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

[Curlyhairedassasin]

New thread as old one is filling up

Well. After a few shitty weeks, I’m not sure what switched has been flicked in my daughter’s brain but she is a different person. Or more accurately, she is her old self again. I’m in disbelief.

She is about 1 kilo off her set weight, and her last home leave last weekend, and this weekend, are like night and day compared to the ones we were having before. She is letting me make her food, she is barely setting foot in the kitchen. She is eating what I make with barely any complaining. She is happy and chatty and playing with her six year old sister. She is talking about her future and how she can’t decide if she wants to go into animal care or human healthcare of some sort. She has twice uttered words such as ‘I love those cookies’ (relating to some white chocolate and raspberry cookies I’ve made) and ‘I love carrot cake’. She actually asked to have her snack yesterday afternoon as she wanted to have it before going to play in the garden with her sister. And the absolute cherry on this cake is that last night she presented me with a handmade Mother’s Day card, which had this written inside. I have no words, but I appear to be getting my daughter back.

@SendTheNextOneIni’m crying for you, there is light at the end of the tunnel ❤️

That’s beautiful @SendTheNextOneIn ❤️. It gives us hope. X

@SendTheNextOneIn this is so wonderful to read. I’m so pleased for you all xx

Hi - sorry to burst in unannounced but my 15 year old (year 10) is showing definite signs of an eating disorder and I wondered if I can join you for some support.

I weighed her last night and she is 5 foot 9 and 7 stone 9 which is very underweight. She got very tearful when we talked about it, said she has never thought she is fat but just didn’t want to get fat. She saw “reels” which made her feel like she shouldn’t be snacking between meals and should be eating more healthily and made her feel bad for not doing so. She said she stopped watching them once she realised what they were doing to her, but in her words “the damage was done”. Her friendship group also “competitively undereat” in her words, which she says she has not been joining in with verbally. Whilst she has been eating with us as a family and taking a packed lunch to school, everything has been very “healthy”. She has also started running, nominally for her Duke of Edinburgh activity and has loved it, but that of course has made her drop even more weight. I feel like this has been over about the past 3 months. She was definitely OK over Christmas.

She seemed almost relieved that it had come out and said that she does want to run so is open to eating more. She has taken the day off school today as she is just emotionally and physically exhausted and is at home with DH. I have a face-to-face appointment booked with her and me next week Wednesday with her at the GP (I did say suspected eating disorder, no periods since January, very underweight and apparently that is a 14 day referral, so I am lucky to get one within a week.). DD has said she is open to speaking to someone about it but that she feels embarrassed and silly and like “her brain is attention seeking”.

I have agreed to a week off running (which I am aware is nowhere near enough, but it's a start) and that she needs to gain some weight, which she acknowledges. What else do I need to do? I feel ridiculous that I didn’t pick this up earlier.

Sorry you've had to join us. I'm still relatively new to this myself but it does sound as if you are in ED territory, and you're doing exactly the right things in bringing it into the open, stopping exercise and going to the GP

Early hints are to aim for 3 meals and 3 snacks a day, and supervise those in case of sneaky food hiding. Eating may be stressful for DD so maybe distract during meals (we do puzzles or listen to podcasts) and plan boosting activities after, like a game or watching something together, making sure she's not alone.

And look up Eva Musby, and her bungy jumping video on you tube.

And don't feel bad, or ridiculous, its natural to hope for the best whilst fearing the worst, we've all been there!

@Libre2 as that weight seems very low for her height you might want to consider taking her to A&E for some medical checks. Do you think she is eating fewer than 500 calories a day?

Hi there, no I don't think she is eating fewer than 500 calories a day. I was horrified when I weighed her as her eating has been healthy but not horrendously restricted. She has eaten well today since we spoke about it. I don't think I would get her to A&E as she is not having any other symptoms. I am sure DH would not support it either.

Buy the Eva Musby book it tells you exactly what you need to practically do as a parent. No exercise and we did magic plate initially to try to get the weight up to a safer level.

We were initially too hesitant and scared
to act in case we “made it worse”
but were told by CAHMs and a specialist psychiatrist to follow the Musby method immediately and we can work out the rest later.

@Libre2 welcome and don’t feel bad EDs are very insidious.

Your dd sounds really unwell, the Gp needs to do some bloods, an ecg, BP and pulse.

Can you check her phone? Ideally you need to get rid of any sm like tiktok and instagram which are completely toxic. Also check for any ‘health’ type apps that she could be using to count steps or calories.

All the usual healthy eating stuff needs to go, she needs chocolate, cake, butter, crisps and all the high calorie/high fat foods. Absolutely no exercise, it’s possible her heart is already struggling.

If she seems more tired, cold or breathless than usual go straight to a&e.

You need to take charge of all meals and snacks, plate up the food and give it to her, no negotiations.

Thanks all. It all seems very overwhelming at the moment.

I’m sorry you also find yourself here. Your dd needs to stop running @Libre2. It’s really unhealthy for her. As she is losing weight, she’s basically using her muscles to ‘feed’ her body. The heart is a muscle so she shouldn’t be raising her heart rate in this way. Depending on what shape her body is actually in, and you won’t know that without getting medical basic medical observations, blood work and an ECG, strenuous exercise can be potentially very dangerous.

As for DofE, whether or not your dd can participate in the expedition depends on how quickly she’s able to turn this around. And when the practice expedition is. You’re going to need to stop all sport immediately, including PE until she’s eating what she needs to have to put some weight on.

A sufferer of ED needs to want to do the activity more than they want to restrict their intake. It’s very distressing for everyone. This along with 3 meals and 3 snacks and high energy dense foods is the way out.

We had to say to Dd that she couldn’t do the things she wanted to do unless she ate properly. Yes it seemed harsh but it did work. Not wanting to not sit her GCSE’s and be put in the year below, miss board masters and not being able to see her friends ended up motivation enough to start eating.

She seems very determined although I realise it is ridiculously early days. She says it's better now it's out in the open and that her head was telling her what she should and shouldn't be eating and now someone else is telling her it's easier. We'll see. But yes, I have said no running until we have seen the GP which is a week away. She has agreed to that.

Just joining, dd (16) has struggled with disordered eating a while but came to the point when she collapsed at soccer and couldn’t play, we’ve been to the gp, and had all bloods etc and been waiting on cahms. Now have the first in patient assessment meeting in a fortnight- any help on what to expect and any advocacy that might been helpful gratefully received

Hi @Morereadingthanposting
Sorry you’re finding yourself here. You dd collapsed whilst doing sport and therefore needs to stop all sport immediately including PE. I would also be cautious of allowing her to walk anywhere, even to and from school. Idk if you’ve read through any threads.

She needs to be eating 3 meals and 3 snacks and eating every 2 to 3 hours to keep her blood sugars up. If she is eating less than 500 calories in a day or doesn’t eat for more than 24 hours, you need to take her to A&E to get checked over.

When you say disordered, do you mean she binges then restricts and maybe vomits after a binge or is she restricting and systematically losing weight? And how fast if so is the weight coming off? These are important things to tell medical professionals.

The treatment is the same for any ED. 3 meals, 3 snacks. Please clarify these questions as I’d like those answered before I say a lot more.

As for CAMHS, does your dd recognise there is an issue? Will she talk about what is going on for her?

I don't know if this varies across the country but we've had an assessment this week so I can tell you about what happened for us. Me, DH and DD met with a dietician, therapist and nurse who asked DD lots of questions about her diet, feelings around weight and food etc. the nurse took DD off to be weighed and check her blood pressure.

We stayed behind and they asked for a full history of what DD was like from pregnancy onwards and family histories etc.

They went away then and had a discussion and called us back in to discuss what they wanted to do next, they sent us for blood tests (we'd had GP ones too but these were extra ones) and referred us for an ECG. They said they'd speak to the school about more support and gave us a nutritional plan and some advice.

We go back next week for the final part of the assessment where they watch us eat lunch. Then they tell us what the plan is to help DD.

We were given advice from the nurse before our appointment too, have you been given any given your DD collapsed?

Thanks both. By disordered I mean largely restricting but some purging. This has been going on for about two+ years but she refused to admit there was an issue. She restricts pretty rigidly to 800 cal per day ( know this via her sister, she is very much less open with me) Weight loss per se wasn’t the issue more she refused to let herself go above 45 kg even as she was growing, Post the collapse she for the first time ever admitted there was a problem, She’s been driving the process going to the gp ( and at 16 and assessed competent I have not been allowed to be party to exactly what’s going on there) I have been shown her bloods and ecg which were thankfully fine, and that kicked off the cahms referral. In parallel while we were waiting for cahms she agreed to private therapy and I was able to get her on the private practice of one of the consultants at the maudsley centre which she has been attending ( last time I tried to get her help she literally sat there and refused to speak, At the moment she has been doing half sessions of soccer because that was the bargain whereby she consented to eat more- I think she shocked herself massively- she has gained back up to 48 kg post the collapse. Weirdly and possibly delusionally/ desperate for some hope it does feel actually a little more positive than in years, including less aggressive defensive behaviour and a willingness to at least entertain treatment

@Morereadingthanposting Ah I see you have had a long while of this. It’s great your dd is finally engaging in services. I am surprised she managed to go on for so long with such heavy restriction. And I guess you know now from the Maudsley consultant when she should and shouldn’t be exercising and the dangers to her health.

As to what to expect from CAMHS. It was almost 2 years ago with dd. So from memory, we talked with a nurse together with dd then left her to speak to the nurse alone. The nurse said normally the talk together with parents doesn’t last long, it’s more of a settling in period but as dd was very frightened, we stayed a lot longer and answered questions on her behalf. Dd didn’t understand why she was there and didn’t talk when dh and I were present, then expressed confusion when we left her alone. Whilst she did this, dh and I then talked alone to a psychologist and the nurse came back and told us when she’d finished with dd, who was then waited in the waiting room until we’d finished. The nurse would have taken dd for medical obvs, but she didn’t have these as she has a seizure condition, where her heart stops beating and the main trigger is medical settings. So we refused that part of the assessment.

I can’t really remember much about what was discussed. From memory, the psychologist was much more probing when we were alone than with the nurse. The psychologist asked us a lot of questions about her growing up and her history, how we were as parents with dd and the nurse was more about the now and issues around eating, so body temperature, weight loss, resultant issues from weight loss, practical stuff and triggers, how life is for her, what she’s doing and her feelings. With the psychologist, I do remember feeling as though we were being asked if we were abusive towards her.

CAMHS don’t like it when you get outside help as well as working with them. They argue it can disrupt the process, so I’d either hide that, or say you understand what they say about stopping and you’ll talk to your dd about this afterwards. Make sure you get another appointment from them, then don’t stop but pretend you have when you go back. It may be easier to do the latter, your dd seems to be advocating for herself and it may be obvious she’s had outside help. And if you try to hide this, she might inadvertently divulge it.

Are you talking to the Maudsley person yourself as well? From my experience with dd, who struggles to engage, this has been vital for us as dd isn’t really doing much of the work. However, I still think it’s important for you as a parent to be engaged in the process in this way, because CAMHS will get her to a good place physically. It really depends on the team, from everything I’ve heard as to how long they will keep her on past that point. And as you’re probably understanding now, there’s a lot more to it than restricting food. That’s normally a symptom rather than a trigger.

To completely recover, a person needs to be aware of many things, including triggers to restricting, and be aware if and when things do go wrong so that they can prevent relapse. You may need your private consultant for stuff like that.

Edit to add - it feels more positive because your dd is aware and actively engaging. This is wonderful news for you and a big step towards recovery.

Thanks so much for taking the time for such a detailed response. Indeed I’m on a bit of an emotional juggernaut at the moment of worry and hope. Dd has been very strategic over the years in keeping herself just “ well” enough to be able to avoid engaging in any kind of treatment, the gp referred her before a couple of years ago but because her bloods and obs were ok, the said they didn’t at the time have space for any non urgent referrals. However it’s been obvious to me that mentally it has still been all consuming. For our private sessions she does two by herself then we do one together. The consultant also uses these sessions to pass on information or initiate conversations with me that dd has given an ok for, which feels useful as dd won’t discuss with me directly. I hear what you mean on the sport but it’s literally her emotional lifeline right now, and wanting to play the only thing that’s currently letting me get her to the table….

Morereadingthanposting
Just a slightly different view. As your dd has some insight.

Dd was 16 when referred to cahms. She absolutely refused me having any thing to do with them but clearly recognised she had a problem (I was literally just the taxi driver to all appointments).
I know it is mentioned that weight gain comes before councilling/therapy, but for dd it was this that helped her to gain weight. And she was in charge of it. Including deciding what and when to eat
Look into cbt-e.

At one stage it was advised dd stops school but as to use your words "it is literally her emotional lifeline ".

So just want to say, that sometimes, slightly different approaches might work for some.

The reason I still dip into this thread is because I still worry a lot.
Dd is better but by no means completely recovered. Again, she knows and has spent over a year trying herself to get some help (gp, nhs...)

What team does she play for? My DD was a footballer. There is no way she will be giving the best of herself on the pitch at those weights. We used this a lot with DD. It wasnt about gaining weight, but more about gaining strength and stamina (it was all about weight but we reframed).
If its a PGA type club, they should have nutrition advice.
The calories needed to fund a match are extraordinary. As are the amounts of carbs required for preloading. We had advice on all this (after she was recovered as she was ill at 13 in lockdown) and it really opened my eyes.

Hi @Morereadingthanpostingi can see you’ve already how advice, as your dd has a weight in mind I would strongly suggest she is blind weighed. Have you got scales in the house? If so I’d either remove them or hide them. I’d also ask Camhs to blind weigh.

Your dd sounds really unwell and sometimes they have to lose everything to hit the bottom to be able to start working back up.

It sounds as if you don’t get to speak to the consultant alone. That wouldn’t work for my dd at all but she’s not in the same place as yours.

I think I’d drop the consultant an email and ask if there’s anything you should be aware of that can’t be discussed in front of dd. Because from what you’ve said your dd is in charge of everything, including what you can and can’t be told. And if this is the case, I’d be discussing the possibility of setting up an independent meeting or zoom about it. Probably a regular thing.

The ED coach we work with told us she would do completely separate meetings with us and dd. One session each a week, except dd doesn’t engage in that and it ended up being her once a month, dh and me a hour separately each week as he can’t keep up with me and we both have different roles to play.

Depending on how well your dd can advocate for herself in session, you could potentially be giving the ED a lot of control. She’s only 16 as well. And I’d want to know if that were the case. The consultant should be able to tell you this. You’re paying and you want the best and most appropriate treatment. I get that it may have to be treated sensitively to avoid your dd losing confidence in the consultant.

As for the exercise, you’re saying she’s put on 3kg, is that correct? And that she’s not collapsed since putting on the weight, right? Girlie is correct in what she’s saying about having to earn stuff, which is why I’m advocating for you to talk to the consultant alone. Because unless you have the skills to get your dd eating, then she’s really doing this alone and you don’t know what’s round the corner.

Much as your dd is probably learning some great skills, you should be equipping yourself in case of potential relapse so that you can turn it around. And learning what you can do to help. Perhaps you already have and know this.

Putting on weight on is a really big thing and I can see you are scared your dd may go significantly backwards and stop engaging - we all are. I’m not saying this to frighten you, I’m saying this to get yourself empowered, if you haven’t already done so, to deal with something like that if it arises.