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

[Mummyoflittledragon]

New thread. The old one is full…

@Holly221288 I’m amazed they didn’t suggest admission when they couldn’t get a standing bp 🤯

Your dd sounds dangerously ill and imo should be in hospital.

It doesn’t sound like FBT is going to be straightforward due to your other child. There used to be another poster on this thread who was in a similiar situation and I know she really struggled…

Given the weight loss, refusal of food and concerns re observations I think your dd needs a full medical check urgently. It would be very dangerous to wait a week for bloods and ecg….

I think you should take her to a&e.

@Holly221288
As Girlie said, I was also very surprised they didn’t admit your dd from what you said.

Pearl is also right when she says about not being able to think beyond day by day. I’m such a planner that I whizzed ahead. And I’m sorry to hear it’s just you coping with all of this.

It is good your dd ate, but I also would really be considering taking her to A&E to get immediate bloods and ECG. Things normalise relatively quickly once they start eating again. But electrolytes can get very out of whack, which is dangerous and this imbalance and the lack of intake can interfere with the normal functioning of the heart, which is why she needs the ECG.

Idk if your dd is the same, when my dd says she doesn’t care or isn’t bothered, she generally means the exact opposite, so I shouldn’t read too much into that. It will very likely be anxiety or the ED talking.

You got her to eat, what, once today? Will she have anything else now, today? Not ideal, and not a long term strategy, but they do find it easier to eat in the evening. At first my dd had a rule of nothing before 8pm.

@Pearl97 thank you for the advice, I hope you are doing ok.

@CuppaTandBicky thank you for the understanding. Her bp and heart rate were ok when she was lying down. But they weren’t happy about not getting one standing up, that’s why they bought the bloods forward. Maybe I should have pushed for hospital.

@Girliefriendlikespuppies thank you for replying. They said to take her to A&E if she gets worse but otherwise wait for the bloods on Thursday. She had bloods last week (Monday) and they showed raised liver enzymes, reduced kidney function and something lowered in relation to bone marrow. It’s worrying to hear someone was in a similar position and how hard they found it.

@Mummyoflittledragon thank you replying again. I just kind of trusted CAMHS re the admission. They are having an MDT tomorrow so perhaps there advice may change. That’s interesting about your DD and 8pm. Unfortunately that meal will be all she will eat tonight and this has been the case for weeks now (if at all). I will obviously still continue to make and encourage her with the three meals and snacks

@Holly221288 if her liver and kidney are already struggling she should be in hospital 🤷‍♀️ you really need to push the team, she is not safe at home imo.

@CuppaTandBicky I was horrified at the idea of DD going in to inpatient care, but it really has been the only thing that has helped, I couldn't get through to her at all at home. It's not easy but it is worth it if it turns her around. A lot of the kids on the ward are around 13 or 14, the youngest was 11 and he did pretty well.

@Holly221288 so sorry to hear how unwell your daughter is, your situation does sound very difficult but like the others, I would say she needs to go to a&e. Those blood tests don't sound good and the standing BP thing is pretty worrying too. Have you got any support at all available from family or friends?

@StressedANmum
I forgot to respond to you. Yes, it’s great your dd wants to recover. It must be hard for you both, for everyone in in patient care. The silver lining being it seems most people progress so much better in that environment. And it is so nice to see everyone progressing. I do wonder if it is set up to be so harsh, theory being no one wants to go back. To be something to push against. I’m sure it works well for the majority of people.

Thanks for asking. I’m ok. I often wake in the night and mostly get back to sleep. My dog has a bit of an upset stomach. That’s why I’m awake again.

And the really really good news is that dd is basically finally openly admitting she has issues around eating. She’s been getting angry over the last week or so that I won’t just leave her alone to get over it, like other parents. Which means, she wants it gone. I’ve known for a little while that she’s fed up with it. And I did realise a few months ago this would likely happen once she left her school. The change of environment. This was the only place she felt safe, but she put herself under such social pressure there. Right now, she doesn’t know how to make it go. And has erroneously decided getting rid is leaving it to work itself out.

I tried talking it through a couple of days ago. She was incensed when I told her it isn’t possible to compare herself to a couple of friends, whose parents have left them to it 😔 (seems trauma based rather than mental illness). We’ve tried that (often). It’s just not the same as how it was with dd and how it would be again if I just left her to it. That she isn’t taking responsibility for her eating and I turned her round a couple of weeks ago, when she decided two weeks before that she wasn’t listening and could do this. That she went down to eating 4 times a day and quickly got into trouble. Flat denial. So much anger.

I told dd she needs to be comparing herself to those, who are hospitalised and sectioned and explained what that meant, but she can’t get her head round that bit understandably, because of her phobia of medical settings. Possibly she feels it doesn’t concern heer, I would never let that happen, she knows I know she wouldn’t cope. Ergo deep down, she knows I’m the glue.

I also told her about my journey with restricted eating as a teen from 15-16.5. Unlike my dd, I wasn’t mentally unwell and like her friends, I did eat. But I was so thin I had languna - that’s extra hair growth and my arms were incredibly hairy. I spoke to my mother about it just before I talked to dd and she told me she hadn’t been worried about me, because I ate. True, I did. Not much though.

Being able to talk about all of this btw is massive progress. It’s staggering. And I am actually wondering if dd really intends to go to university. She doesn’t live in the real world a lot of the time, it’s a coping strategy. There’s definitely a lot of denial going on, like Girlie said with her dd. One of dd’s friends has been laughing at dd in a nice way, saying to her recently, there is the real world and then there is dd’s world. There’s not a lot I can do about this all beyond equipping her to the best of my ability and waiting to see what happens.

@CuppaTandBicky
I do wish your dd the very best of luck with in patient care. Hopefully this will the thing, that helps her to turn a corner.

@Holly221288 I hope your dd has had a good night and that the MDT gets her the help she needs. As for the one meal, if your dd remains at home (I don’t think she will) and this is all your dd will eat, I’d be looking how to increase the calorie content. I did this with my dd at imperceptible levels. This was the first phase of progress and over a few weeks, the increase started to be significant.

I'm sorry to read how tough things are for you @Holly221288 I don't have any experience of your specific situation but I agree with the others that it seems likely your DD might need to be admitted. 'I don't care' is also my DD's favourite line when it's clear she's really struggling. I hope the result of the MDT meeting is more help for you both, one way or another.

I'm sorry things haven't worked out at home @CuppaTandBicky but hopefully you're a bit reassured by @StressedANmum I am, I've always been so scared of hospital/inpatient because it's only ever been spoken of by our team as something awful. It's helpful to hear that it can make such a difference to some young people.

@Mummyoflittledragon that all sounds hopeful, getting them to speak about/address their issues is so hard but when it happens it really feels like there's a potential for progress. I hope it feels like all your hard work, all your nudging her and not leaving her alone is finally bearing some fruit.

Morning everyone - today is finally our next ED appointment. I would expect we are sent to hospital. I did email the team on Monday and explain everything that’s been going on with going back to eating very little and not taking the olanzapine. I didn’t get a reply.

if anyone can give us tips on what general peads ward is like I’d be keen to hear. I’m a single mum and worried about my job as likely I can only get unpaid time off. I have pets as well so wouldn’t be able to be there 24-7.
@Holly221288 I’m sorry to hear your daughter is poorly you find it difficult with your other child. I do agree with others that it sounds like she needs to be hospitalised. Hopefully you will be able to get the help you need with both children.

I hope the appointment goes ok @10YellowTulips It really does sounds like you both need more support than you're currently getting.

We had an ok experience of paeds ward.
You wouldn't need to be there 24/7 (unless your child is like mine and won't let you leave!!!) The nurses and support staff will supervise meals and snacks if you aren't around. My daughter didn't actually mind being there and it's become a bit of a place of safety for us as it's where she seems to be most comfortable to eat.

You can also take your own food in if they don't like what's on the hospital menu. There were a few other ED patients in and some had a parent there, some didn't. Usually plenty of stuff to do like arts, crafts, movies etc (or realistically... Scrolling on their phone haha)

Good luck @10YellowTulips for today. I hope they find a suitable place for your dd and that you both get some relief and support.

@Weightlossworried Thanks. I’m quietly hopeful. But aware dd did almost get to this stage 11 months ago and retreated. Although I have to remember she has come a long way and is very different from a year ago.

It's the same for me we just cannot get through to her at all. She is absolutely adamant she's carrying this on and nothing anyone can say will change her mind.

She is 13 so it would have to be a paediatric unit.

She has experienced some of the regime already on paeds ward with the rest after meals, meal replacement if meals not eaten and NG tube feeding etc so at least that won't come as a shock but I feel on a general ward they perhaps aren't particularly strict with enforcing the rules (they don't really have the time or staff to make sure they're sat still for 30 mins after every meal etc)

@10YellowTulips hope you are getting the help you. Need.

Hi everyone. I’m sorry to hear about all the difficulties being faced by everyone here as we all battle this awful illness at different stages. We have been quite stuck for a while at the same weight despite eating regularly and largely sticking to the meal plan. We went away to a hotel in the uk and DD faced many challenges - such as uncertainty. Went to our first camhs appointment the day after we got back and no weight gain. I’m sure they think I’m an idiot or a soft touch. I feel so embarrassed now after our meetings. I feel they are getting impatient as by now ‘if we were sticking to the plan’ more weight would have been restored by now. But I saw her meeting challenge after challenge on holiday!

Being at home is easier as we can get into a routine with snacks and lunches etc. problem is now we are about to go camping for a week and I’m worried about more setbacks. We all desperately want to be trying to live a normal life and to show dd that we can carry on with some normal things. But it’s all so far from normal. We’ve got every single breakfast measured out in bags of weighed out oats , and her bloody special snack bars. She is sick of these! But at 73 % wfh we know she is so very underweight still and as camhs pointed out - very much in the ‘acute’ phase. I feel we just need some time to get going.

My DD (26) went to Paris with her breakfasts weighed out and a case full of protein snacks. Heartbreaking.

Thanks for the support everyone - DD did get admitted to general peads ward.
We went to our appointment and initially her consultant said she’d have to start the intensive outpatient meal support. This would have been completely pointless as DD already tried once and refused to comply.
luckily they spoke with the nurse from the intensive service who disagreed so they ended up telling us to go straight to a&e.

General plan will be to get feeding and weight gain established but we will know more tomorrow. She refused the evening meal they offered her which doesn’t surprise me. But she did take her olanzapine so that was something. I’m fairly certain we will be on NG tube before long but let’s see

@Raspberrysins inwondered how the holiday went. I remember praying for the day I never saw a ‘ bar’ again! There is only one bar I need in my life and that certainly isn’t one!

I totally get what you mean about the meetings and them thinking you’re an idiot etc. I have definitely been there. I started taking photos of the meals and asking if the proton size etc was wrong. Do you have a meal plan with protion sizes etc? I would ask to see the dirtician if you don’t see them regularly as they can advise where you could maybe make changes. Have they said what WFH percentage they are aiming for?

the school holidays are racing by. I’m glad you’ve managed to get away. I have everyone crossed for camping.

@10YellowTulips as I always say, one day at a time. Being admitted even if you ask for it is still a huge shock and makes everything seem more magnified. I really hope you feel supported in hospital. They will try meal replacement drinks etc before the feeding tube. If the tube is needed it is amazing how much stress it can take off you and how being refed can help so much.

Thanks for updating us and please do lean on us.

@CuppaTandBicky I’m thinking of you. This has been a really challenging few months, and you have faced it with such strength and courage. I really think with your daughters age, a clinic may help a lot. Like I’ve said a few times, normal hospital wards are by their very nature warm and comforting. My daughter definitely felt settled there, this can be a positive and a negative. Keep talking and know we are here and want to support you.

@Raspberrysins
Please don’t be so hard on yourself. Your dd didn’t lose weight in an alien environment. That’s really positive. If she’s eating loads and still not gaining, her body is repairing. And it could be that she’s in hyper metabolism. That’s where the body needs a very large number of calories, because it’s burning them super fast. Or it could be that she’s just one of those people, who need more than the average. My 18 yo dd needs at least 3000 to gain weight. Some can need 5000 to do the same.

@Desdemonadryeyes
It sounds as if your dd is continuing to comply and ensuring she is eating adequately. From what you’re saying, I guess it’s not a gram more than that. I totally understand your feelings as it is so hard to watch your child in a severely malnourished state struggling so much. I think it’s so much more difficult for adults, as ED services encourage autonomy, rather than family support. I understand why. So the fact that your dd is able to do this for herself is brilliant. And I hope she continues to look after herself.

@10YellowTulips
I think having your dd admitted will be a relief. I hope she is well looked after and will start to make progress. Thank goodness for that nurse. Boots on the ground often know best.

@CuppaTandBicky
I misunderstood your last comment. I thought your dd was definitely heading for inpatient from what you said. My dd was impossible to get through to as well. It is so hard. If you do have any time, I really would recommend Jenny Langley for support and how to talk to our loved ones. I have put her details on this thread. And I’m going to start a new one now. And post details at the top.

@Mummyoflittledragon finally results day! Really hope all goes well and both of your hard work is rewarded.

Thanks @Pearl97
I am crossing my fingers.

I was in the process of starting a new thread. And thought what about making a resource one. We can get it pinned. Hope everyone likes the idea and will add to it. I’m going to start a new thread. I need to do something. A little nervous here I believe….

https://www.mumsnet.com/talk/eating_disorders/5566004-eating-disorders-resource-thread-for-parents-carers-and-adults

New thread:
www.mumsnet.com/talk/eating_disorders/5566005-support-thread-16-for-parents-and-carers-of-young-people-with-an-eating-disorder

@Mummyoflittledragon love the idea of resources thread xx

Thanks @Pearl97

Dd didn’t get into either of her choices. School helped her to find something local. Commute or live there. Now shes looking at the same place as she had the offer, different university. Any old course. 😩

She says the university is too close and she can’t live with me anymore, can’t wait to get away.

@Mummyoflittledragon anyone not getting the grades will be saying shit like this to their parents. She is just angry and frustrated. It’s not meant for you, she is just taking it out on you.

Thanks for all your support @Mummyoflittledragon Your wisdom and compassion are truly appreciated.

Sorry to hear about A Level results. I’m sure she is just lashing out. You both have so much to cope with.