Support thread 16 for parents and carers of young people with an eating disorder

[Mummyoflittledragon]

The old thread is almost full. I hope no one minds me starting a new one…

Thanks for all your comments. We are trying to limit her exercise which is just walking, at the moment she walks to sixth form half an hour each way, do you think even this should be stopped?

I would yes. Not just from the point of view that it might not be physically safe but every calorie is precious - you want her to burn as little as possible to help her restore the weight.

At BMI 14 I would imagine they might say a max of half an hour walking a day. I had a walker too, I think lots of us do. But that I think is because otherwise they'd walk 8 hours a day, rather than stopping a reasonable journey to do something. If your DC is already eating, but not enough, I'd focus on building on that foundation with calorie rich food and drink, and keeping the lines of communication open until you get specialist support, which should come very soon. It is hard, because 14.1 is at the lower end of what is ok in the community and I'm sure this will be very worrying for you. The biggest impact is always going to be intake though, but I think they are likely to recommend severely limiting exercise

@Worriedmum2026 Sorry you find yourself here. Recognising there's a problem and reaching out for help is the first step in supporting your DD, you're doing the right things
We found the early stages a whirlwind as the necessary medical checks were done and camhs kicked in. Stopping exercise and prioritising appointments and eating over school and everything else is daunting but necessary. As @Weightlossworried said, distress after eating is common. We have puzzle books on standby still now, we do daily online word puzzles to kick start breakfast, and DH and I have watched more trashy teen TV than we ever expected to! In the early days we sometimes needed a stroll around the garden to break a deadlock. All this is to get as close to 3 meals and 3 snacks a day as you can, reassuring your DD this is what she needs and repeating that day after day until her brain has the nourishment to recover
Take care. We've all been where you are and are walking slightly different paths but have gained tips and wisdom along the way to share xx

Welcome @Worriedmum2026 . Hope your referral comes through soon, you must be worried. It feels daunting at the start and like your life has been taken over.

My DD is in the early stages of refeeding having had one hospitalisation and then a relapse. Now trying again after she was told they were considering an eating disorder unit if things did not improve.

one thing I have learnt with my dd is that I should never try to offer her something smaller to ease her distress no matter how much she protests. I fell into the trap of doing that a few times but it actually makes her feel worse. She sees it as me saying she is “fat” and that she should eat smaller things because she is too big. That’s of course not true. What makes it harder is that she’s constantly asking/telling me she’s is eating too much and feels disgusted with herself etc. and analysing everything she eats.
i have to keep her constantly distracted but there are times no distraction will work. At weekend and holidays we have to be active 24/7 - she cannot sit with the discomfort at all.

The next thing I want to tackle is the walking. My dd walks to as many places as possible and constantly paces up and down in the house. She also finds it soothing as well as trying to burn calories. She refuses to listen when I ask her to stop but I’m increasing my efforts to try to limit it.

good luck with it all - keep us posted of how things go

@Worriedmum2026 I hope your DD engages with the team and that she is open to support and help.

An update on us. We've had a call with the CAMHS team manager. As we thought she couldn't say much. Our DS has been very very insistent that they don't talk to us about anything (she said that is quite unusual).

The crux of it is that he hasn't engaged with the service and so he has been discharged. She is having a meeting to discuss this and to see if he should be re-referred. However, I don't think he will agree to it.

Where we go from here I've no idea. I feel like we're just waiting for something awful to happen.

@Worriedmum2026
Yes, definitely find a way to stop the walking for the moment. An emaciated body shreds calories. More than a teen girl, who isn’t restricting. I did not let my dd walk 10 minutes to the park at one stage. And when things got so bad, she didn’t have the energy to go anywhere and basically had to stay in bed (bed rest).

Your dd is still a child and that bmi of 14 is very low. CAMHS will measure a weight for height rather than bmi as she’s under 18. The red book stuff. 100% means a child is on the same centile for weight and height. And idk if your dd ever sat at that point, but that will be what they’ll work towards.

From my experience, your dd will cope until a moment comes, when potentially she won’t. So better to conserve her energy as @Weightlossworried said. And let her put on a bit of weight. Then she can maybe walk part way there after a decent breakfast. And build it back up. I get that may all be hard logistically.

Is this the only exercise she gets btw. You can see from Yellow tulips that compulsive walking is a thing. So this is to be discouraged from becoming a habit.

@10YellowTulips
My dd never had a big issue with this. Jenny does a session on compulsive exercise. Idk if you can tell your dd the walking is too much and you’re considering stopping it altogether. And get your dd to agree to reduce the pacing by allowing her to go on a short daily walk? I do remember Jenny saying that pacing in the house doesn’t burn as many calories as we may think. Is there anything you can do to break that cycle. Cuddling her, watching movies etc? It must be hard.

@littlebabycheeses99
I’m so sorry. He just is too anxious. Even if it appears otherwise. My dd was the same. It is terrible that those unable to engage aren’t helped more. There are similarities between his reactions and my dd’s. The gentle dolphin, nudging approach (they use animal metaphors) will probably be best for him I think. She also does sessions on Autism. Once you’ve done the 5 part, I would book on these as well. This advocates for an even more gentle approach.

It is a very complex area. And I had to completely shift the way I speak to my dd. And my parenting. Less is more. It’s about finding the connection first. So basically love bombing right now. Jenny and one of her colleagues (Catherine O’Dea Hughes from Charlie Waller) also do small group sessions for a fee. And considerably less than we pay the 121 support for the coach. You will get a lot more out of it if you have completed at least some of the 5 part course first. They work specific problems from participants in more detail.

I get that doesn’t help for now. But please consider the suggestion upthread to take your ds to A&E for obs the next time he is really drunk.

@Mummyoflittledragon thank you, will look into all of that when I feel up to it. I just want to retire to my bed at the minute!

Can I ask people have found friendships to be whilst going through all of this? I feel like my friends are just fed up of me being miserable now, and a couple have definitely stepped back. I didn't have many friends to begin with so am feeling quite alone to be honest. Unfortunately my family don't live close either.

@littlebabycheeses99 I'm glad CAMHs called you, albeit with news you didn't want to hear about discharging him. I hope they rethink that with the re-referral.

I'm sorry your friends are being crap. I'm not seeing a lot of mine tbh. I tend to isolate myself a bit when I'm struggling.

We had an appointment with the psychiatrist today. DD refused to be weighed. He was quite nice and helpful though, we were there a long time while he asked lots of questions. He's advised us to try and up her intake of the stuff she feels really comfortable with - like the bowls of fruit and then we can keep adding to it.

He said if she doesn't start increasing her intake and making some progress maybe we do need to look at her not going to college. I don't disagree really, I think we're in danger of ending up in a situation where she's just living with the eating disorder and I'd rather take some big risks to try and get her better than just accept that.

@littlebabycheeses99 have you asked about at what point your ds could be sectioned? He sounds very unwell and is definitely posing as a danger to himself. Being sectioned and ideally placed in an ED unit might be what’s needed to turn him around, it sounds like it’s gone passed the point of vague/non existent community support tbh.

Im sorry your friends are being a bit useless, I just think other people don’t get it. I had some friends say the most ridiculously insensitive things to me when dd was ill (she’s just doing it for attention/she looks alright to me/id just leave her to get on with it 🙄🙄🙄)

I learned not to talk about it that much tbh and relied on this thread and other online places for support.

@Worriedmum2026 hi your dd does sound very underweight, yes to stopping walking to college and potentially even going to college while you are trying to increase her weight. Can you tell us her weight and height and we can probably work out a weight for height.

Has her GP checked her bloods, done an ecg and checked lying and standing bp?

She needs to be eating 3 meals and 3 snacks a day, high calorie and high fat.

@Weightlossworried I agree as well, also increasing low calorie food like fruit isn’t going to get her brain better 🤷‍♀️ she needs all the old school stodgy foods like syrup pudding and custard! The ED has to be forced out, have you watched Stranger Things? It’s a bit like Joyce getting the mind flayer out of Will by turning the heat up 🙈

If conditions are too comfortable the ED just stays put and recovery is more protracted imo.

@girliefriendlikespuppies yes she has had her bp, resting heart rate, ecg and two lots of bloods done. Her height is 5ft 4 inches and she is 5st 13lbs at the moment.
we have started on 3 meals and 3 snacks and are averaging 1700-1800 calories a day up from 1200-1500 until we have the referral through

@Worriedmum2026 if those figures are accurate your DDs wfh is extremely low 69% which is generally hospital territory. My advice would be strict bedrest and build up the calories every day. If the bloods come back iffy it’s likely they will want to admit her.

If your dd feels faint, cold, breathless, dizzy call 999.

I don’t want to scare you but she sounds really unwell.

Gosh that is low @Worriedmum2026 I agree she sounds like she should be on bed rest. I hope the referral is quick.

@Girliefriendlikespuppies His idea was that we build on her safe foods rather than try and add in anything new. We've never been able to get to eat anything like sponge pudding unfortunately - it's not something she'd have had before very often either. But even stuff she did like, cakes, trifles etc, are a steadfast refusal.

I agree she definitely is too comfortable though. I'm going to start giving her dinner leftovers for lunch and up the amount of crisps she has as well as the fruit. I think we'll have considerable push back even from that but we can't carry on like this.

@Weightlossworriedi think refusal isn’t a reason not to put the food in front of her tbh 🤷‍♀️ making puddings a normal part of the day was one of the ways i got dd eating cake/deserts/chocolate etc.

Just dish it up and put in front of her, don’t even look at her when you give it to her. It helps if everyone else in the family also eats it.

You have to keep pushing and you also have to believe that she can do this, she wants to eat it, she just needs you to tell the ED to fuck off and tell her she has to eat it.

I put the food in front of dd and she banged her head against the wall, scratched her arms, screamed obscenities at me, threw food at me, ran out the house. But I just did not back down, even when I was terrified and exhausted she had to eat it and that was that 🤷‍♀️

What normally happened was she’d throw everything she could at me (literally) but the next day would be slightly easier and I gradually increased portions and the range of foods.