Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

@Cantfindthewordsddstruggling I've felt the same several times. I keep going for my younger daughter and reminding myself this is a temporary blip in our lives. It's definitely the hardest journey I've ever been on (hope to god there isn't anything harder!) I haven't had time to see the gp for me, I don't know if it would help, I know if I'm well I can look after ds better but there just isn't time at the moment. Hang in there, please. It's dark now but little rays of light do eventually come through, we're new to all of this as my son only became unwell end of August. We're here for you xx

@Cantfindthewordsddstruggling We have all been there, wondering why we didn't notice sooner, second guessing food/diet choices/searching for reasons why. Do not blame yourself though - there's strong evidence that anorexia has a biological basis, and is brought on by calorie deficit in those with a genetic tendency. In answer to your question about ADs - I started taking them before DD got ill but I don't know how I'd have managed without them the past couple of years.

Evening everyone. @Cantfindthewordsddstruggling - like others I completely understand how you're feeling. When we realised that there was a problem with dd I felt like our world was just crashing down around us, we discovered all sorts of things I never would have believed. We removed all internet access from dd as she was obsessively searching for lots of unhelpful content. We have realised the extent to which the ed will be sneaky, and so some of the behaviours and lies are so shocking. I don't take antidepressants, but I'm considering whether I should.

@NanFlanders - loved your dd's jar of challenges, gosh that gives me hope.

@Proseccoismyfriend - how are things going for your ds? He's been in my thoughts.

We had another health check appointment today. I think dd is close to 100% wfh. I'm reluctant to even say that because we are nowhere near things being better. I don't know what I expected but dd is still just awful. I feel really wounded by how intentionally horrible she is to me in particular. So I'm thinking we press on and see what happens if we can add some more weight. It all just feels so relentless. I'm finding it really hard to believe we will ever be free of this monster today.

Sorry just read that post back and realise it's a bit disjointed and random. I've got Covid, feeling a bit knackered, and it took me about an hour to type that out as I kept on getting distracted 😂 sorry, hopefully my brain will be back online soon 😳

@Cantfindthewordsddstruggling
the initial helplessness was just awful for me. I didn't sleep, couldn't eat, lost weight, crying non stop. I was in a constant panic mode, like a headless chicken. We have been on this journey for a year and I have to say, it has gotten easier. I think the brain adjusts to the new shitty normal and along the way, you learn to deal with things a bit better and you get a better handle on the ED (though I feel my grip isn't too strong like now).
I have days when I am really down but a lot more good than bad days. I could probably do with seeing the GP but haven't had time for that. But it does get better. We missed so many ED behaviours initially too, don't beat yourself up.

Thank you @greydoor we've had some glimpses of our ds coming back, he's facing many fear foods but does find eating a challenge it's so up and down I'm constantly on edge and nervous. We've been lucky to have nurses to the house almost everyday supporting me through his meals.
Well well done on approaching 100% wfh, I have read that the brain is the last to recover so definitely keep pushing. I want to aim higher than 100% so we have a buffer and also for his brain recovery I'm terrified of slipping back so anything extra will only help. I'm so sorry your dd is being so unpleasant still, I really hope that begins to subside and also hope covid passes quickly!

@Lottsbiffandsmudge thank you for the link.

Hi all, im new here and so new and uneducated about ED

It appears my 12 year old daughter has developed one
I posted a while ago with concerns and @Lottsbiffandsmudge spoke about this group so hopefully I can find some support until I wait for a referral

She told me yesterday she worries at school about having to eat dinner despite me trying to be gentle in ways to make dinner have to be eat, without making it a chore but from talking to her last night watching her gag and eyes water - she is saying she isn't hungry - didn't eat breakfast that morning and eat a tiny bit of lunch ( least she was honest when I asked how much Lunch did she manage ) so she's not afraid to talk to me but she broke down and said that she's really trying which I do believe she is so I ended up making her a Nutella sandwich and she had some chocolate....probably wrong thing I know but I'm so lost as to what to do.......the dinner was a chicken risotto and salad but she just doesn't 'enjoy' it so rather than watch her struggle I said not to worry and that's when she cried as in relief.....

Things I've done -

Found some smoothies she likes so if she doesn't fancy breakfast one morning the deal is she has a small glass so least it's something

I let her be in control of when I dish up so she tells me when

I ask is that enough? You can always have more ? So she doesn't feel like it's a big plate

Making the portion fairly small so it's not over whelming

Not worrying so much on the sugar content
If crisps and choc are a snack so be it

Asking if there is anything she fancies when I do online shop so we have 'yummy' stuff like her faves - Mac cheese/hotdogs/pizzas etc but always try to do a bit of veg or side salad

Taking a multi vit

'Treating ourselves' so making it enjoyable and having film/choc/popcorn night

What else should I be doing or anything in that list I shouldnt?

Hi keepfaith I'm at work so will answer in more detail later but start reading up on FBT which is the proven and recommended treatment for restrictive EDs in kids. Also start looking up Eva Musby videos abs get yourself the book.

A lot of the advice will seem counterintuitive but you have to take full control of all the meals abs your dd has to eat three snacks and 3 meals a day. She should be given no choice but obviously only give her food you know she likes.

Keep her out of the kitchen, you decide on the portion sizes, you decide what she eats.

It's impossible to do this without causing upset and confrontation however you have to push passed that and learn to manage their distress.

Is she physically stable? If this has been going on a while you may need to take her to a&e to get her full obs checked including bloods, ecg, bp (lying and standing) and pulse.

Hi @keepfaith22 sorry you have found yourself here, but this is an incredibly supportive and knowledgeable group of parents so I'm also glad you are here.

My dd is 12 as well, and we first started to realise her eating was changing in spring / early summer. Like you, I focussed my efforts at that time on being supportive and understanding. I bought my dd foods she said she felt more comfortable with, helped her find and cook 'healthy' recipes, supported her when she said she found exercise helped how she felt. But I realised at the end of summer that she had full blown anorexia, and what I've learned since then has been pretty devastating and has turned the way I've had to parent right on its head. I have learned that for us, anorexia thrives in the compassionate space a parent tries to create, and grows bigger and more powerful with every missed mouthful.

It maybe that you have caught this right at the beginning before it has taken hold, but it also might not be the case, so I would agree with girlfriend and urge you to get Eva Musby's book, look at her website and YouTube videos. She is very good at describing the internal battle that is happening inside an ed person, and what parents need to do. Beat is also a very good website with information about all kinds of eating disorders.

I'd also suggest you weigh your dd, and measure her height. We don't tell our dd about how much she weighs, whether she gains or loses, as I think that would feed into her struggle. So I cover the scales display with a bit of card and peek under once she is on the scale. You can calculate her percentage 'weight for height' to find out where she compares against the most average person of her height. Here is how you do that:

• Use a bmi calculator for children and put in her height, and then keep putting in different weights until the result is 50th percentile. Write that weight down.

• Then take her actual weight, and divide it by the weight you found in the method above, and multiply by 100.

This gives you her 'weight for height', which is what medical folks tend to use instead of bmi for kids with ed. It is a very broad brush measurement, and later on down the line it's best to aim for 'state not weight', but it gives you an idea of how far off a median weight for her she is. Ed teams tend to recommend restricting activity and increasing calorie intake below around 75%, or higher for some kids, especially if they have been having very few calories for several days in a row.

Seeking medical help if you realise your dd has been eating fewer than 500 calories a day for a while is also important, as it can have significant (but reversible with feeding) effects on the body and the heart.

The first few week after we realised were pretty hellish. Once the ed realises it has been seen, it comes out fighting. That's another thing to say - most of the advice is to try and separate out your loved one from the ed, and see the ed as something which has kind of hijacked your dd. So if she is swearing and screaming, it's not actually her, it's the ed monster. Gradually as they recover you see glimpses of the person they are, but when they are in the throws of it it's horrible.

I add lots of high calorie things to dds meals, so that the portions can remain small and not overwhelming. So she has porridge made with double cream, full fat Greek yogurt with double cream whisked in, milkshakes made with haagen dazs and double cream and nut butter. Fat is needed to heal the brain apparently.

Once the switch has been thrown, the person will find it very difficult to think themselves back out of an ed, while their brain and body is in a starved state. So parents are basically responsible for 'refeeding', and achieving physical recovery before any psychological recovery can even be contemplated (if it's needed).

Hope that helps. I really hope you have caught this before the switch has been thrown, but just in case id arm yourself with as much information as possible. Early intervention is really key here, so as long as your dd is healthy (in terms of the checks a gp / medic might do), you can get started right away on increasing calorie and fat intake.

And use this board for advice and support. I don't know where we would be without it xx

Im new here, I've been reading all your posts and have found all the info has helped me massively.
My daughter is 16, we had a first GP appointment today. I requested a referral but was told dd needs a blood test first or the referral will be rejected.
DD is petrified of needles and point blank refuses to have a blood test.
I'm not sure what to do! She's had under 500 cals every day this week. She's had rapid weight loss last couple of months, which prompted the GP appointment.
Her height and weight were checked, DD also refused the blood pressure and burst into tears.
My DD is very stubborn so I know she won't agree to the blood test. I'm so stressed out with it all, she looks so pale and tired all the time.

Tiny pin** I'm sorry you've found yourself here on the thread no one would want to be on!

My dd is also massively needle phobic so I understand how stressful that is. Have you got any leverage over your dd? Can you take her phone? Or is there anything else you can use to get her to agree to the bloods?

Ultimately if she doesn't have them you'll have to take her to a&e and worse case scenario they'll section her to get the bloods 🙁

At 16/17years things become more tricky. In fact if DC does not want parents' involvement camhs (if you get that far as we had to wait many months) may not inform you of/discuss with you any problems.

Thank you for your advice - it makes perfect sense

Tonight I dished her dinner up and made it usual size for her but didn't ask her to comment on if size was ok. Played it down and when she stopped half way through ( we are doing tiny portions because she won't eat it if it's too big) said to keep going and she eat it all so she had praise of a good job well done but not OTT then she asked for a pudding not long after so a good successful eve

She admitted she had a small lunch today

But will concentrate on breakfast and dinner and snacks at weekend
Can't control lunches as can't trust her to eat packed lunch so I do pay for school dinner as she does get them

And to add she seems on the outside absolutely fine - she doesn't have any signs of poor mental health

I did manage to weigh her tonight
But I did a sneaky.....I asked her to help me weigh baby by weighing her holding baby and then without so I could roughly work babies weight out.....

Thank you for the advice

Have I done this right?

Her actual weight 6st 7
Her weight from the bmi chart 7st 6

After the calculations is come out 88 ?

Another thought about the needle phobia. Maybe ask for a topical cream that is often used with little children (but also for adults when asked for). Called Emla cream.
It numbs the skin.

Can I ask your take on weighing/measuring food?

DD is on a very restricted meal plan. She has her 3 meals and 3 snacks a day but there isn't an awful lot of variety and DD is extremely restrictive. A while ago, we managed under a big struggle to re-introduce butter (but DD would only accept it if it gets put onto the kitchen scale).

We saw the ED team this week and they told us strictly no weighing and getting rid of the kitchen scale. No DD will now not have any butter at all. Hell breaks lose if I want her to have a buttered bread and she will not eat it. ED said to carry on without scales and to keep on trying. But I am getting nowhere.

What would others do? Try to work on getting her unscaled butter or sticking with the scale as that enables her to have some at least? (we have about 10gr per day which add 70 cals to the meals). Her weight is hovering around the 90%wfh. she hasn't really gained any weight in the last few months. She is also water loading before weigh ins so we don't really know the actual weight.

@keepfaith22
I have a WFH calculator on my phone and can run the numbers for you. I need the weight and height (metric, no pounds or inches and her rough date of birth (months and year are enough). If you wanna PM me these, I can check the WFH for you

@Curlyhairedassasin it's a tough one isn't it.
I tend to agree with your ED team. The weighing is a part of the deal she has struck with her ED. No weighing no butter. I think it's a battle you may have to have, if not with butter with something else. The ED has the power here.
90% is a tricky wfh. It's often a psychological barrier sufferers are terrified of crossing. I learnt about it on my Beat course. The only way to know what will happen is to cross the barrier but it's v hard to get them to do.
I would have stuck the butter in something else and hidden it. But that was my way. I know it's not for everyone.
90% sounds so near but in reality it's often very far from near. Her behaviours are still ruled by her ED somehow that power has to be wrested away.

@Girliefriendlikespuppies Thanks, It feels surreal that this is happening and I'm on this thread. Oh gosh being sectioned sounds awful. The only leverage I have is her phone. She says I'm trying to control her. Last night after further discussion she said I'm not getting a blood test, I'll just eat more!

@Temporarymember the thought of not having any input with anything at 16/17 is very concerning.
It's not just the needles, she fainted once when she had a cut on her finger. The thought of anything to do with blood freaks her out. The GP mentioned the numbing cream so at least that's an option.

I'm wondering is it correct that a blood test is needed before a referral can be made?
Seems strange when others can self refer in different areas.

@Curlyhairedassasin that sounds challenging. Was it the ED team who suggested introducing fear foods? Our DD is 98 and we have only just started to try w them. I also hid calories in stuff (our ED was anti this) but I thibk our DD needed to get to a certain wfh before she could entertain challenge to her rules. She still protests (out of habit? To show the ED that she's doing it under duress?) but can follow through eventually. At 90 just getting 3 snacks and 3 meals was plenty challenge for her.

Thanks @Lottsbiffandsmudge. Makes sense.

not sure really if we introduced butter as a 'fear food'. We added it as she needs fats and avoided them and it was an easy way to push up calorie intake @ReineDeSaba . I am a big fan of hiding calories but she eats in such a restricted way, that hiding is hard. She still is not eating home cooked stuff, no shakes etc. She eats break, sandwiches (currently again without butter, sigh), bananas, yoghurt, puddings, canned fish, stuff like that where she is sure of how much she is taking in.

@Curlyhairedassasin so it sounds like your DD already knows the value of all the foods she's agreeing to eat. Weighing butter is almost a technicality. What about those mini butter portions as an option?

@Curlyhairedassasin how about your own bargain? Drop butter but insist on a home cooked meal each day? She needs to be pushed beyond this narrow path the ED is prescribing. And she needs to be uninvolved in what those meals are. There should be a plan though so she is spared the uncertainty of not knowing. Once you have established that you can add calories.
So rather than tackling 'fear foods' sell it to her as a way of clawing back some normality (assuming home cooked, family meals were her normality). I would fram it as: you have eaten home cooked meals before. Nothing bad happened. You can again with our support.
It's so much easier if some control is wrested back. Maybe start with a weeks worth of meals that aren't too challenging and move one from there?
Just a suggestion
I didnt like bargaining with the ED but sometimes it had to be done to move forwards.

My DD (ED inpatient unit, but on home leave 4 nights per week) does weigh and measures everything. She is approaching 18 and is allowed to prepare her own snacks and some meals. In her case I think it is helpful as otherwise she is tempted to reduce portion sizes.

@Lottsbiffandsmudge I am fully aware that I am not in control. But she won't budge. She gets wild and aggressive and rather eats nothing. We have been there many many time. She is happy to not eat and lose our on other things. She is extremely ridgid. And she gets so incredibly angry. Her sister (with SN) cannot cope at all with the outbursts and it always depends into a mad chaos where both kids are completely besides themselves and I'd takes hours to calm them down. It's hard to explain when one hasn't seen the impact. I just do not cope with it at all. DH isn't involved much and leaves it all to me now.