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

[Mummyoflittledragon]

New thread. The old one is full…

Same here. Daughter never had any interest in cooking or baking and suddenly wanted to. But didn't eat any of the baked goods. Must have been torture!

She's definitely not doing that because I'm here with her 24/7. It's only a small meal plan though so I wonder if it will just take a while. She's just started on a slightly larger meal plan this week

I did that when I had AN as a teenager. It wasn’t torture though, it was satisfying to have the willpower to bake the cakes but not lick the bowl or eat anything.

That's interesting. And makes sense too..she did seem to really enjoy it. And really wanted people's feedback on how tasty it was.

Yes again. Same here. Just before she was diagnosed it was a friend’s birthday and she insisted on baking all the cakes. Ate nothing at the party. Absolutely textbook behaviour 😢

Ah… all making sense :-(

My dd doesn’t do the baking thing. I know a lot of people do. Interesting what you say, @FreeWillFever. That’s not surprising.

Just to let you know @ChristineBrooke , sufferers set up a whole bunch of rules for themselves. For example my dd was no food before 8pm. Others it can be exercise related. As your dsd is athletic, check she isn’t doing exercise in secret. It’s a compulsion.

And ED sufferers should stay away from one another, because they compete and egg one another on to eat less or nothing and to eat lower calorie / fat / sugar free etc. A sort of purity spiral.

One thing that’s common is they often want to go to the supermarket to shop, but won’t pick up any food for themselves. The ED coach is fine with my dd doing this. It’s exposing them to food, even if they won’t take anything today, perhaps one day they will.

@CuppaTandBicky
I imagine they’re being conservative to avoid refeeding syndrome. Refeeding syndrome can make people very ill and if not treated fatal, which is why your dd is being very closely monitored. There is a protocol to follow, which steps up refeeding in stages until on the full amount. Hopefully you will see a gain soon.

@Weightlossworried
I have been thinking about your CAMHS guy. My first thoughts are PALS, get fierce and protective. Because that’s how I’d react if I didn’t think it through. But it’s a bit nuclear and people don’t normally intentionally upset others, especially young ED sufferers, who are so fragile.

Do you think he just doesn’t think before he speaks? I’m wondering if it’s unintentional blurt and he’s lacking awareness. As he’s in ED services, perhaps rather than trying to be brash, he actually genuinely cares and wants to help, but it is coming out all wrong. Maybe I’m barking up the wrong tree here. You could perhaps try taking him to one side, being really kind and gentle to him and explain how he’s coming across and that you understand it’s from a point of concern and care, however, your dd is feeling pressured / overwhelmed or however you want to describe it. And ask him to maybe say x, y and z instead.

@Pearl97
Yes, it is cathartic, thanks. I’m in a whirlwind atm and this is also helping to calm me. It’s taking so much energy not to go nuclear with dd constantly goading me.

I know it’s because she’s not doing so well. And the more anxious she is and the more she restricts, the nastier she gets to me, because I’m such a threat to the ED.

This morning she was vile (well the ED was vile), because she’s buying Pepsi max down the gym - she’s going there to revise, not always to workout. This evening it was because I cooked too much broccoli - her diet is very beige, she needs more nutrients. Accusations of me doing it deliberately, which then turned into nastiness. I just kind of shrug and side step, but she was horrible to me. And she frequently projects how she feels about herself onto me. So I’m then analysing the meaning behind it to see if I can help nudge her on. It’s so complicated. And soul destroying.

I’m exhausted. And yet every day I turn up for her, when she doesn’t bother to turn up for herself. Because that’s what it boils down to. She doesn’t want to step off the hamster wheel, so that she can learn something about herself. And actively participate in the process of recovery. So every day, I nudge her, and often I drag her forward kicking and screaming all the way.

@Mummyoflittledragoni just realised I recognised your username from way back. You popped up right at the end of my plea for help.

@ChristineBrookeour CAMHS team said that we had a couple of things massively in our favour for recovery. We spotted it really early. We sought help immediately. Our daughter accepted that she was unwell and she wanted to get get better. As parents we both acknowledged that she had anorexia. Apparently so many kids become incredibly ill because those things don’t happen. Very often the parents are in denial and will not admit there is a problem. Honestly I struggled to believe it. It was my husband that looked me in the eye and told me we needed to act. He had lived through it with his sister as a child and he spotted the signs.

Yes, I know. I recognised you and the thread you posted. And my dd is still very unwell unfortunately. She got to end stage last September, then completely retreated. In total denial.

I am so sorry I can’t imagine how tough this must be for you. I have been following your posts and thinking of you.

Another here who had a deeply unhelpful first experience with the gp. I knew dc had an ED, but the gp did not take bmi as they were not quite an adult and bmi is only done on over 18s. If they had, it would have been 16 and a referral to ED services should have been made. Instead it took another 7 months and another 4 kilos, during which we were told repeatedly it was not an ED. I don't believe any of the gp's we saw knew about the wfh you guys with under 18s are told about.

The internet can be terrifying but there is a real lack of knowledge among gps. We must have seen 5 of them. None asked about mental health more generally, self harm or suicidal thoughts. All treated it as if something other than a mental health condition could have caused this. I only got a shift once I took up emailing the practice manager. DC has been given 5 different diagnoses, but what they need is individual consistent targeted help to feel worthy of change

I'm so sorry @Mummyoflittledragon that sounds so tough. You must feel like her emotional punch bag, even if she doesn't mean you to be. Your strength is inspiring.

As for the nurse, I absolutely believe he is trying to help. He just has an unfortunate manner - he sort of lectures her. He has done things like got the dietician in and offered to get a female hca to speak to dd. He came to our house to do meal support. I can't fault the level of support he is offering. And honestly, I'm not sure how much DD would engage with anyone from CAHMs - in the same way your DD is hard on you because you threaten the eating disorder.

That's appalling that it took so long for you to get help @unbuckle. I completely agree the knowledge among GPs isn't great.

Thank you @sammyspoon. I reread your thread and saw I posted on 24/3/24. That was the day dd ate 200 calories. I know this as we went to a restaurant that day for my birthday. She ate nothing the day after and 1200 calories total for an entire fortnight. I know now this is MEEDS red and she should have been admitted to hospital, but 111 weren’t particularly concerned about her when I rang to discuss it with them.

Thanks @Weightlossworried She’s a lot nicer than she was 2 years ago. The thing I find most difficult now is the change of attitude when she’s relapsing, or at the start of relapse. It’s much easier to accept being treated badly consistently. You just get used to it, whereas when you’ve had a few good months of love from her, then she relapses and it all goes downhill again, it’s hard to take again.

Thats terrible @unbuckle. Our GP was great, lovely man. CAMHS otoh were awful. It is difficult enough to reach out for help and frightening when it’s not there. CAMHS refused to see dd without basic obs. And I couldn’t get obs from her due to her medical condition. The GP intervened in the end.

I found the gp (and later EDU) had a massive blind spot because DC would insist they weren't intentionally losing weight and didn't want to be thin. I begged them to look at deeds not words but all that meant is they thought I was unstable and unreliable
2 years since I first assumed it, someone has finally diagnosed AN. Apparently the average wait for treatment for adults is 3 years

Morning.

Hope everyone has a good day today. This is a long, miserable journey but I hope everyone is as well as can be expected. You're all doing an amazing job.

We are here for at least another couple of weeks although things seem to be going OK.

I do wonder what it will be like when we go home. Is it just the drive to leave hospital that is helping at the moment? She has already said when she leaves that she will not be eating as much as she is now because "it's way more than anyone else eats".

I think the current meal plan is 1600 cals per day.

That said, we have avoided an NG tube and the bloods are looking good so I'm taking that as a win for now. I really don't fancy another stay here. It doesn't help that every time I leave she is messaging me asking when I'll be back. Ive only ever left for a couple of hours to get a proper shower and have some dinner..

I really hope for a restful day for us all and some small wins.

Dd was referred to the ED team by Camhs as she was already under them for an autism assessment which worked in her favour I suppose.

@Mummyoflittledragon I’m sorry your dd is being hostile to you again, it's really hard when you’re trying to help them.

My dd has made it to Australia, my anxiety has been through the roof but she seems okay at the moment.

@CuppaTandBicky you need a really robust plan from the ED team before discharge home otherwise you’ll just yo-yo back in again. Have you read the Eva Musby book to get some ideas for managing the FBT once home? 1600 calories is still very low, she’s likely to need double that to get her brain functioning normally again.

Yes, yes, obsessed with helping me shop... God, it's all there. I don't think she's exercising in secret, but I will keep an eye on it. I had a good chat with her last night about the hair loss, and mentioned that one reason might be that she's lost weight, and it would be good to eat more in general, and to up her protein. She cried but then she ate a whole salmon fishcake, so I am praying she might be seeing sense... I can't thank you all enough. I wouldn't have spoken to her otherwise.

Yeah I'm just reading it at the moment it is helpful.

This meal plan makes me think she probably hasn't eaten a normal amount of food for a while! The meals on the plan now are actually similar in size to what she would have eaten before all this... Although I suppose before they were interspersed with chocolate, sweets, snacks etc back in the day.

Morning everyone,

I am glad this is a safe space and people are posting regularly. I wish no one was on here, but I’m really glad the thread exists.

@CuppaTandBicky The ups and downs of hospital are so hard to deal with. I would say try not to think about going home, other than how good it will feel to be home. I worried so much about it, I sort of worried I wanted to be in hospital as crazy as that sounds. When you are home you will be supported. Your daughter is really poorly at the moment so may say things that won’t materialise when she’s home.

I found it really hard knowing we would be there weeks and weeks, but I slowly fot used to being there and every day had to tell myself it meant she was getting help and was starting to accept she had to. I know exactly what you mean about being a shell though. Are the ED team visiting? The nurses gave me a copy of the eating plan. It went up each week after refeeding bloods had been done for two weeks. It helped me to know what was going to happen. I also asked to see the ED team regularly. Do they take your daughter for meals and chat to her?

The home team are helpful after hospital as they realise the severity of the hospital stay. Cost wise etc they don’t like children with ED on paediatric wards. It’s expensive and doctors don’t really understand it. The ED team will be the ones that allow her home.

it’s so hard as I felt like Boris, I should ask questions, I shouldn’t make a fuss. I should ask how long we will be here, I mustn’t ask how long I will be here!!!

I think if you read the threads most people are finding that the hospital stays were the catalyst to recovery. As hard as they are you aren’t at home worrying about her heart etc.

Please ask any questions, if I can help I will xx

@Weightlossworried your rabbit in the headlights really resonated with me. I agree with @Mummyoflittledragon, but I also know our nurse was really wishy washy. It might be worth asking to see the ED GP. They are far more practical and my daughter believed he knew what he was doing!

I definitely realised the only way was for me to change my stance with them. I was so sad and worried at first, but then I learnt if I asked more questions or asked them to elobaroate it made them change their way of talking to me. It’s like revising for exams, we all learn differently. I found I couldn’t be spoken to the way they were speaking to me, and knowing we could be going for months or years have me the slap round the face I needed.

I used to really really dread the meetings. In fact it made me quite poorly. I’m thinking of you and will be on Friday xx

@Mummyoflittledragon you really are amazing. I hope looking back makes you realised you have come a long way. It’s strange seeing dates and posts and knowing how you felt back then. I have everything crossed your DD will improve again xx

Thanks for you reply it's helpful to hear from others who have done this.

The ED team visit twice a week but I'm doing all meals and snacks. We have a copy of the meal plan at the moment and I've found them all online so I know what the next one will be which is helpful but I'm not sure how often they increase? I guess that depends on a few different things.

Did you stay all day and night? I keep bringing up the possibility of leaving at night after the evening snack but she gets stressed out. I don't know if I'm doing the right thing by staying because if this is going to go on for a while I need to see my other child. I feel like it's the right thing for now because I don't want anything to interfere with her recovery.

That's wonderful, well done -- and great that your OH was so on it. I think my DSD's Dad will struggle with accepting there's a problem. But I can see I need to convince him now.

@CuppaTandBicky at first I stayed as I was so worried she would shout or something when I left and that would go against us. I felt like everything we did was being scrutinised. We were in over winter so couldn’t really get out, but my husband and other daughter would come to the hospital and I would go and have lunch with them. Then I started going home to shower each day, just for an hour. Sometimes I just sat in the car but she got more used to be going.

I kept increasing the time I went away. During the day I would ask someone to sit with her while I took a phone call etc. just to try and get her used to not being with me. When she finally went back to school I was worried she wouldn’t be able to leave me if we’d not been apart for so long!

The dietician will increase the plan as much as possible as quickly as possible. The ED team will be looking at the weight gain. I found the doctors only cared about physical obs not weight. I started asking the ED team what weight gain they were looking for before discharge xx

@Girliefriendlikespuppies

Thanks. I am really pleased to hear your dd is arrived safely in Australia. I hope she has a wonderful time. I get why you’re anxious about it, but you’ve both put in so much work. And it will likely be a resounding success. Xx

@Pearl97
That has got me in floods now. I’m just going to write that out, because it’s hard and when I feel like shit (pretty much all the time right now), I am going to remember you told me : ‘I am really amazing’. Thank you you’re always such an inspiration. ❤️ Yes, I’ve learned a lot since then. It’s the knowledge, that no parent wants to know really!

@ChristineBrooke
Be wary of thinking she’s seeing sense. EDs are sneaky buggers and can lure you into a false sense of security. I get how hard it is to get your oh to see if they don’t want to. Dh still doesn’t believe this is as serious as it is.

As for dd, she’s been pretty horrid to me since January, due to relapse between January and March and then me constantly pulling her back, so that she doesn’t relapse again. And she was massively controlling me before that. The control has pretty much gone, because I finally stood up to her. This has been a double edged sword, as despite being very much not an adult in behaviours and ability to look after herself right now, this was the point she declared herself an adult. All in all I think it needed to happen, even if it’s been really painful.

And I feel a bit better about dd’s holiday next month with the 2 friends. I know dd really likes them, but it’s their level of maturity I am concerned about, especially as one is in the year below and has ED / is vulnerable. Dd has now told me a few other people she knows are also going. This includes a girl, who used to go to her school. She sounds very sensible and would take care of dd I think. And the boy I talked about is arriving 2 days after her, although atm that is all off again. They were both at her school and both from the year above. He’s been on a few holidays alone and is a lot more grown up than dd. He also could definitely look after her if needed. And at this age, a year makes quite a difference, especially when compared to dd, whose brain hasn’t been properly nourished for the best part of 3 years!

She’s also eating ‘proper’ morning snack again, despite refusing point blank to go on meal plan… because this is meal plan, or at least first stage as it’s very ARFID/beige. Getting her to eat this pain au chocolat at 11am is a massive win. And actually she did it in London on Sunday. I didn’t think she would, but maybe she believed dh wouldn’t take her to the football rally if she didn’t? Because that’s what I told her…

It still means her breakfast and snack are a combination of longlife chocolate pancake, a croissant and a couple of pain au chocolat, plus a small yoghurt, but it’s a start and the 3 first meals are edging closer to 50% of her daily intake, which is what I have been trying to achieve. She won’t agree to tell me what she’s eaten atm. It’s not needed apparently. She really thinks she has this under control… which is actually the problem right there.