. In theory with FBT you make that decision and she eats what you give her.

Whippet I wondered how you were doing, what happened at the initial assessment? Are your dds obs okay? Did they give you guidance on 3 plus 3 and how to manage exercise?

At my dds initial assessment they said all exercise had to stop immediately and to start 3 meals and 3 snacks. My dd sobbed all the way home and refused to get out of the car for a couple of hours!

It definitely helped my dd realise I wasn't just going to ignore what was happening. The exercise did stop there and then but getting the 3 plus 3 took a lot of perseverance.

@Whippetlovely if she wants to run she has to eat. Not the other way round. And until you have medical advice that she can run then clearly she shouldn't. If she is a v low weight running could be v dangerous.
Exercise was a big driver for my DD and she had permitted exercise (not running!) This was withdrawn if she didn't eat 3 meals and 3 snacks a day. She also exercised in secret so I had to get v tough on that which was v difficult.
Being outside and doing some form of physical activity can help but they have to be physically well enough and 'earn' it.
I was worried my DD would learn to eat only so she could exercise but that hasn't stayed with her in recovery..
Because of her activity she needed 3500 a day to gain weight.
It's great your Dd has started to have meat with her pasta. Add as much fat to any pasta sauces that you can. Put butter on the pasta or oil.
Shes started the hard work. Now she needs to push to go further. Only you can help her with that. The Prof give meal plans, its up to us to get them to eat it...Once it's been provided by a medical team it does give you leverage to say 'this is what has been prescribed to help you get well and strong enough to run again' over and over and over again.....

@Curlyhairedassasin I agree with girlie at some point you will have to bite the bullet and make her eat normal meals which have sauces, proper bread for sandwiches, snacks, etc
She shouldn't be in the kitchen during food prep. In FBT she eats what she is given and doesn't get to dictate.
You can either go all out and do it all at once or do each change bit by bit. Either is tough.
Her anxiety will spike. It will be hell. But keeping mind you are saving her life.

She’s had approx 950 calories Today. She is slim but not dangerously underweight at the mo but I know that could be changing. They just said on the phone she needs 3 meals and snacks. She has eaten the breakfast everyday but to be honest it’s under 200cal. I know she will be very depressed if she can’t do her athletics. I’ve told her it’s dangerous if she doesn’t eat enough she will pass out she says well I haven’t yet I’m fine im not sick I’ve had three meals. She has done well to her to three meals so in her head she probably thinks I’m pushing too far. But I know I need to do it. But what if she then refuses lunch and breakfast but I suppose she may realise she can not do it if we do actually stop it and that may convince her to eat more. It’s so frustrating she just point blank refuses to eat the snacks and I don’t know how I can force her. I have Eva musby book so I will read the chapter on that tonight. She did tell her dad she would have a snack after running the other day but refused to after! 3500 calories sounds so much I can’t see her going along with that it’s going to be hell I’m really stressed about what will happen after the appointment. Will they keep checking on her each week and do they hospitalise if they aren’t having the calories?

Whippet yes and yes, if your dd is having less than a 1000 cals a day exercise is an absolute no no. The strain it can put on her heart can be potentially fatal.

It sounds awful but if she's depressed at not being able to do exercise then good. She has to understand that to do exercise requires huge amounts of fuel ie food.

Has she had her physical obs checked?

You can make her eat, I know it feels impossible at the moment but you have a lot more power than you realise.

You can use her phone as leverage, seeing friends, going to school etc all can be used as leverage. Life stops until she eats 🤷‍♀️

I personally think using exercise as leverage is risky, I know it worked for lots dd but it can back fire or prolong the illness. The ED team told my dd she could have one short walk a day and even that became a source of stress, she constantly tried to negotiate making it longer and would walk quickly or walk and do star jumps intermittently 😳

In hindsight I wish they'd insisted on a complete ban.

girlie and lotts, I know you both are completely right. We have been trying to push the boundaries and it ends every time in total disaster. The ED clinic just told us to stick to the plan for now but that doesn't sit right with me - I really think we need to break out of it too. I will be going away for a few days shortly as I need to support another family member with something (cannot be postponed) so will probably tackle once I am back. I think it's too much for DH to handle alone otherwise. I was initially to happy that she ate the meal plan but I can see now where this would go without further intervention (nowhere).

DD has also started online schooling now. Her school is incredibly supportive and will also arrange teachers to come home for some of the tricker subjects. It's a state secondary. I think we are really lucky in that respect.

LittlePickleHead I've been thinking about you and wondering how the holiday went. Glad to hear it was a good experience. Sorry to hear dd is planning restricting again. That must be very hard to hear. I guess you just have to go down the route of A&E everytime until she gets sick of it maybe? Sorry its so hard with jobs etc.

I NC and joined in on a post about an already slim teen weighing herself daily and wanting to eat healthily with something along the lines of 'You need to keep a close eye because that's how an ED can start'. I had a couple of horrible replies so I gave up. I wouldn't wish this illness on any family and I was just trying to help 😞

@BagpussSaggyOldClothCat I have tried on a few threads too.... the fitness/ slimming/ health message is so strong that until you have seen the other side of it this behaviour seems normal..
It's so pervasive in all areas of DC life, social media, school, often home, sports teams etc that people can't see the damage being done.
What applies to fully grown and developed adults does not apply to kids and teens. Yet as a society its all we talk about.
Yes obesity is awful and costs the NHS a fortune. But it doesn't kill teenagers and children. EDs do. Shielding my DD from all the messaging was so difficult (like PP said we had healthy lifestyle topics in biology, PE, Spanish and French to deal with, as well as stories of mental illness in eng lit (the Yellow Wallpaper anyone?)). School were fully aware of her illness but just didn't think.
The awareness is so low of EDs and the harm they cause.