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

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

Mummy I'm sorry you've had that experience, most people ime do not understand anorexia at all and automatically blame the mum. That said I personally would not be involving or texting dds friends although I appreciate you've felt their support was useful.

I don't think most adults really understand the illness so I would not expect teens to at all plus I'm not sure it's fair to expect them to be dds support through what is a very complicated illness.

One of my dds best friends also developed anorexia and I text her mum a few times but I actually felt like I didn't want to get too involved as it was very triggering for me and dd.

It's crap all round and that mum sounds unhinged so I would block her personally.

Your judgement re the sleepovers, walking, going away and dancing sound spot on so trust your instincts.

@Mumofellie
I hope dd will eat a little more and start to understand just how abusive this woman is. August is a long way off so I will just bide my time.

@lyriccat
Dd has finished her GCSEs and I agree she should be pretty much doing nothing / on bed rest. The issue here is that she is a very sociable child. Normally she’d be out and about with friends most days - in town, at friends houses, going for long walks, taking the train to a city 30 miles away and now she’s older, going to festivals for the day etc. I think she’s nearing the end of her capability to do things and the rest will soon be forced upon her.

@Girliefriendlikespuppies
I understand what you’re saying about contacting dd’s friends. I don’t intend to keep doing so. Dd is highly sociable and the only other option was to prevent her from going out with friends at all, which could fracture the relationships with them and dd with me. I am coming at this knowing what it is like to be abandoned by your friends at dd’s age. My father died at her age during a break in my exams (I’m presuming that must have been half term). Apart from the girl I was hanging around with, not one girl contacted me after the exams ended and I was utterly bewildered. It was like I no longer existed and I am trying to not let this happen for dd.

As I say, I don’t intend to keep contacting these kids and I understand what you’re saying about adults not getting it, let alone teens. I said what I wanted to say from a safeguarding pov, as I’m safeguarding for all concerned as it would be awful if dd became ill whilst she was with them. I was only asking the girl to be careful of her step count. She was the one, who dragged dd around on a long walk a couple of weeks ago, 21k steps that day... not that I mentioned the walk to her. In any case she ignored my request and went on a 3000 step walk with dd between midnight and 3am. I understand dd made a choice to go on the walk so this isn’t about blame. Dd has decided this girl is her absolute best friend and they recently discussed starting to go to the gym together because I told dd she couldn’t go dancing…

I am coming to the realisation the girl is very intelligent and I am questioning if she is actually quite manipulative. Girls can be so subtle and dd fell prey to another girl a few years ago, which turned very nasty. In any case, I want to put some boundaries up with her to protect dd from the walking. I need dh to support me on that too and he constantly thinks I’m overreacting to things and doesn’t think the midnight walk is something we should focus on as we have bigger things to think about. I otoh think it’s part of the wider picture.

We have a zoom session with the therapist on Thursday so I’ll be bringing that one up as a discussion topic. One of the things the therapist said to me is that I need to let dh support me as she can see I’m shutting him down. This is because when I do try to get his support, he accuses me of overreacting. So it’s easier for me to make all the decisions myself. In any case, this is stuff she needs to hear to be able to help us.

As for the stepmother, the only reason I haven’t blocked her is in case she needs to contact me if dd is at her house… not that I want dd going there when she’s around. And dd hasn’t as yet. I’ve changed my messages so that people can’t see if I’ve read them or not and as soon as I post this, I am going to change my WhatsApp for her so she can’t see if I’ve been on there or not.

I forgot to add @lyriccat that is awful for your dd. You must have been so worried. I’m so glad she has managed to gain what is actually quite a lot of weight. Did the GP get anywhere with the complaint? Or is this not something you’re privy to?

Morning @lyriccat my daughter was 34.4 when we went to our first CaMHS meeting which was the assessment but they were that worried about her they admitted her straight to hospital we had to come home and get her stuff and take her straight to hospital. She spent almost two weeks there. We was eating one meal a day but when in hospital for first two days it was three meals a day then day 3-4 she had to have a pudding aswell at dinner and tea time then day 5 she had to also introduce 1 snack then day 6 had to introduce 2 snacks so by day 6 she was eating three meals, 2 puddings and 2 snacks a day and she has stuck to that since being allowed home. We have a CAMHS meeting once a week but she doesn’t really want to speak to them so she goes with one lady that she likes and has a talk and I speak to the other two in the ED team and they help me and give me advice on things. They know my DD doesn’t want to be there or go to the meetings and she also doesn’t want to know her weight and before she was admitted she was getting weighed 2-4 times a day so she asked me to move the scales and hasn’t asked for them back

@Mummyoflittledragon Things sounds very complicated for you. I understand your worry with friends abandoning your DD if she doesn't see them, but it's also unhealthy for her to be that active with them. Would you be happy with asking her to invite girls to your house rather than letting her go to theirs? That way you can monitor how much energy she's expending. You could suggest sit-down activities like watching a film. I know how difficult it is to get DD to agree, though. My DD still thinks I 'coddling' her when I'm just looking out for her safety.

@Mumofellie My DD is the same with appointments. She has refused to go to CAMHS and the ED clinic for almost a year now, except one appointment when we thought she was going to be admitted. Now she's in outpatient they weigh her there, and we're planning to take her to the GP for weigh-ins once she's been discharged.

@lyriccat it’s hard isn’t it, luckily my DD doesn’t refuse to go to the apps but she just hates them and doesn’t open up to them at all she’s never been like that so isn’t gonna start now. We go ones a week and they do blood pressure and weight so luckily she does go so I can how things are going

@Mumofellie
Has your dd made any progress with eating a little extra? It sounds as if she is still doing well with her eating and you said her weight wasn’t going up despite this food intake. It does make sense that it takes a lot to renourish the body once things have gone to a certain point and now that you have said your dd’s weight in April, I’m not surprised she was admitted directly.

I’m thinking dd is slowly getting to this point albeit she was 49.5 kilos 2 and half weeks ago so if the loss has continued at the same rate, she would be down 2 to 2.5 kilos so perhaps 47 / 47.5 kilos… but a lot of that is still muscle and her muscular skeletal build doesn’t predispose to being this tiny.

@lyriccat
This is what we are mostly doing now dd has finished school. Friends sleeping over here so that dd is at home. She isn’t going out as I described above anymore, it’s what she normally would be doing were it not for the ED. And to a certain extent what she was able to do until relatively recently. Dd had a friend sleepover on Monday night who left in the morning and 2 other friends came over for day and slept over. They just stayed in dd’s room, watched a film then went to the cinema in the evening. So lots of rest.

I went in dd’s room yesterday to talk to her and her friends briefly to ask they what they were doing / whether they needed food, a lift etc. Her 2 friends were discussing boys, chatting animatedly, telling me about the latest boys they like and one is dating. Dd was just lying there completely spaced out, not joining in at all. It is difficult to see and I can’t deny that I’m really struggling emotionally with it especially as dd is really vile to me.

We filled in a form earlier for the ED appointment for dd later today and when I queried the 2 questions that she said she hasn’t been violent or threatening in the past week, I asked her what about me. On both occasions she said I didn’t count as I’m a non person. For some reason, stuff like this cuts deeper than calling me a cunt and telling me things like every day she wishes me dead. I am disabled and have chronic fatigue btw so pretty vulnerable.

In all this, dd is in real denial that she can’t do what she used to do. She has sixth form week soon and prom. Idk if she will manage these. She also wants to go to a party and sleepover at a girl’s house on Friday. She managed this over half term at another friend’s house… I spoke to the girl’s mum and she was happy to have dd and she made special provision for dd to sleep in her dd’s room with one other girl so that dd had a proper sleep. But dd seems to have deteriorated since then. And I am even more nervous now. Another thing I think to discuss with the therapist tomorrow.

Dh and dd have gone on their own in the end. It’s only for dd, not dh and I. As I say, that’s tomorrow. I woke up with a migraine and am in bed and dd’s friend, who was supposed to come over to look after the dogs is ill. It’s almost a 3 hour drive so I’m better off leaving them to it as dd is a lot more cooperative with dh.

@Mummyoflittledragon hi, she is almost upto 40kg now so has put some on, CAMHS want her to up her eating every week despite eating 3 meals 2 snack 2 puddings and supper each day and the weeks she didn’t up it or change something to something with more calories it either stayed the same or she put 200g on. I’ve learnt that this is because her body is using the energy she is giving it to repair what the ED has done to her body so depending what the body is recovering depends how much energy is used for this. After last weeks app they told her to just keep doing what she did last week this week and then we can assess it at the next app as they don’t know how much her body is going to use to repair what it needs to if that makes sense

@Mumofellie Idk what date your dd was admitted. You said April so I’m guessing about 2 months ago. That reads like pretty good going but this is still so new to me. I imagine it’s very hard for her and I hope she is letting you hug her. I miss hugs with my dd.

@Mummyoflittledragon yes beginning of April so just over 2 months. I’m not sure what’s normal as CAMHS say everyone is different so there’s no certain weights she should be by now. She’s literally with me all the time when I’m not at work. We sit and watch films or go out shopping (in wheelchair with still being in bed rest). She does let me hug her every now and then but she’s never been a big hugger lol . She never really pushed me away thank god not sure id have coped she’s just snapped every now and then. I really hope your daughter sees soon that you are only trying to help her and hope she lets you hug her soon hun that must be so hard.

@Mumofellie I’ve obviously got no idea what is normal either and maybe there is no ‘normal’ and as you say it varies depending on how much the body needs to repair. I suppose it’s just little by little.

My dd doesn’t want me anywhere near her. I just leave her as much as possible to her own devices watching tv and to eat in her room even though I want to be around her. But she won’t let me. She will physically throw me out. I do hope she will let me hug her soon xx.

@Mummyoflittledragon My DD was just the same in the early stages, swore at me and slammed doors in my face, as well as my DH. Please remember you are not to blame, it's the wicked illness taken over your innocent DD 💔

Was going to ask, had anyone had experience with your son/daughter taking antidepressants with AN? Is there a chance it could make eating disorder thoughts worse? We've been offered meds by CAMHS but haven't yet discussed potential side effects.

Thanks @lyriccat it’s so hard. ❤️ I hope your dd is calmer with you now. I can take the name calling and wishing me dead. The thing, which hurt most of all was filling in the forms yesterday when she ticked the not been violent and not been threatening over the last week and I said, what about me. She said that didn’t count as I’m a non-person. 😞 I think it hasn’t helped that I had a migraine yesterday so I’m feeling really vulnerable.

@Mummyoflittledragon ye each ED recovery and ED in general is different for everyone is it. Wish is wasn’t sometime and there was just a quick fix. I just can’t wait till my DD is out of the danger zone

I’m sure you can’t wait. I hope it won’t be long now@Mumofellie :)

I’m running on empty. Still awake at 4am most mornings and then up with dd at 7am and I get the “pleasure” of listening to dh snore all night which adds insult to injury when he complains he didn’t get much sleep.
dd is at her highest ever weight so that is progress but I think that even although she’s compliant the eating disorder is still wreaking havoc. On the downside, my weight is at an all time high probably dangerously so. I’m comfort eating(although not entirely sure how much it’s helping given the fact I burst into tears most nights once dd and dh have gone to bed for the night). I don’t know how to get myself out of the rut.
My life is so far removed from this time last year. I had a job I enjoyed and was exercising regularly doing a sport I loved.
We caught up with family at the weekend who don’t know about dd. Comments were passed about their daughter’s friend with anorexia. I nearly had to step in.

I hope I can jump on here, as I could really do with some support.

DD, 16, autistic, wait list for CAMHS after an overdose in February, wait list for Early Help. Not attending school (hasn't for 18 months). Had an urgent referral to Eating Disorder clinic last week, and had an assessment on Friday.

She's lost over a stone in two months, is now 44kg. Binges when she's disregulated and then controls calorie intake and exercises excessively. Most recently, her calorie intake was down to 300 a day :-(

Her resting heart rate is around 40bpm, her hands and feet are freezing, her skin is awful - she's pale, developed spots, bruises aren't healing - her hair is falling out, she's dizzy and tired, showing signs of confusion.

I'd been treating each individual symptom without realising how much she was restricting - for months she's taken control of her own food, and as this seemed to be a move towards independence, I supported it. She's seen 3 GPs about her heart and the bingeing, it was only the last one that made the referral to the Eating Disorder clinic.

I've just heard back from the clinic. They DON'T think it's an eating disorder, believe it is her autism and that we should just stop her exercising and encourage her to eat more (because it's that easy, right?!). Their paperwork says they won't offer support if the eating disorder is secondary to a learning difficulty or anxiety.

I'm in tears. She is desperate for help - the restricted eating is because she wants a professional to help her. I'm not going to tell her that they don't think it's an ED, because it will make her worse - she'll either get sneaky about food, or she'll find another way to harm herself.

I've been taking control of her food in the last two days, giving her around 2500 calories in the hope of her gaining weight and reversing some of the damage she is doing. She has just screamed at me that I am making her fat.

I'm at a total loss as to how I do this on my own.

@WhatsitWiggle so sorry to hear you find yourself in such a desperate situation with dd. My recommendation would be to aim for 3 meals and 3 snacks a day moving forward. Continue taking control of everything she eats. We add a 250ml glass of fruit juice(make sure it’s 100% fruit juice and not cordial or a juice drink) with breakfast, lunch and dinner.
add cheese, avocado, cream to anything you can. The only items you don’t provide are genuine dislikes from pre eating disorder.
To be honest I’m really surprised she’s not been admitted to hospital given her heart rate and her rapid weight loss with minimal food intake recently. Did the gp arrange for any blood tests?
hopefully someone more knowledgeable will be along soon to help

@Cantfindthewordsddstruggling I'm so shocked, honestly. When I realised that the heart rate was as a result of calorie restriction, I had a panic attack whilst she was in the toilet, convinced that she was going to die over the weekend.

The GP did some blood tests previously but only for thyroid which came back normal. We've got more arranged for two weeks which was booked two weeks ago (honestly the wait times are ridiculous).

Thank you for reassuring me I'm on the right lines. There was nothing on Friday, and I couldn't believe I was being sent home with the knowledge my child really was quite poorly but no advice as to what to do straight away.

I've taken control of her food. Told her she can be involved in the meal planning, and help prepare food too, but if she can't make her mind up, I will serve her something based on what I know she has eaten recently. With the autism, she's quite picky - tastes and textures limit what is acceptable even pre the restricting calories - so I'm working within what I know is tolerated. Luckily, this includes some high calorie foods - she loves peanut butter, nutella, biscoff spread but hasn't been allowing herself to eat them, so I have been very generous in the portions! Hidden the bathroom scales.

I've downloaded the Eva Masby book too, only up to chapter 6 at the moment, but it is reassuring especially when you read the exact abuse that your child is hurling at you, and know it's not personal.

@WhatsitWiggle I have read your post but wanted to respond to one part urgently before I have to head out. When symptoms are so acute the approach is not to give the person with the eating disorder any input into meal planning, meal prep. We didn’t allow dd into the kitchen except when we were handing her meals to her. Any choice during the acute stages of anorexia can be completely overwhelming and add to the stress. Even if that does not appear to be the case the eating disorder will still wrestle for control if dd is permitted any input. Once weight restored and more stable, dd can begin to have input with the goal ultimately being independent eating

Hi @WhatsitWiggle sorry to hear you didn't get any support or advice. Sounds like you've made a really good start, but I'd echo what @Cantfindthewordsddstruggling says about meal prep - if you can it's best to keep dd away as making a choice invariably means them tying themselves in knots trying to get the lowest calorie option... I still prepare meals without dd being present most of the time, it's easiest to just present them to her. 3 meals and 3 snacks, lots of animal fats like butter, cream, meat and fish as these are good for restoring brain function. If she has been eating very little recently then it's best to build up nutrition gradually I think, although we didn't go gradually as I was in such a panic about my DD's heart rate and the other symptoms. I read a post somewhere about the first phase of fbt "if you have to drive through hell, drive fast", and that's what we did. Post on here if you have any questions or need support - it's invaluable. The first couple of months were hellish for us and the support here really helped.

Can't so sorry to hear how you're feeling. But, are you me? My dd is weight restored and then quite a big bit, is eating what we give her but not a crumb more, and will take any opportunity to eat less if she can. Her mood is really variable and I am finding that I feel broken. Like you I'm in tears quite often, and I feel completely lost. I've just agreed that I'll take some time away from work (I have a job that I love) to try and recover because I can't manage all the spinning plates at the moment. It's almost a year since we started and I am really depressed at where our lives are, completely centred around ed. Can you find a way to take some time for you? I need to lose a lot of weight myself now too, I have gained so much. When I'm off I plan to try and take care of my body a bit better, and get myself back into a place where I can manage to look after dd better.

Hi wiggle sorry you've had to find us.

I would encourage you to contact PALs as discriminating against your dd because she has autism is not okay. Anorexia is very much a biological illness and it does not matter if you are autistic or not.

It sounds like you're off to a great start with taking control of the meals. My dd is also (I suspect) autistic and you can use the autism to your advantage. For example my dd is very rule based so once the rules where established she really didn't challenge them very much.

The rules were she had to eat 3 meals and 3 snacks a day, she was not allowed to know her weight, she was not allowed in the kitchen, she was not allowed any involvement in food preparation.

Tbh other than checking dds weight and obs the ED clinic didn't really offer us much else. As a parent you are on your own with this, you become your child's feeder and carer. It is all consuming and every waking minute is spent worrying about your child, it's exhausting.

The upside is if you can get this bit right (refeeding and weight restoration) it is amazing to watch your child come back to you and gives you that incentive to keep going.

We're 4 plus years on from where you are now so through the worst of it but I remember the black days like they were yesterday.

@greydoor sorry to hear that you are struggling too. I caught up with a friend for breakfast this morning at a local cafe. That’s the first time this year I’ve actually done anything for myself. She doesn’t know that dd isn’t well so I was at a bit of a loss to say what I’ve been doing when she asked me what I’d been up to since my life revolves around appointments, food shopping and school drop offs and pick ups . Best I could do was talk about our summer holiday next month. 😂.

Has your DC had bloods and an ECG done? Low pulse, cold etc is a clear sign that the heart is struggling. If you haven't had those done, I would go to a&s today. There is a protocol of tests for Eating Disorders. I absolutely would not wait until Friday. If ECG and bloods abnormal, she will be admitted.

DD was heaving restricting last year and we had an emergency admission when her puls was just under 40, she was stone cold. Her ECG was abnormal. This is very dangerous .please do not wait and present to a&e today.