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teen eating issues support thread

999 replies

myrtleWilson · 06/09/2020 22:30

Hello,
would anyone be interested in joining a thread to support each other as we support teens with eating disorders @MNHQ - I'm tagging you in as am conscious of triggering issues and wanted your ok/ground rules to such a thread..

Happy to share our story with DD if others would feel it is helpful...

OP posts:
greygirl · 17/12/2020 12:19

hello everyone.
I have been off work so not had chance to keep in touch with you all.

I wanted to say how rubbish it all sounds for everyone , and although we are in the depths of despair, we have to keep going. The hate-filled rages, the violence, the swearing, the self-harm, the slamming of doors - these will get better with time as their brain heals. The monster inside is trying to scare you off with all this nastiness, you have to look it in the eye and ignore it. Hard to do I know, but we are strong mothers and we can do this!

In my own case, we have had a slow but steady improvement, so remember It does get better - my daughter keeps telling me she loves me now, and the other day she came home from school with a chocolate bar she had been given in class. She ate some of it in the car, even though it wasn't on her meal plan!. Only a bit, but she ate some of it. I was so happy for the rest of the week!

Christmas was utter hell for us last year, so what I would advise (if I can bear to revisit that awful time) is:
you need some distractions (even harder with covid this year) - so find some online shows to watch, get some new games to play, buy a jigsaw or two from the charity shop, plan some (non-baking) crafts. Buy some christmas interior decorating magazines to drool over.

Your child will be terrified of christmas - the less break to routine the better in my opinion. Try to eat as a family without too many extra people. Let them know what you will be serving for them - even if they have different food to the rest of you, they need to know what they will or won't be asked to eat. Just the stress of sitting next to a box of celebrations might be a trigger.

Have a plan with the rest of the family what you will do if they don't eat - AN may well try and not eat in front of others, hoping you won't create a scene. Either eat before you visit or be prepared to leave if eating isn't occurring. warn others about possible outbursts and arguments.
Try and remember your little child who loves you - they will be weeping inside about missing christmas (believe it or not) and so maybe this is the time to watch old favourite movies and talk about past christmases (even if they are grumpy).

To be sneaky, try and get them to wear a christmas jumper or hat - all heat conserved is calories saved! Turn up the heating if you can. We bought an electric blanket to keep DD warm at night.

On a more routine note - we didn't let our DD know her weight for some time at the beginning - it wasn't helpful to her and just made it harder for us to feed her after. After a while we did let her know , but not when she was very ill.

It's the drama of 'i would be better off dead than eating a chocolate brownie' that really used to irritate me. Can't you see what you are doing to everybody's lives while you are like this? But they can't see, they are too ill.

Good luck everyone!

TheySeeHerRowling · 17/12/2020 18:47

greygirl amazing advice, thank you - I have been apprehensive about Christmas but this has helped

Just off our zoom call (actually a conference call on my mobile because Zoom froze) and dd admitted she hadn't been eating all her lunch or snacks at school - weight had stayed the same, so an explanation was needed, given that she has eaten pretty well at home this week

Not great, but I'm glad she was able to be honest about it

Makes the usual Sunday night meltdown easier to explain - the ED is pissed off that dd has eaten well all weekend and wants to assert itself, the bullying bugger Angry

Will be interesting to see how the xmas hols affect the routines and rituals - dd is keen to get to the point where she can go back to dance and I hope this will be enough to get her through

Scr1bblyGum · 18/12/2020 06:04

Grey thank you that is so helpful. Those tips will be really useful.It’s so good knowing the rages are normal, I’ve just this week asked the EDT if they are. Will talk to them about it next week.Got hospital appointment today which will be hard for dd as she should do well. She has battled and school have been monitoring intake.I can’t believe that 3 or 4 weeks ago she was in HD.

I’m worried about after Christmas.Dd is terrified of being in over Christmas and has had a good two and a half weeks food wise overall. Christmas has been a goal.Some downs but she has been dragged back up by the extra support.

How did things pan out for your dd in the weeks after Christmas? Got to find another goal. It’s really hard thinking of something with Covid.How long do you think it needs to be without plummeting for the brain to really start kicking back to some semblance of normality?

Myrtle how are things with you?Trust me we’ve had our meltdowns(mine included) the last few weeks. You are only human.💞

Lougle · 18/12/2020 19:52

I've just watched the Louis Theroux 'Talking to Anorexia' documentary. It gave a real insight into the strength of anorexia.

I hope the next 2 weeks are not too stressful for you all. I'm glad that DD1 has finally finished school.

Scr1bblyGum · 18/12/2020 20:43

Where did you watch that Lougle?

Well we had an interesting day. Ds’s hospital clinic went very well, so much so they’re not booking to see her again as physically healthy now. 3 week’s ago she was in HD. 😱All the CAMHs support is still there for now and they said to let them know as soon as she deteriorates as they’ll have her back then.

We’re a bit scared. She does things so quickly. Really hope she sticks with it now she knows she don’t be back in over Christmas.

Scr1bblyGum · 18/12/2020 20:56

Has already refused pudding as full. Guess that’s ok.🤷‍♀️ The meal plan which is the weight gain one hasn’t changed.

Lougle · 18/12/2020 21:25

@Scr1bblyGum that's....good news? But I hope they act quickly if you need them.

It was on BBC iPlayer, covering two inpatient eating disorder units in London for adults.

myrtleWilson · 18/12/2020 21:59

hey everyone, we had meds review today with consultant - long story short - tough week, severe restricting in last couple of weeks (c 500 calories a day) they were worried about re-feeding and suggested paeds admission. Our concern is that doesn't really work, DD complies in hospital but rapidly tapers off once home, plus it fucks up her mental health support.
We agreed to do re-feeding plan at home - which is longer and riskier but actually knowing DD will only 'comply' in hospital and then restrict at home, I think is better. Plus the meal support and motivational therapy is only just kicking in so I am hopeful that we can do this. That said, we're no stranger to the CAMHS crisis line and will of course go to A&E at slightest concern.

So re-feeding at home will be to add 200 calories per day. Which we've managed today - WHOOP - 800 consumed.
Tomorrow we aim for 1000 and then 1200 the next day and then bloods will be taken and a decision made.
The consultant also said that if admission is needed and then restriction happens immediately afterwards (which it will), then residential specialist unit will be required. Which is awful and I'd hate it but DD is nearing 18 and can't transfer to adults in this state.

So a sob, a whoop, a hope and a warning sign.

Sorry, not yet caught up on others posts - but will do so now

OP posts:
Lougle · 18/12/2020 22:12

@myrtleWilson that's really difficult. Well done for getting the 800 in and I hope you get more in over the next few days.

DD1 didn't eat breakfast, had a snack at school, so refused lunch as she 'didn't feel well'. She did eat dinner though.

Scr1bblyGum · 19/12/2020 07:11

Wow Myrtle well done with the 800, that sounds like a really good plan. Has she got any goals? Meds should help too. I’m so pleased things sound a little more positive.

We’ve been giving the meal support a fair bit of tricky foods which have helped. Had to pull back a bit as I didn’t want dd refusing to engage. Staying out for Christmas has been a good goal for us. Meal support lady then suggested dd being able to go out for a day with friends after a couple of weeks with better behaviour snd continued progress so we can see she is managing the emotions of getting back on track which I thought was a good next one.

We’re kind of confused now re the plan. Ours was the restorative one which dd has now done. The 2 puddings and 3 snacks are a big ask going forward and I think we should reduce as she’s going to get fed up with them and may well want to diet if she goes too far. The dietician said with the puddings and snack it was what a teen should be eating with the increased exercise of full time school she’d stop putting weight on and just maintain. So yesterday she ate a whole plate of sausage casserole and mash for tea, refused the pudding as full and marched off. I was full so kind of got what she was feeling. Let it go. Don’t know if this right. Think we’re supposed to be in full control still but how much should we let her deviate from plan if at all? I know what she’s like if you give her an inch however going forward we need to be realistic.

Think I’ll ask the family therapists. We’ve got a horrible feeling they’re going to start pulling all the support now she’s doing so well. Haven’t had it for long and it has made such a difference.

Girliefriendlikespuppies · 19/12/2020 12:15

Oh myrtle I really feel for you, your dd sounds so poorly and the stress on you and your dh must be unbelievable 😕 well done on taking that decision and getting the calories increased.

Lougle your dd sounds so similar to mine at the beginning of all this.

Scribble pudding here is non negotiable, I don't think dd would even bother trying to refuse as I'd go mad! That said she's only having one pudding a day and 3 snacks not sure I'd get two puddings into her. I've asked for dd to be referred to the dieticians as I believe she needs more food than I'm giving her but she absolutely will not accept that from me, she might accept it from another professional though....

Scr1bblyGum · 19/12/2020 21:00

Well we’ve had a rubbish day.

Dd barely eaten 900 calories. Been quite low. Not had afternoon snack. Only had a very small of pizza for tea, refused pudding ....

Ffs, so annoyed with her. Been very low today, guess it was the weigh in.

myrtleWilson · 20/12/2020 21:08

Sorry to hear that scr1bbly - I hope today has been better for you all?

Hope everyone's weekend has been okay and for if any of you have been moved into T4 - I send you a virtual hug.

We've got weigh in tomorrow morning - DD will be anxious and I feel like I'm on a plane with cabin crew shouting "brace, brace, brace"

OP posts:
ThisTooShallPa55 · 20/12/2020 21:43

Now refusing snacks and puddings and only some of the evening meal. Why!!!!!!!!

She admitted this evening that she ate well the last two weeks to keep out of hospital over Christmas. Because clinic didn’t book to see her again she didn’t think she’d be weighed again.Hmm Clearly struggling with the weight gain.

She isn’t happy with the meal plan staying the same.😩

ThisTooShallPa55 · 20/12/2020 21:44

Hope tomorrow goes ok Myrtle

Girliefriendlikespuppies · 20/12/2020 22:40

Good luck for tomorrow myrtle.

Our wend hasn't been too bad, I have to keep on to dd constantly to eat which feels relentless but she did have 4 quality street chocolates earlier which I was inwardly cheering about (poker face on the outside!)

I'm leaving her with my mum tomorrow as I have to work so I'm hoping she doesn't play her up too badly...

ThisTooShallPa55 · 21/12/2020 19:39

How did it go Myrtle?

TheySeeHerRowling · 21/12/2020 20:06

Hope the weigh in went well myrtle

Ours was hopeless - another loss

We're trapped in this restore-maintain-lose loop and she's been hovering around 45kg for 2 months now

My kitchen is full of Christmas deliciousness but will any of it be eaten with pleasure rather than forced down - probably not

myrtleWilson · 21/12/2020 23:47

A 500g loss here - not unexpected given circumstances. But CAMHS have ordered an air mattress for us at home so thats good as DD is struggling with back and hip pain - her description of how it feels like the skin is tearing is not good...

Re-feeding is going okay, but our problem is that DD has such a limited range of foods that she will eat that increasing calorific content means adding volume which obviously freaks her out when seeing her plate get fuller. At the moment she'll eat

  • porridge
  • yoghurt
  • fruit (grapes, kiwi, nectarines, plums)
  • veg - any - except potatoes
  • white fish
  • chocolate or strawberry milk
  • soup - but nothing containing meat, or pasta, and will avoid potatoes
  • assorted snack items like itsu rice cakes, go ahead bars, alpen bars, oat biscuits etc

basically we're at a cross roads where one route says fear foods, the other says fear of volume...

Anyway enough of my moaning...

theyseeher - it is a loop - have you ever seen Emily Blunt/Tom Cruise film "live, die, repeat" it is worth a watch but the looping is spot on for this thread - except from in the film they learn from each loop!

girlie - how is your mom with DD - does she understand all the elements?

thistoo - am so sorry your DD is refusing again. I know the feeling of compliance to keep out of hospital...

lougle - have you heard more from the GP yet?

@Bellabluea sending best wishes that the discharge is going okay - I think we spoke with your Rachel on one of our camhs crisis calls!

OP posts:
Bellabluea · 22/12/2020 00:08

Hi! Sorry long time no update!
L is doing amazingly well 2 weeks post discharge. She’s had bad days and good days but she seems to be getting her appetite back which is fab! She’s gained 4kg since she left so I’m over the moon. Hoping she’s going to be the rare type of anorexic who has a bad episode then recovers.
@myrtleWilson Rachel is lovely and Amy the dietician is too. Next appt is the 2nd at Chester I think?
She has a limited number of foods she’ll eat too. She eats fruit and weetabix like it’s going out of fashion currently!

Scr1bblyGum · 22/12/2020 06:42

Myrtle pleased about the mattress and that refeeding is going ok.It sounds so worrying for you though.

Bella that’s great news. Watch her after your appointment. My dd is finding things really hard after our 2 week appointment post discharge. Lots of praise re getting to a healthy weight although we tried to keep it muted. She is now restricting again as doesn’t want to put on any more. Told family therapist she isn’t trying to lose weight and is just worried about being on the same restorative plan but I don’t believe her. I think she has sheared off around 1000 calories in 2-3 days. I got told off mentioning calories but find it very hard to monitor things otherwise. Family therapist requesting GP check ups as hospital didn’t want to see her again. We are discussing changing the plan with family therapist in 10 days time so she feels happier. Maybe ditching hot pudding and late night snack.It will rely on her eating everything she is supposed to though and I’m worried she won’t play ball. Eating support today so we’ll see how that goes. She did eat better after speaking to the family therapist yesterday.The therapy does seem to stop her completely spiralling. I’m worried as we’re so reliant on them and if they pull everything the cycle will start again for the 4th time. Not sure my sanity would cope with a 4th admission.Hopefully they won’t disappear until she’s really sorted. Not seeing family therapist for 10 days and then just for half an hour due to festive period. Bit of a worry as I suspect things won’t be easy due to lack of routine.Got meal support today and Sunday though.

Can I ask for those of you who have done family therapy what your dd is like in sessions. My dd is just awful, really argumentative and negative towards us. They never see her lovely side. It makes me feel so raw and exposed.

Girliefriendlikespuppies · 22/12/2020 09:06

Morning all,

Myrtle from that list of foods porridge and the strawberry/chocolate milk sound like the ones most likely to be able to get calories in. I make dds porridge with double cream, she's never cottoned on that it's not made with just milk. Will your dd drink smoothies? I can make a 500ml smoothie which includes a whole plummet of blueberries and raspberries and is topped up with double cream. Your dd sounds very frail though bless her, how frequently is she being monitored now?

My mum isn't too bad with dd, I have spoken to her a lot about 'the rules' around refeeding so not giving dd choices or allowing negotiations etc I also pretty much instruct her what food to give dd. It's more tricky getting my mum to not comment on anything appearance wise in regards to dd or anyone else. For example last night we were watching a programme and mum commented that one of the presenters had gained a lot of weight 😫🙄 I wanted to kick her!!

Lougle · 22/12/2020 09:39

Well done to you all. In a few years you might find your children thanking you, even though it feels so thankless now.

No contact from the GP yet.

TheySeeHerRowling · 22/12/2020 10:13

Scr1bblyGum my dd is monosyllabic, lots of grunts and 'dunno' and eye rolling Hmm - as illustrated

She doesn't argue with the therapists, but her engagement with them is as minimal as possible

I have to bite my tongue not to answer for her a lot of the time

Scr1bblyGum · 22/12/2020 14:27

They my dd argues, corrects and criticises me during FT, grunts I could cope with.She can be like that when stressed but is lovely a lot of the time when not low and struggling with the ED. It just feels like the worst of our relationship is laid bare every week during FT.😩