Support thread 15 for parents of young people with an eating disorder

[Mummyoflittledragon]

New thread. The old one is full…

@ThatSparklyOliveBird that's great that she's finally gained a bit. Fingers crossed for you for another gain and a trip off the ward.

! I hear you on the knowing all the calories. It's really hard especially when it feels like calories is a banned word - neither of us ever say it out loud but we know that's what we're arguing over.

Thanks @unbuckle. We've been under the care of CAMHs for about 9 weeks now and her weight has fluctuated most of that time.

It's reassuring to know that's not necessarily abnormal. We are stuck with this nurse unfortunately, I have asked for a different one on the basis my DD doesn't like him and won't speak to him. They don't have anyone else who can take her on. He is relentlessly negative. I don't know whether that's because he thinks we aren't taking this seriously (we are) or if he thinks he can scare DD straight but I find it hard. We need to feel a bit of hope but we all come out of every appointment feeling like failures. Even when she gains a bit he just talks about the fluctuations.

I also thought the same about body measurements...they've never taken any but it feels like that would be a good indicator? She is about 1.2kg up from where we started so not a lot of progress really.

Glad you've had a gain.

It was weigh day for us too but nobody actually told us the outcome.
Snacks for my DD are strictly banana, 2 biscuits or milk. She always chooses milk. I'm not sure if this will change as we progress through the meal plans?

Luckily there is no info about calories on the meal plan, and the daily meal options are selected on an iPad by one of the healthcare assistants.

I've noticed she still cannot bring herself to have certain things, like bread and cheese which are options on the meal plan. Things she used to love. The food she is managing to have she sees as purely medicinal. I'm grateful she is trying though and she has avoided being tube fed.

Another very interrupted night of the alarm going off to tell us the heart rate was low. I wish they could do this a different way. The lack of sleep is not helping. They did mention some sort of monitor that stays on and sends the readings straight to a computer so I'm hoping for that.

That's interesting about hair. My daughter's hair is so dry. It looks really unhealthy and a lot thinner. She used to be obsessed with having nice hair but doesn't seem bothered now. One of our rules here is to have hair tied back for all meals and snacks so she just never has it down now.

@CuppaTandBicky it sounds really good to me that she sees food as medicine. I guess she'll get back to enjoying food as she recovers.

I hope they can sort the alarm out, it does sound counter productive. Surely she needs sleep and rest almost as much as she needs food?

DD isn't bothered about her hair loss either. She just shrugs and says it was too thick. I've wondered if on some level she likes it as it 'validates' her having an eating disorder.

Yeah I would think so. The more tired and grumpy she is, the harder it is to get her to agree to eat.

She says the same about her hair was too thick anyway. Yeah you're probably right about it validating the weight loss and "proving" they aren't eating enough.

Thanks for the info on hair loss @Mummyoflittledragon it seems to fit with our timeline. My DDs hair is her crowning glory so it’s really freaked her out. I hope it motivates her a little.

I get you about calories @Weightlossworried it’s obviously the thing they need most but also the things we’re not supposed to talk about. My DD is finding it hard to let go of knowing calories. I know they are in her head constantly. I get frustrated that she still won’t eat a biscuit , but she is sticking to ‘safe’ snacks such as yoghurt and bananas.

Hello, new to this thread and to eating disorders in general. I was hoping if someone more experienced could tell me whether there are definite warning signs for an eating disorder in a teen, well, pre-teen girl? And what they might be? I am very worried about my 12 year old step-daughter, but don't want to overreact, or to be accusatory if it's just normal adolescent dieting. I also need to be very sensitive with how I might approach this, as her Dad does not think there's anything wrong with her eating, and that she is naturally slim. Yet she has visibly lost weight and is refusing some meals, and eating very little at others; last night she told me she is losing some hair. As she has quite an anxious personality in general I am getting worried. She lost her mother aged 9, if that is relevant.

Thank you for any advice.

Hi @ChristineBrooke

This all sounds very concerning. I am afraid your dp/dh is very much in denial about your dsd by the sound of it. My dh was as well for a very long time. My dd’s ED started by skipping lunch. Skipping lunch is apparently the number 1 factor in starting an ED. Dd was likewise anxious for at least 12 months before the onset of the ED. This is common.

As your dsd is refusing food and reducing her intake, and has visibly lost weight, you need to contact your GP and getting an urgent referral to CAMHS. When you speak to them, I would be wary of making too much about the anxiety. Unfortunately this may be put down to anxiety at losing her mum (poor love), rather than treated this as an eating disorder. Keep it factual. Tell them her intake and behaviours.

How much is your dsd eating atm? If she is eating fewer than 500 calories in a day or if she doesn’t eat for 24 hours or more, you need to be taking her to A&E for bloods, BP and pulse, potentially an ECG. Ditto if she seems unwell or if you’re concerned.

Is she feeling cold all the time btw? What are her energy levels like? An anorexic often feels amazing until they fall off a cliff and have zero energy.

We’ve just been discussing hair loss btw. This is because hair growth primarily requires protein - hair is primarily keratin. And the body prioritises feeding and repairing the vital organs. Hair is irrelevant to basic survival and the body is impressively good at keeping us alive. When a person is restricting, metabolism slows to ensure that every nutrient is used to maximum effect.

Your dsd has probably lost her appetite. This is common, the body stops sending hunger signals. It would be too painful otherwise. And as your dsd is emaciated, by the sound of it, she needs to be stopping all sport, including PE and strenuous activities, until she has been checked out. Reduce her step count as much as possible.

Thank you SO much, mummyoflittledragon. I have just been reading this thread, and it's dawning on me how serious it all is; your reply has confirmed this. Reading your response is a bit of a revelation that this isn't me being paranoid or overly critical/intrusive, to be honest, so selfishly a relief.

I will raise it and tread carefully but firmly. Thank you. One of the problems is our relationship is good, and she does confide in me (and in fact has told me about the hair loss and not my DH), but she obviously is closer to her Dad so I do not really want to go against him. But it sounds like I might need to.

I know very little about how much she's eating, except the fact that when dinner is served for her she leaves the whole plateful. When I let her serve herself she will eat a small portion. But frequently skips whole meals, and yes, often lunch. No idea what goes on at school (she is year 7 so lots of stress there too of course).

I had no idea about stopping sport, so thanks again. I will think about how to broach it. She is very athletic and very tall. In fact I think self-consciousness about her height has been a factor in wanting to be slim; she has made comments about being 'big' in general.

@ChristineBrooke @Mummyoflittledragon is absolutely right. It is very common for parents not to acknowledge there is a problem. Especially with girls and growing Dad’s are often in denial. I would take her to the GP asap. Then you have a weight. I wish I had taken my daughter sooner so I had more idea how much she had lost. From our experience this won’t just magically get better, she seems to want to lose weight and you do need to act. Good luck and we are here to help.

@Weightlossworried I absolutely know what you mean about the appointment dread. For me it never really left, I worried about them constantly. What I would say is think about how you would handle the nurse if you were working with them or if you were advising your best friend how to handle them.

One of my fiends asked why I was so obliging to their negativity. I stated to question things more with the nurse and ask more questions about what they would suggest. I think my daughter respected me more when I did that, not just sitting there looking scared. I’m not saying you’re not asking etc, I just wonder if you could change your behaviour a little and see what happens. Don’t get me wrong, even typing this makes me feel that sense of doom! I’m thinking of you xx

@Raspberrysins

@Raspberrysins I think the calorie knowledge is one of the hardest things to overturn. As others have said, I never want to see a rice cake again! How are things going? You must be having to start to think about going back to work? Thankfully it’s quite a short term isn’t it, is it looking likely you can go back? It must have been a really hard few weeks, but you seem to be making progress?

@Mummyoflittledragon thank you for keeping this thread going. I think so many are finding it helpful and it’s cathartic to me to help others.

@CuppaTandBicky like I have just said to @Weightlossworried I had to start to make a bit of a nuisance of myself in hospital. They often did tests and didn’t tell me the results and like you they weighed but didn’t tell me the weight. I started following them out of the room and asking questions or asking the nurses if it was in the notes.

Hospital is really hard, and not knowing how long you will be there etc is even harder. I remember the alarms and me feeling like I was getting poorly as my heart was hurting with the door opening and all the alarms. Are you in a private room! We spent a few weeks on a ward with 6 beds and it was a nightmare!
I don’t know ant to sound like I don’t think you’re doing these things, but I was such a shell in hospital I needed a virtual slap around the face!

Thank you. I will absolutely take it on board.

@ChristineBrooke, I don't know if it would be helpful to look at my thread on this board. It's something like 'worried about daughter, will Beat help'. You can view my growing realisation in real time. Like you I started out worried but uncertain. 2 months later with an anorexia diagnosis it seems blindingly obvious she was ill but it just didn't at the time. My daughter was also skipping meals and I so wish I'd questioned that sooner. Please get her to the GP if you can. There are lots of red flags in your post and the sooner she gets help the better.

@Pearl97 that's good advice. I'm gong to have a really good think about how to approach things. Me and DH both feel like rabbits in the headlights in those appointments. I've already decided that I'll ask them to stop threatening hospital. We know that's where she'll end up if she loses more weight. We don't need it constantly hanging over us along with descriptions of how awful it is there.

Thank you; I had in fact just started reading it! Yes, extremely concerning and lots of helpful things in there. Thank you and I hope things have improved for you and her (I am still reading).

@ChristineBrookewe failed to spot sign after sign until it became blindingly obvious very suddenly. My daughter complained of being freezing cold all the time, dizzy, her hair was falling out. I took her to the doctor who just looked at her iron levels. We were aware she was skipping breakfast then I realised she had taken a piece of mouldy bread as her lunch. Because she just threw it away anyway.
I also started a thread where you can read our dawning realisation that she had a full blown eating disorder.

@ChristineBrooke there’s definitely no such thing as normal adolescent dieting, children should not be loosing weight. It’s the weight loss that triggers anorexia, once the brain starts loosing fat it triggers a fear of food, irrational behaviours, anxiety and a desire to exercise.

Definitely start with a Drs appointment and take it from there.

@ChristineBrooke this was our thread…https://www.mumsnet.com/talk/eating_disorders/5028029-dd14-not-eating-what-now?utm_campaign=thread&utm_medium=app_share

@Pearl97 you are SO right. I have become a shell.

Today I went to find the doctor and asked him. I regret that now because she has lost weight since being admitted.

I get that the meal plan she is on at the moment is designed to get her medically well, NOT restore weight (for now!) but it was still disappointing. They didn't seem concerned.

@ChristineBrooke I didn't notice for a while but if she has visibly lost weight then it's highly likely she has an eating disorder and it's very dangerous for a growing child to lose weight. This is what we were educated about at our CAMHS appointment.

Also found you need to specify that you want to be referred to the ED service. Don't let the GP gatekeep this or think they can "watch and wait". Every week of under nourishment can be harmful to a growing child.

@ChristineBrooke sending more support your way.
I was where you are at the start of the year, fearful but hoping I was wrong. Skipping lunch, anxiety, sporty DD, all sound very familiar.
As the other threads say there are useful resources out there, so perhaps point DH towards those. There's guidance for the first GP appointment on the Beat site too. I'd also recommend keeping school informed, ours have been very supportive.
This week DD is doing her first full timetable week since January, there is light at the end of this horrid tunnel

Hi @ChristineBrooke just wanted to add if the GP doesn't take you seriously, as ours didn't, you can contact the pastoral lead at school. My daughter's teacher was absolutely amazing (still is!) and actually did the referral for CAMHS for us. We were then seen within a week, with an instant hospital admission, which she desperately needed x

@Weightlossworried i wanted to say about asking them to stop threatening hospital. That happened with my daughter and then, when she did end up going into hospital, I was left to comfort her and say it would be ok. So pointless.

@CuppaTandBicky im surprised she’s losing weight in hospital if she’s eating the meal plan. When that happened, mine was pouring drinks away and purging. I thought I’d mention it because the general ward staff weren’t always on the ball with what behaviour to look for.

God, thanks everyone. Such helpful responses. I am taking it all onboard. One things that’s weird is that she’s got really into baking — wants me to do it with her again this evening — but doesn’t really eat more than a morsel herself. I’m very sorry that for so many of you things got so bad so quickly. And yes, point taken about ‘normal adolescent dieting’. I just meant I remember wishing I was thinner as a teenager but never really dieted.

Honestly, the baking is a red flag too I'm afraid. My DD was absolutely obsessed with cooking and baking before she was diagnosed. Similarly, she barely ate any of it. I can't remember why but it is an eating disorder thing - an obsession with food I think despite not feeling like they can eat it.

Exactly @Shedqueen if the worst happens I don't want her to be distraught. I want her to see it as them providing extra help not punishment