Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

@Weightlossworried did the nurse suggest about the water in front of your daughter?

Unfortunately the nurse reacted with shock and asked if she had stuff in her pockets etc. DD has said his reaction really freaked her out. I spoke to him on the phone yesterday and told him that. He did apologise. I keep asking for blind weighing and I'll ask again today when we go.

I'm reassured that it may be her body adjusting and putting the weight on. She is quite petite and we're keeping her as inactive as possible so it may well be she doesn't need to eat the full amount to gain i guess. I suppose his reaction freaked me out as well! He has pretty much said that something isn't right - she's either binging or doing something to manipulate the scales.

I think the reaction would annoy me. It’s totally mixed messages to your daughter - like gaining too much weight is an issue.

I totally know I can gain that amount in a week, I think it sort of needs normalising that she’s gaining weight getting stronger. I can see why she doesn’t like him!

I would say keep an eye on her but let her know you think she’s doing amazing to be getting stronger all the time and how much you enjoyed being with her at the weekend. I would feel totally confused if I was her! I would just insist on blind weighing, although it’s no good if it’s blind and then they react to it! Xx

@Weightlossworried How frustrating and unprofessional of the nurse to react like that! My daughter gained 1.4kg one week so it's entirely possible. Some weeks she gained very little and others were more. She was only ever told if it was a loss, maintain or gain though, never the amount. Towards the end they told her the numbers, but only when they felt she was ready.

Well she's apparently lost 1.1kg this week. He apologised to her for his reaction last week.

He is now saying maybe we should blind weigh but it's too late, she's adamant she wants to see it.

We're going to have an appointment with the dietician next week so we'll see if she has any suggestions for getting more into her.

I don't feel too upset by the loss as in total she's gained a few hundred grams. His approach really isn't ideal though

It does sound as if maybe there was something odd about the result last time, but your DD shouldn't have had a hint of that! Its so hard as weigh ins are such a reassurance/ guide for us parents, but a minefield for the sufferers and an imperfect tool given the variety of bodies and how we function
I'd keep pushing for blind weighing, assuring your DD you'll give her a summary but this last couple of weeks have shown how the numbers can jump around and she doesn't need that extra stress. We just talked about 'recovering' and 'close to safe' and 'ok to move a bit more' , and we were shown the actual numbers on our own and whilst DD always said that meant she knew she'd gained, not having numbers to hang on to helped.
And hopefully the nurse will learn and do it blind for the next person from the start

My DD put on 1.2kg in one week of her recovery. I think it was about the 5th or 6th week, when her metabolism had settled down a bit. It's not unusual I don't think.

@Weightlossworried mine also used to have enormous swings every week up and down. I think there's a few possibilites - yes, drinking a litre of water, also i think there is a point at which they get a massive boost in water retention as below a certain point the cells can't hold on to water (this is an awful description i know!) and also deliberate management by the patient. Mine was a bit from all columns as 18 months on they are still always reverting to the same very low weight. From one up/down I guess you won't necessarily know which, but also i think looking at medium term patterns is more useful and should be what the medics are doing, especially if your dd has some resistance
Also echoing what others have said about different people functioning at different levels - mine is naturally extremely slight and still menstruated and was able to function at points very significantly below what others have mentioned. DofE is meant to be inclusive

@Weightlossworried we were always told to look at the trend rather than the numbers themselves as they fluctuate week to week. She was blind weighed and I would recommend this too. Also, when she was very low weight they would measure her upper arm circumference as well.
it is amazing how sneaky they can be with weigh ins, hiding all sorts everywhere. I think they should all be weighed in hospital gowns. It wouldn’t stop the water loading but it would help with heavy objects hidden on their person! Poor kids, this is such a horrible illness.

Sometimes they jump in weight unexpectedly, so it might be a build up. My DD appeared to put on 2kg in a week at the start of her treatment. She had been severely dehydrated so suddenly put on weight when she was being forced to drink regular water with meals.

Any suggestions on what to do with the trigger of clothes getting too small. DD (15) has done really well with eating and putting on weight but was really stressed with how a T-shirt was tight under the arms today. Not sure how to go about surreptitiously replacing clothing. She really needs to be a size 10 I think but told the ED team at her assessment that she would hate to go above an 8 which she has always been. She is 5 foot 9 though so very tall. Last time she was weighed she was at 89% wfh. Thanks.

Buy her new clothes and cut the labels out?

When my dd started regaining weight a lot of it started to go back on her boobs so I took her bra shopping and gradually started to get her new clothes.

My dd complained the pockets were sticking out a bit on her trousers. The ED coach said the next time she complains about things not fitting to say:

‘Maybe the cut isn’t right for you anymore. If you don’t like the way they sit on, maybe it’s time for some new trousers.’

Then when at a shop:
‘You know you can go to the shop and pick up a size 8 and it fits and in the same shop, you can need a size 10 for something else. Don’t always go for the size you think you are.’

I appreciate it’s specifically for my dd, so idk if it would work for you. Dd is ND.

Unfortunately dd has stopped gaining weight and with the amount she’s eating due to exam stress, I’m expecting a loss again…

Hi does anyone know if CAMHS actually give meal plans? Or do they leave it up to us to plan / design?

@baderror404 it seems to depend on how much involvement they have. They have access to dieticians and meal plans etc. They also have portion size guidelines so you know how many sausages etc. I would definitely ask them for everything!

Thanks @Pearl97 that's a good idea, my DD is better if she is given clear guidelines from them, rather than from us!

@baderror404 I totally agree. The portion size is very interesting too as this makes a big difference xx

We were given a meal plan but my dd was the opposite @baderror404 and preferred it when I made the decisions (well she didn’t say that out loud but was more likely to eat it!) I also thought their meal plan was too low on the calories so I designed my own plan.

We were given a meal plan but it was very generic. The suggested snack list was more detailed and helped us adapt the whole thing to suit. It was all sent as soon as we were taken on, and progres /adaptations were discussed at our weekly catch ups (still are!)

We were given a sort of one - it gives you ideas of portion sizes of everything and examples but isn't prescriptive

Hello, I'm not a Mum I'm a Dad but reading these posts I've recognised a lot of things that we're experiencing as a family.
My daughter (16) has been suffering with an ED for at least 15 months but looking back at her previous behaviours around meals it seems to have been a long time coming and finally built up to full-on calorie-restriction and morbid fear of foods that she previously enjoyed.
She's had two stays in an inpatient unit after being admitted to our local infirmary in May last year due to our concerns about how she was presenting (lethargic, slow speech etc). While in the inpatient unit (and once outside) there have been four attempts to place her under a section but she's been deemed to have capacity each time. This led her to self-discharge for the second time a month ago and I've been signed off work on sick since in order to look after her. It's a shame because she was making big improvements in there but she was always terrified that she'd be sectioned and worried about the stigma of being in a mental health unit. CAMHS ED teams are still heavily involved and they're great people but they can't be here 24/7 and, truth be told, she should really still be in the unit (I hate myself for thinking that but she isn't going to get physically poorlier in there and like I said before she was improving and really coming out of her shell).
I wondered how others in the same situation manage regarding time off from work? I know that my job is the least of our worries right now but at some point I have to start thinking about the mortgage. Working from home isn't an option (I'm a lorry driver).

Hi @Backandacross I’m sorry you’ve found yourself here but welcome to the thread it’s a supportive friendly place.

Are you claiming all the benefits you can? Your dd can get DLA (I think) and while you’re not working you should get universal credit and possibly extra for being a carer. Have you got a citizens advice place near by you could go to talk to someone about what you maybe entitled to?

If you think your dd is restricting and unwell I’d keep presenting her at a&e and push for the section. Ask for a referral to safeguarding and say you don’t feel she is safe/well enough to be at home. Mental Capacity doesn’t really come into it when they’re deciding whether to section someone it’s more about the risk they pose to themselves or someone else iyswim. This is especially the case when it’s a child.

Hiya, @Girliefriendlikespuppies, thanks for taking the time to read all of that and reply!
I can't get UC or anything like that yet because I'm on sick, I haven't been sacked or anything. I don't even know if you can if you're mortgaged. Ideally, I'd rather not lose my job but if it happens, it happens. I just wondered how other people managed in this situation.
She's been trying really hard but she's had a bit of a wobble this week. It's just really entrenched and she can't handle surrendering control. With regards to sectioning, she isn't refusing treatment as such so there's no grounds to do it. She went into the unit voluntarily both times so, seeing as she was consenting, there was no need to detain her. When she discharged, she was at (I think) 86%, so she wouldn't meet the criteria for hospital admission on physical grounds. That was my understanding, anyways. I'd love her to manage without going down that route, obviously, but I'm not a mental health professional and everything I know about EDs has been learned in the last year and, to be honest, I still don't have any idea of the best way to help her.
Apologies for another lengthy post but, as I'm sure you know too well, it's a very complicated thing!

I was signed off work with stress when my daughter went into hospital. I went back to work, had a total collapse and was signed off for several months.. Her dad and I now split the week between us as she needs supervision at home. That works well but only possible because he took part of his pension (old parents!).

She can apply for PIP if she hasn’t already. She will get it while in hospital.

There definitely will be benefits you can apply for either for yourself or your dd or both but CAB will be helpful in pointing you in the right direction. Are you a single parent? You can definitely get UC if you have a mortgage.

How much sick pay are you entitled to?

86%wfh is still v v low… how much is she eating now?