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Support thread 12 for parents of young people with an eating disorder

994 replies

greydoor · 21/03/2024 15:14

Suddenly noticed the old thread is almost full and thought I'd make a new one.

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11
H0WDOESANYONEDOTHIS · 28/07/2024 07:50

greydoor · 27/07/2024 22:33

Hey @H0WDOESANYONEDOTHIS - I am with you. We are on holiday and having a really stressful time.

It's just an awful kind of life, I don't know how anyone does it. I hate this, and I can't see any way out.

From what I read from recovered people, there is a kind of switch, a decision that they don't want to do it any more. My dd is very far from making that choice as far as I can see. I'm really in the mood to run away.

Hope your evening has been a bit better xxx

I'm sorry you are struggling too. God I wish she could flick that switch

H0WDOESANYONEDOTHIS · 28/07/2024 07:59

Does anyone know of any resources or books to help teens. For them rather than parents?

H0WDOESANYONEDOTHIS · 28/07/2024 08:00

Oh and I really get the wanting to run away. I did last night. Sat in my car for three hours on my own

Mummyoflittledragon · 28/07/2024 08:33

H0WDOESANYONEDOTHIS · 28/07/2024 07:59

Does anyone know of any resources or books to help teens. For them rather than parents?

Have you heard of the charity BEATS? I called them and they were very supportive. There are loads of links and these are suggested ressources. Idk if the self help books would be suitable for teens. Idk if your dd will be able to take any of the self help in so do be aware the brain shrinks when you are eating this level of food. Does she realise she’s ill?
https://www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/downloads-resources/helpful-books/

For advice on self help books or for support yourself, you can call BEATS the ED charity. This is the contact information. The helpline is available weekday afternoons. Tomorrow exceptionally open from 5pm-8pm otherwise it’s 3pm-8pm. They used to be available at the weekend if anyone is reading this as a heads up.

https://www.beateatingdisorders.org.uk/get-information-and-support/get-help-for-myself/i-need-support-now/helplines/

My dd was 15 when this started. she is now 16. She was eating the sort of low amounts that your dd is eating when she was heavily restricting. If your dd is eating the amount you’ve listed, it is below 500 calories and you should take her to A&E. How long has she been consuming this level of food? I don’t want to worry you even more. But that is a very low amount of food to be consuming on a daily basis and you do need to get your dd checked over without delay to see what her state of health is.

As for parental books, we tried the Eva Musby book. Ie getting your dd to sit at the table and watch her eat. This didn’t work for dd, sent her the other way but has been wonderful for others on the thread. The Janet Treasure book Skills based Caring for a Loved One with and Eating Disorder is the one for us. My dd refused to eat what was put in front of her and she still refuses now to eat in front of me. Your approach to get your child to eat will differ. With dd it was taking food to her room, putting it down and saying ‘here’s your food, please eat’. If it was within her time schedule (she only ate after 8pm) she’d eat it. We can only do this as dd is very honest about what she eats, doesn’t hide food, bin food and doesn’t purge.

Have you contacted your GP to get an urgent referral to CAHMS?

Helplines - Beat

Beat provides Helplines offering support and information about eating disorders no matter where you are in your journey.

https://www.beateatingdisorders.org.uk/get-information-and-support/get-help-for-myself/i-need-support-now/helplines

Girliefriendlikespuppies · 28/07/2024 08:41

H0WDOESANYONEDOTHIS · 28/07/2024 08:00

Oh and I really get the wanting to run away. I did last night. Sat in my car for three hours on my own

I did the same thing when my dd was in the midst of it.

To start with it's completely overwhelming.

I wouldn't worry about getting your dd on side yet she's likely to be in complete denial there's anything wrong with her. She will in fact be furious that you're taking control and the ED will ramp up all the behaviours because her anxiety will be through the roof.

It's much better to focus on yourself, read as much about FBT as you can, Eva Musby is the main one for practical advice but there's lots of other books as well on the maudsley approach.

You can do this! Imagine your dd had cancer and was refusing chemo, you would find a way to get that chemo into her. The alternative is she dies which is not an option 🤷‍♀️

You have been getting your dd to do things she has to do to stay alive all of her life. You know what she needs, you can do this, you know her.

You have to find that inner mama lion and fight for your dd. The only way to recover is to get the food in, food is the medicine your dd needs.

You have to cope with her distress (which will be extreme) and tell your dd you know it feels awful but she still has to eat.

There is no choice, the food must be eaten.

H0WDOESANYONEDOTHIS · 28/07/2024 10:08

Thank you. She has an urgent referral to an eating disorder service

I have ordered those books mentioned and yes I have already contacted Beats

Thanks, feeling slightly less alone

Been shouted at already today for walking in when she was in the kitchen 😔

Girliefriendlikespuppies · 28/07/2024 14:13

H0WDOESANYONEDOTHIS · 28/07/2024 10:08

Thank you. She has an urgent referral to an eating disorder service

I have ordered those books mentioned and yes I have already contacted Beats

Thanks, feeling slightly less alone

Been shouted at already today for walking in when she was in the kitchen 😔

Have you started FBT yet? She should be no where near the kitchen....

You take full control, you buy the food, you make the food and you give it to her to eat.

Your dd should be banned from the kitchen and is not allowed any involvement in any food related decisions.

H0WDOESANYONEDOTHIS · 28/07/2024 14:32

Thank you but I don't see how it will work. She says if she can't make her own food then she just won't eat.

We were told that if she is supervised or shows us what's she has made it could work

Cantfindthewordsddstruggling · 28/07/2024 15:02

Girliefriendlikespuppies · 28/07/2024 14:13

Have you started FBT yet? She should be no where near the kitchen....

You take full control, you buy the food, you make the food and you give it to her to eat.

Your dd should be banned from the kitchen and is not allowed any involvement in any food related decisions.

Absolutely agree with this. In addition, I would supervise for a minimum of 30 mins post meals and snacks to minimise the risk of compensatory behaviours such as purging or exercising. It’s absolutely brutal but the lengths the eating disorder will go to can shock you. If you have any dogs keep them away from wherever your dc is eating. The only foods that are not challenged are ones which would not be eaten historically, long before the eating disorder(please be aware that the eating disorder behaviours have in all likelihood been around far longer than you are aware of).

H0WDOESANYONEDOTHIS · 28/07/2024 16:32

Okay thank you. Bit of she is actually eating? I mean it's small amounts but she is eating, is rather that than flat refusal which is what happens when I present anything

Thanks for any help

H0WDOESANYONEDOTHIS · 28/07/2024 16:32

If

Girliefriendlikespuppies · 28/07/2024 16:41

How if you go back to my first post it explains what happens when they refuse.

She will eat it but you have to be very strong.

It's pointless allowing her any control as she's not actually in control the ED is 🤷‍♀️

What she needs for recovery is an absolute shit ton of food, the more calories and food you can cram into her the better chance she has of a full recovery.

I know it sounds impossible right now but trust me we've all been where you are now.

It can be done.

H0WDOESANYONEDOTHIS · 28/07/2024 16:46

God really. I did read your post, about a and e? I just don't know if I can do all this

Mummyoflittledragon · 29/07/2024 05:29

H0WDOESANYONEDOTHIS · 28/07/2024 14:32

Thank you but I don't see how it will work. She says if she can't make her own food then she just won't eat.

We were told that if she is supervised or shows us what's she has made it could work

I hear what you’re saying about refusing to eat unless your dd makes the food herself. It is still worthwhile pursuing what you’re being advised, ie making the food and putting it in front of your dd, the Eva Musby method. It didn’t work for my dd but it was important for us to try as if it works, It can be very successful and absolutely the way people are expected to eat when hospitalised. Ie 3 meals, 3 snacks.

Because your dd is heavily restricting, you should start to calorie count and secretly note down everything she is eating (without her realising) to see how much she is actually eating. I was literally weighing everything and keeping a note before and after of what she’d eaten every day for months.

I get the concept of going to A&E if your dd is not eating enough is scary. However, not going is even more scary. If she hasn’t been checked over, you don’t know your dd’s state of health right now. A&E will at the very least do basic medical obvs to check her blood pressure, pulse and oxygen sats along with blood tests and an ecg if deemed necessary. Less than 500 calories a day puts her in the danger zone. When you talk to CAHMS, they will tell you if you have any major concerns, you need to take her there. Taking my dd for tests (which she refused to do until it became very clear that she either agreed to testing or she would be admitted under the mental health act) was a turning point for her.

I understand it’s very very hard. I was where you are until a few weeks ago and my dd is only at the start of recovery. Right now, your dd doesn’t have capacity to make rational decisions. I understand she wants to be in control of everything but unless she is willing to increase the quantity of those foods, idk how. Did person, who spoke to you tell you how it could work?

In the beginning, I was making food for dd and she was so disinterested in food and she would only eat a handful of safe foods. Being in charge of this, I could very very slowly increase her intake without her noticing, the aim being just to feed her and worry about variety later.

Now dd is more able to eat and has regained the taste for food, she wants to make her own food and this is working because it puts her at ease and she eats more. She still doesn’t want to eat in front of us because it is too anxiety inducing and will only do so if at a restaurant. But as I said in an earlier post, we are ok with this only because she is 100% honest about eating the food, doesn’t hide or flush it away and doesn’t purge. She has upped the variety of foods albeit still limited.

Dd is being treated as though she has autism and pathological demand avoidance (PDA) and cannot handle not being in charge of the type of food she eats. We are doing this under the guidance of a private eating disorder specialist. She says it’s modified family based treatment (FBT) and someone with PDA will find having the food chosen for her is too anxiety inducing. In fact I have never been able to decide what dd will eat.

Apart from the ED specialist, we have had a lot of external help from dd’s friends. There is no way that we could do this alone and there is no way dd could have been in charge of making her own food and upping the quantities.

My dd was very shut down, constantly really nasty and still will get very angry when food is talked about. This is all very normal and it is important not to react to this, not to give into the ED, which wants you to get upset or angry as it detracts from the goal of getting your dd to eat. If you live with a partner, it is also important to both be creating a United front. Right now, you’re not dealing with your dd, you’re dealing with an ED and the book with a long title I mentioned works for dd explains what that means. Your dd is there somewhere beneath but she’s being controlled completely by the ED.

When you have time, I would suggest you read through this thread. I posted for the first time about dd’s ED on this thread so posters kindly gave me a lot of insight into what is happening in an ED. This would also be useful for you too.

Shanghai101 · 29/07/2024 09:28

So sorry that this is happening to your family @H0WDOESANYONEDOTHIS. The advice above and re FBT is sound advice. If possible sign yourself up for a Carers workshop or support group with BEAT, FEAST or the Charlie Weller trust. All online. Or your local ED service may run them but please ask rather than wait. You’ll get the confidence you need to support your child. Also look up the Dr Laura Hill Ted Talk on what an ED sounds like to your DD. It will help you understand her distress.
You need to normalise eating again. The meals that were first to go e.g. breakfast (getting up late) or lunch (skipping it at school) will be the hardest to reintroduce.
Your DD is 15 so, unless there is severe ASD/PDA as Mummy describes, you can take control. Distract her as much as possible after eating as the disordered thoughts are very loud then. Play games, watch tv, do art etc. she needs short term goals for motivation.
Dont comment on how she looks even if she looks awful as this feeds the ED. Equally don’t tell her she looks well once she starts to eat. This will frighten her into thinking she is fat. Limit your compliments to her hair, clothes etc.
I would advise family therapy for you and your DD as the distress you will witness and the hatred that will come your way as you try to refeed her is like nothing you can imagine. And unless someone has been through it they cannot understand it. But you need to understand that it is an illness and separate your DD from the ED that is causing the irrational behaviour. Eventually she needs to separate herself from the ED but that will take time and her brain will need to recover. Good luck and ask as many questions as you like here.
And re. your username I really don’t know how anyone does this, particularly for a loved one, but we do and it works

H0WDOESANYONEDOTHIS · 30/07/2024 11:30

Shanghai101 · 29/07/2024 09:28

So sorry that this is happening to your family @H0WDOESANYONEDOTHIS. The advice above and re FBT is sound advice. If possible sign yourself up for a Carers workshop or support group with BEAT, FEAST or the Charlie Weller trust. All online. Or your local ED service may run them but please ask rather than wait. You’ll get the confidence you need to support your child. Also look up the Dr Laura Hill Ted Talk on what an ED sounds like to your DD. It will help you understand her distress.
You need to normalise eating again. The meals that were first to go e.g. breakfast (getting up late) or lunch (skipping it at school) will be the hardest to reintroduce.
Your DD is 15 so, unless there is severe ASD/PDA as Mummy describes, you can take control. Distract her as much as possible after eating as the disordered thoughts are very loud then. Play games, watch tv, do art etc. she needs short term goals for motivation.
Dont comment on how she looks even if she looks awful as this feeds the ED. Equally don’t tell her she looks well once she starts to eat. This will frighten her into thinking she is fat. Limit your compliments to her hair, clothes etc.
I would advise family therapy for you and your DD as the distress you will witness and the hatred that will come your way as you try to refeed her is like nothing you can imagine. And unless someone has been through it they cannot understand it. But you need to understand that it is an illness and separate your DD from the ED that is causing the irrational behaviour. Eventually she needs to separate herself from the ED but that will take time and her brain will need to recover. Good luck and ask as many questions as you like here.
And re. your username I really don’t know how anyone does this, particularly for a loved one, but we do and it works

Thank you for taking the time to reply.

We have a follow up appointment with the eating disorder service later so I'm hoping we can make some sort of plan.

So far she has refused breakfast, last night refused dinner and made her own, same with lunch.

I have looked at all the things you are recommending and will go through this thread now too.

I am breaking, you must all be seriously strong.

H0WDOESANYONEDOTHIS · 30/07/2024 11:36

What is wfh please?

Cantfindthewordsddstruggling · 30/07/2024 12:11

H0WDOESANYONEDOTHIS · 30/07/2024 11:36

What is wfh please?

@H0WDOESANYONEDOTHIS

https://anorexiafamily.com/bmi-weight-for-height-wfh/

where my dd is being treated they are wanting her back to where she was on the growth chart prior to the eating disorder. She has always been 75th percentile.

What do BMI and Weight-For-Height mean?

What BMI and Weight-for-height (WFH) mean, and how they cannot be used for advice. Read this if your child’s therapist uses BMI or WFH

https://anorexiafamily.com/bmi-weight-for-height-wfh

H0WDOESANYONEDOTHIS · 30/07/2024 12:43

Okay thank you

They said she is 80%, I guess that is what they were talking about

WoodenTrain · 30/07/2024 16:23

ED Team finally managed to get physical observations done on DS - he’s lost 2kg in the past 3 weeks 😭

Took months to gain that weight and then just like that it’s gone

Girliefriendlikespuppies · 30/07/2024 19:45

On no wooden 😥

How 80% wfh is very low. I hope your appointment goes okay this afternoon, has your dd had all the physical checks - bloods, bp, pulse and ecg?

If she is refusing the meals you're giving her you will need to take her to a&e as they can become seriously ill very quickly.

Girliefriendlikespuppies · 04/08/2024 18:05

How's everyone doing?

Curlyhairedassasin · 04/08/2024 18:27

having the holiday from hell (staying with family a bit further away from home). DD is eating but it's all a further restricted version of her meal plan. I think she lost a bit more weight but not sure. Her mood/depression is awful. Loads of crying, getting aggressive, shouting etc. She has not mentioned the hallucinations loads recently so I think (hope) it's a bit better. Her dad is on a 6 week solo holiday in the Mediterranean and has decided to block us on his phone today so we cannot disturb his holiday.
DD feels utterly rejected and keeps crying and asking why her dad doesn't love her. What am I supposed to say?
I have no idea what he thinks he is doing. I just don't know how to handle this any longer. DD is utterly broken. I noticed she hasn't self harmed once since left us for his extended holiday (which was one week before the school hols started).Any thoughts on this? I cannot see the wood for the trees.

DD1 (ASD and learning diffs) has her usual holiday up and downs. a couple days more and then we fly home. I came here with my batteries pretty low but I am utterly drained now.

Hope others having a better Summer!

H0WDOESANYONEDOTHIS · 04/08/2024 18:44

Oh god, it's awful isn't it. Im sorry you're having such a shit holiday. Life seems very unfair doesn't it.
As I have said, I'm at the beginning of this but what the hell is this meal plan? She won't do a single part of it, makes all the rules and eats the same things she always has, if we prepare anything she won't eat it. I reckon wages in 700 calories now. Constant shouting and screaming at us, breaking my heart

H0WDOESANYONEDOTHIS · 04/08/2024 18:46

What are the hallucinations about Curly?