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

[Mummyoflittledragon]

New thread. The old one is full…

@ChristineBrooke do you have any scales in the house? If you do I suggest you hide them. If she protests then there’s another flag. We never used ours and my daughter asked for batteries to put in them. We should have picked up on that.

Actually what struck me most of all reading my posts (I then looked at some of thread 11), was I thought the vegetarianism kicked off the ED. But that was a symptom and means to restrict. Dd is still only eating chicken, but that was a major step for her.

It is great we have a safe space. I’m so grateful to those, who trod the path before me.

@Mummyoflittledragon I really mean it. You’re evrything your daughter needs and you always know the right things to stay on here. I hope you will continue to help us long after your daughter is recovered!

I know what you mean, when you look back so much is put down to teenage anxiety etc.
the baking thing is really interesting. I haven’t thought about it before, but my daughter took a great interest in baking and everyone enjoying her baking!

I wish none of us were on the thread, but I’m glad I’m part of a team with you ladies xx

We are grateful to you 😊

@Mummyoflittledragon you know, as I posted 'so I think she's seeing sense' I thought how naive I must sound to someone like you who has been so in the trenches. I've spent last night and today reading this thread and the other long one and I am very quickly realising how insidious it all is, and how easily I have been reassured by things it's clearly possible to fake/perform. And mostly I'm just so very sorry about what you and others have been, and are, going through.

And yes, very tricky all round wrt partners not getting it. In fact when I first raised her weight loss we spoke in general terms about the pressure girls are under, and he mentioned how pernicious was the general 'policing of young girls' bodies' in terms of even noticing or commenting on their weight at all. I am treading very carefully -- I have already intruded into her life as a step-parent and am extremely conscious of not wanting to become the enemy; I could very easily get this one wrong.

And thanks, sammyspoon, I will do that (though I also want to know how much she weighs).

@ChristineBrooke we don’t judge people’s lack of knowledge, we are grateful when people do listen to us though. There is so much said now about girls being allowed to be what they want to be etc. unfortunately that means a lot of people don’t want to ask questions etc.

I think taking anyone who has lost weight to the GP is the way forward. Get a starting weight and maybe there is a previous weight from previous visits. I note A and E etc now weigh a child at every visit.

@ChristineBrooke I totally understand your dilemma, but you sound to be doing a great job as a step mum and we are here to support you going forward.

Thank you. Means a lot! Will try the GP line.

@ChristineBrooke has your dd started her periods yet? My DDs period stopping was the thing that finally made me act, I’d known there was a problem for a while but hadn’t wanted to fully acknowledge until then. If your step DDs hair is falling out that is a major concern as it’s likely she’s being restricting for at least 3 months. She needs a full medical check.

I understand your anxieties around being a step parent but it sounds like your instincts are sadly right here. Maybe point your dh towards the BEAT website for more information. It would also be worth talking to her school to see if they’ve had any concerns.

@ChristineBrooke - I feel for you so much. It is so frightening recognising there is an issue. I suddenly twigged with my DD when a neighbour asked if it was the running that had caused DD to lose so much weight. She was already thin in the first place so there wasn’t anywhere to go really. We have been incredibly fortunate with how things have moved for us though. When I weighed her at home and asked her if she had been trying to lose weight, she was very tearful. She has been extremely compliant throughout (although I am sure we will get push back at some point) and said that it was a relief that she didn’t have to think the whole time about what she was eating as someone else was doing it now. I took her to the GP and she referred DD to CAMHS who saw us within the week. DD has since been weighed once a week and has put on 10 percent of her body weight - still a way to go but getting there. We start therapy with CAMHS next week.

I don’t ever feel like I can fully relax with it though as I know it is not linear and there will be bumps in the road.

I wish you all luck with persuading your DH and the GP.

Hi @ChristineBrooke sorry to see you have also joined this group. I am fairly new to this too, but we first saw the GP in January. Now we are 6 weeks into CAMHS and weekly weigh in appointments. My DD15 does accept she is ill, and wants to get better (apparently she is 'locked in') although it's been a real battle because she simply won't allow me to control her food. She makes her own breakfast and lunch while I observe her (which she hates) , but we always cook and eat dinner together. She as ND traits, and the 'magic plate' method just won't work. she is very rigid, and won't budge from this routine, but we are using a meal plan and she follows it loosely. She put on 0.8 kg for the first time last week, which she used to prove she can do it on her own without any help. So as long as it keeps going up, I guess it's ok..!

My advice is to arm yourself with knowledge, put your tough skin on and prepare for some battles.. we have had many involving throwing food and running away. Now things are relatively calm, as they are mostly on 'her terms', but we are muddling through. The baking obsession and addiction to buying cookbooks has happened with us, but I can't tell which parts are ED related as my DD has actually set up her own catering business on the side and is running a bake shed. So she is either totally consumed by the ED .. OR She actually loves cooking and finds it her happy place, so I am a but conflicted when I read about how it is just an ED obsession..

We have our family meal with CAMHS tomorrow - which will be at lunch time so it's all a bit weird and they've told us to bring a packed lunch - so DD will make her own sandwich and I'm not sure what the point is to be honest! I will also make sure she has crisps and a snack bar- those are the things she will try to avoid.

This is such a long journey if you're in it, and can be very overwhelming when you start thinking ahead too far.. so just try and think about the step in front of you right now- and then the step after that.. and so on.. when I start thinking about the amount we've got to go, I usually start crying again. Much love to you xx

Thanks so much to all of you. I really appreciate the solidarity. I had started to think I was being too interfering, so it's such a weight off to read that taking this extremely seriously (far more so than I was doing) is the right course of action. @Girliefriendlikespuppies yes, she started her periods very young, when she was 10. She has told me that they are currently 'irregular' but I will find out if they have stopped. Good idea about the website. I have spoken to him today but he was, as I thought he would be, pretty defensive. It's the worst response, as it makes me feel as though I am criticising her, which is the last thing I am doing.
@Libre2 thank you. I am very glad to hear about your progress. I do think that my girl, based on her tearfulness during any allusion to it so far, might be similar to yours -- I think she wants us to notice and show we care above all.
@Raspberrysins Gosh, I'm sorry. All such good advice, I will take it on board. I hope it goes well -- the catering business sounds impressive! Strength to you too xx

We are only in the early stages too.
When we had our ED assessment part of me was thinking they'd tell us she was fine (that seems absolutely ridiculous now!!)

I think what really made my DH see there was a problem was when we went out for the day and had lunch/dinner out. She would not eat anything and was really anxious, and also clearly exhausted. At home she would have got rid of the meal in secret or negotiated a low calorie option, but she didn't have those options when we were out

@ChristineBrooke sorry to hear your DH wasn't receptive
Hair loss is a physical symptom which needs attention, whatever the cause
So if DH is reluctant to seek help for a potential ED yet, he may understand the need to see the GP about the hair loss. At that appointment you need to mention all tbe other concerns, which point to an ED IMO, but it may be easier for him to accept another reason for seeking help for now
We all need time to come to terms with something like this, and I see the need to tread carefully, but also the need to act quickly

My DD is currently baking DHs birthday cake, so all the comments about baking obsession resonate too. She won't eat any of it. She's eating enough but is far from ED free. People say " its good she's comfortable around food" and I just have to nod and hmmm as its not as simple as that!

Thank you. That is a lovely message. And thank you as well @CuppaTandBicky. Xx

Unfortunately right now I’m not just getting dd eat. I’m also going through French A level listening comprehensions (they’re harder than I imagined) with her to increase her scores as it’s a weak area (just found out) and she just rebooked her driving test for next Wednesday. She was excited. I was horrified as I then have needed to find somewhere to take her car for a minor repair as she’s learned to drive in that rather than the instructor’s car. And breathe.

I am feeling a lot less alone with it all right now with everyone talking. I really need it right now. I’m getting the end of my rope. Been rather grumpy today. Dd otoh has been in a better mood, so she’s obviously a little more nourished today. This will pass, I know. I know.

I said to her earlier, one day she will realise just how much I have done for her. Idk if all the help I have provided will be enough to get her to the next stage - university. But it really does need to stop, otherwise she will never realise what she needs to do or be able to stand on her own 2 feet.

The issues are so much wider than the ED. And this is what most parents / carers realise when our loved ones start eating again and why the NHS only provides therapy once weight is restored or at least considerably improved. The ED is often a symptom, rather than the root cause.

@Mummyoflittledragon can you use driving as leverage? I pointed out to dd that EDs are a notifiable condition to the DVLA and if I thought she was restricting I would have no hesitation in telling them. It’s another thing that helped keep dd motivated.

I hope people don’t mind me picking up on something @ChristineBrookementioned about her stepdaughter being ‘naturally slim’. Our daughter had just started puberty when she developed her ED. She was born small and had always been very slim and on a low percentile on the charts, even when eating extremely well as a child. We struggled to agree with CAMHS target of 100% wfh for her recovery because to us it just didn’t seem like a natural weight target. Our caseworker somehow got us a referral to a guy called Lee Hudson at GOSH who is a specialist in the effects of eating disorders on children’s development. He said to us that children’s bodies can naturally change significantly during puberty. Her physique and percentile as a child was not relevant. There is an alternative universe in which she had not spent all that time with an ED and we had no idea what her body would be looking like. It was quite sobering. In the year after recovery I think she gained about 23% in weight and it’s settled now. So I think he was probably right.

@Mummyoflittledragon non weight restored adults are eligible for NHS therapy. If EDU won't see her CMHT will.

I'm sure for kids going through puberty its v different but our NHS dietician also told us that median BMI is not a target for naturally very slim adults

@Mummyoflittledragon appreciate that may or may not be good for you if it takes away an incentive so sorry to have been blunt
As I understand it CMHT have a duty to people regardless of weight status but EDU can discharge if weight isn't being gained/non engagement/not benefiting from treatment

Bit late to reply sorry, but that's very interesting about the cooking and baking link, my daughter absolutely loves it! Definitely become more of an interest over the past year, I guess that would all tie in.
I'm relieved to say we had a small weight gain today, thank goodness, 0.3kg in the past 48 hrs. She's now on 2000 calories a day, which the ward are understandably being very strict about, it's so hard to watch her struggle though. She's so far determined to not have the energy drinks so is managing to eat everything, which I personally think is amazing, considering some of the hospital food!!
@CuppaTandBicky you wrote your comment a while ago sorry, but just to say you sound like you're in the position we were in with our 1st admission at the end of april. They discharged us after a week once her refeeding bloods were normal, but looking back it was way too early. She was still on half portion for dinner at that point, so realistically there was no way I was going to successfully build up from that at home, if only a week in hospital was a miraculous cure!! Please make sure they sort out adequate follow up once you go, with a really clear meal plan, so you don't end up back in like us! X

Thanks for the information @Girliefriendlikespuppies and @unbuckle
Dd isn’t diagnosed. But I could still talk to her in those terms about DVLA. She’s not ready for any kind of therapy. She’d have to see she has a problem first. I suppose it makes sense that ED services discharge for non engagement. It seems so harsh when more often it isn’t because people won’t, it’s because they can’t, due to ND.

@sammyspoon that is interesting what you said about physique pre puberty. That makes sense of my observations of kids I know, including my dd. Apart from anything else, I always thought she’d be more on the taller side, but she isn’t. The ED struck at 15, so it’s unlikely to have affected her height.

Thanks for that.

I feel really low today and was actually going to ask if we could l leave.
I don't think she has refeeding because she seems fine and they're happy with bloods. We just aren't getting any sleep. We are both exhausted. The monitors haven't alarmed the last two nights but that's been replaced by other patients noise/accompanying parents (dads) snoring/admissions in the early hours.

We are both just exhausted and at our wits end here.

I know the meal plan isn't enough yet though and she already said she's not going have any more because it's already "too much".

I don't have the energy for this.

@ChristineBrooke I was where you are just over 2 years ago. I hope you can make her dad see sense. Maybe you should show him the thread? And no one thinks you’re silly for knowing what you don’t know. I thought my dd was on the road to recovery when she was not back then. We don’t know how it is for your dsd. I just wanted to let you know it more likely than not isn’t that straightforward.

The thing is your dsd has confided in you about her hair. So your dh/dp needs to be taking this seriously. And understand that you are very important in this process, because she trusts you. You are a safe space for her.

@CuppaTandBicky That sounds so tough. It must be a relief that the monitors aren’t going off anymore. I can fully understand you wanting to go home. But it doesn’t sound as if your dd is ready just yet. It is really hard to get them to eat when they’re at the stage your dd is at. She’s already saying the not enough amounts of food are too much.

The only reason I got my dd eating gradually more is because I was taught how to do it by the ED coach. Only the other night, dd was upset with me, because I made a visibly larger amount of broccoli for her (she eats it a very specific way so the food is just for her). I now know how to handle this and what her brain is receptive to in relation to her stage of recovery and she ate it. When she was very ill, I wouldn’t have dared to do this. She would just have rejected the whole meal. And it’s taken a gazillion micro steps to get this far.

I really hope your dd can stick with it. I understand how tired you both must be.

@ThatSparklyOliveBird That sounds really positive. I hope your dd can keep up the determination and get herself recovered enough for discharge.

@LurkyLurkyLou
I hope your dh has a good birthday. One day she will eat the cake. Mine still wouldn’t, but she has had bits and bobs of cake every now and again. For us, it’s always so stressful negotiating which restaurant and the time we go out. Dd is so rigid with it all.

@Libre2 good luck with the counselling next week. Your dd has made excellent progress. And it’s lovely to hear that.

@Raspberrysins I hope the meal goes well today. It is an important part of the therapy. They are looking at how the family interacts with one another. And I get it’s really false. They are looking for how your dd eats. And perhaps (idk that bit) how you all eat. Does she put the sandwich in her mouth and bite it off, or does she break little bits off and eat is slowly? Stuff like that.

I know someone, who works in adult services at the NHS. And part of his job is to offer this exact support to people over zoom/whichever platform they use. I had presumed it was 121. But thinking about it, it’s possibly a group activity.

Thanks @Mummyoflittledragon I know it's right that we stay until she's established on an adequate plan.

I just wish we had our own room or something. It wouldn't have made a difference when her sats alarm was going off but now that's better it would just mean we could sleep.

How do you do this with no sleep? It's like torture.

@CuppaTandBicky
I genuinely couldn’t do it tbh. I have chronic fatigue, which is why I know how you’re feeling and what it is like to be so exhausted you cease to function. You’re doing really well. It must be incredibly hard.

@CuppaTandBicky I totally get you. I remember saying to a nurse it was so hard and then asking why … I was like really? The noise absolutely drove me mad. So many nurses shouting at night, people talking as their children are obviously really poorly. Nurses discussing medical issues that weren’t healthy for my daughter to hear.

It is impossible, I get it. But your daughter is poorly too and weirdly when you’re home you will sort of miss the security of hospital. Weekends are always quieter and easier as less admissions for ops etc. I totally get the desire to leave. Instead I would start asking questions about what they need to be able to discharge. It helped me to see where we were going and how we would get there xx