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

[Mummyoflittledragon]

New thread. The old one is full…

Same @CuppaTandBicky

This is so hard isn't it? Do you get a break at all or are you with her all the time in hospital? It must e exhausting.

And yes, thinking of you @Mummyoflittledragon and hoping all is ok

@CuppaTandBicky the arguments and the feeling of please just get us out of here were the hardest parts! I had to take it one day not one hour at a time.

@Weightlossworried you seem to have done not so helpful people on your thread. Hope you’re ok. I know what you mean about making things worse but your not. Your identifying your daughters issue, which, like a lot of us thought, is easier not to. You have to though. Friday won’t feel as awful when they know what’s going on and find ways to help you. Xx

Hi sorry @Pearl97 and thanks. Just very busy with dd. I have been thinking of you all and reading. And I’m sorry it’s so tough for some of you. I just don’t have so much energy right now. A lot going on. ❤️ Tomorrow is another day @CuppaTandBicky xx

That’s good news for your dd @Weightlossworried I hope that has given her a boost. What did the consultant say @ThatSparklyOliveBird any good news? How is it going with your dd and thinking about mocks @Raspberrysins

Dd’s French went really well yesterday. She’s in the last business atm. I just have to digest an entire Molière play for next Wednesday and have the ability to spit stuff out. Maybe watch the film she’s studied as well idk. The play is my priority. Typically not one I know. And not short. Oh and give dd a crash course in grammar.

On the plus side, she’s eating better. It feels as though she is at the cusp of wanting to recover. Hopefully. I’m trying not to hold my breath as we were here last September before withdrawing back into herself and becoming massively anxious.

Evening all, sorry for those having a tough day today. We didn't get to see the consultant or the dietician (!) but overall things are a little better here currently, dd is allowed off the ward at last! Small wins, but cheered her up quite a lot. Her meal plan has increased again to a bigger breakfast this morning so think we're now on 2200 calories, she's eating sooo much yogurt! We've had really helpful staff on both yesterday and today which makes a huge difference, for my anxiety levels too, so hopefully a positive evening ahead.
As ever, thankyou so much for listening, it's really lovely to have a place to put it all down, with others who understand xx

@ThatSparklyOliveBird I'm so glad you've had a relatively positive day. I hope you and your DD are having a peaceful evening

@ThatSparklyOliveBird off the ward, I am so pleased. That really progress. You may find they spring a couple of hours home on you very soon! I am so gla dyou keep us upated xx

@Mummyoflittledragon I am so pleased the exams are going well, I wonder if your daughter is now thinking that she may pass the exams ang go to Uni so she is feeling more positive and aware that she will need to eat there. I put on so much weight at Uni, everyone is always eating! Keep going, you are doing so well to help her like this, I can't wait until the exams are over ...for you both! xx

Hi everyone, just checking in. Thanks for thinking of me @Mummyoflittledragon things here have settled a bit since the horrendous weekend. Today DD ate more than 2000 calories for the first time which is a big deal. She also went to school for the morning and is thinking of doing some of her mock exams which start next week. She’s finding it impossible now to make any decisions at all, since having to let go of some control of food she now can’t make any other decisions - so she’s told me to decide how much school she can do. I am officially in my last week of compassionate leave from work , and have my review meeting on Thursday. Thursday is also weigh in day- so everything hinges on this! Part of me thinks it’s too early to put her back into school, but part of me wants to encourage it. She’s not medically at risk as her HR is improved and she’s eating. I was potentially thinking of half days to start with so she comes home for lunch. She told me that lunch at school is too early (11:40!) and that she’s still full from her massive breakfast and snack at that time. She actually said she might not trust herself to eat all her lunch at school because of this.

We’ve had lots of long chats about her thoughts. I’m so lucky that she is able to verbalise everything. I bought the new maudesley method book and have found some really helpful techniques in that. Would recommend. It is a bit less severe than the EM book. I liked one idea to ‘name and shame’ some of their secret ED rules. Then start to one by one break each rule deliberately Turns out she’d had this rule not to ever go over 400 cals for lunch. I’d not realised but she’d been manipulating it somehow before! I also found some secret zero calorie dressings she’d bought.

anyway. I know that compared to some of you we are doing well with this amount of food, and relatively lucky to be at home and not stuck in hospital.. problem is that she hasn’t gained any weight since January so we have been well and truly stuck. She is still extremely malnourished at 79% WFH and extremely malnourished really. For some reason the food is taking a long time to make any impact.

since being at home for 4 weeks she’s barely sat down and can’t rest so I think school might actually help 😅. There have definitely been many moments in the last two weeks where I’ve wished she was in a hospital and it was out of my hands. But hearing from lots of you that isn’t always the case

Hey 2000 cals is great!! The ED consultant said that was what my daughter ultimately needs to be on.

Thanks for the tip about Maudsley.
I have been reading Eva Musby book but a lot of it does not seem to be working for us. My daughter (likely autistic) seems to seek out logic and factual information to support why she has to eat. Just being a firm but fair cheerleader simply isnt working what so ever although I do understand the premise.

Are you going to extend the compassionate leave until she is back at school full days?

I am still really uncertain about work. I need to be earning a full time wage to pay the bills and mortgage but I also will need to be home to facilitate the meal plan. I only have 2 more weeks sick leave and we aren't even home yet. Ed team have suggested compassionate/parental leave but as far as I am aware this is unpaid.

When we were dealing with this my GP immediately signed me off with stress. Work accepted it and they supported me. Meant I was paid.

@CuppaTandBicky im not sure yet if they will extend it. I feel so guilty as I’m a teacher and my colleagues have been covering a lot of my classes. There’s a chance we can juggle someone being able to pick her up at 1:15 between myself , DH and my mother-in-law. I’ll still be able to semi supervise meals. If it turns out dd isn’t gaining weight then we have to suspect she isn’t eating her snack at school and will reverse the decision to return. It’s all in a delicate balance! She is desperate for us to trust her but I’m not there yet.

2000 cals seems good I know but she’s got crazy high metabolism and weight gain seems impossible. To get her to 3000 is the aim and that’s a very large amount of food. Like 3 slices of toast for breakfast and two eggs! She’s managing some overnight oats recipe for breakfast at the moment with flax seed and yoghurt- which is ok for now but still avoids lots of fear foods.

we also suspect ND and have struggled a lot with rigid thinking and rules. The book is helpful at addressing some of this. Compassionate leave for me has been paid so far, the other option is get signed off with stress by the gp but that will be my last resort if needed.

Wow yeah 3000 is a lot to try and convince them to eat. That's at the point when they say "why am I eating way more than everyone else" and it's actually true!

Yeah school is a difficult one but that's good there are three of you to try and share it out. 11.40 is very early for lunch though. I know the lunches at our school are strange too because they stagger the year groups.

We aren't anywhere near the point of considering going to school but she's already saying she really wants to go back and get back to normal, she's missing it. Which is odd because she absolutely hates it. Probably just thinks it's a way to get away from us and stop eating!!

@CuppaTandBicky The answer to the question is that you’re in recovery from an eating disorder and your nutritional needs will be different from some of your friend.

@Raspberrysins That’s brilliant your dd is eating so much yoghurt. Mine is finally eating one tiny yoghurt a day and even that’s a massive win… dairy fats are so good for brain recovery, eg cream. She used to love Greek yoghurt.

@Raspberrysins school sounds like it might be a good idea. You know you will be sat during her mocks and it allows you back to school even part time. We’re only what 5 weeks away from the end of term, so if you were to both go back now even for a week, you are showing work you’re trying and if you then have to go off with stress so be it? Xx

My dd needed 3000 calories to gain weight, to reduce the amount I had to add a lot of cream and butter to everything, adding in a high calorie smoothie/milkshake and pudding also made a big difference.

I could get one bowl of porridge up to 800 calories (normal portion size but only made with double cream not milk).

Lunch would be thick slices of toast with butter and things like scrambled eggs with double cream added.

Snacks had to be at least 300 calories (homemade cake is the way to go.)

I also decanted pretty much everything, you hardly get any crisps in a packet now so I’d be two bags in a bowl and give them to dd. Likewise with yogurts.

If they like nuts these can be really calorie dense as is peanut butter.

Yy to them regressing and not feeling able to make any decisions, my dd was like a little girl again and would follow me around needing constant reassurance.

I remember going into a cafe and her waiting for me to chose what she could have, anyone watching much have though wtf 🤯

My dd also needs to eat 3000 calories to gain weight. As she won’t be directed on what to eat, that’s mainly from long life baked goods like crisps, pain au chocolat and biscuits. She won’t eat butter. She did for a few weeks, was eating great chunks of it, then stopped. I tried to get her to buy a sour cream and chive dip again just now. But no.

And in really good news, she passed her driving test this morning. She’s absolutely thrilled. My fil paid for a little run around and we’ve been going out loads, so she’s very competent and only got one minor!

I can slowly feel her need for the ED reducing. But she still wants to run before she can walk, always. Big ideas. And not wanting advice, just doing it. I know this is the ED. Her wanting to get away from me, because she doesn’t want to deal with recovery, wants me as her mum, not ED coach and thinks she’s in control etc. So the themes are always a combination of moving out…

The only good thing is I’m now a master in Socratic questioning, because I can’t tell her straight, that would send her spiralling… 😵‍💫

Gosh I'm getting nervous at the thought of 3000 cals!!

Haha I just had to Google socratic questioning. I think I need some training on this!

Congratulations to your daughter on her driving test. Only 1 minor!! That's amazing. I imagine there is a hint of fear at this potential new found freedom?

Congratulations- driving test and finishing a levels are big rites of passage for both you. Enjoy the moment!

amazing on the driving test! That’s awesome. I really hope it spurs her on to keep going with recovery. It must be hard to do when she is officially weight restored. It’s interesting reading about the different foods your DDs will eat. My DD is lost scared of cream and insists it gives her tummy ache so we have compromised on using lactose free whole milk for porridge which seems to work. But obviously not the same energy amounts. She also can’t eat nuts due to having braces. She can have smooth peanut butter of course. Anything ‘beige’ like croissants or crisps are major fear foods that we need to tackle. She will eat lentil crisps and bread though . She’s been having butter recently. Lots of yoghurt too. So it’s hard to get calories in the required numbers! I found I can sneak ground almonds into some meals without noticing! I am becoming a calorie expert now.

That's brilliant news on the driving test @Mummyoflittledragon - well done her!

What a week for you @Mummyoflittledragon. I’m so
happy to read such positive updates. I hope you realise that these are your successes too xx

@Weightlossworried I hope you have started to dread the sessions less. Do you go a few times a week? I hope that they are able to introduce you to other professionals who can help you. Whilst this will seem like the longest 9 weeks of your life, as you say it’s only been 9 weeks and you have come a long way. You realised your daughter needed help and you got it for her. She’s been diagnosed and you’re not alone in having to help her. A pat on the back to you xx

I was actually very pleased to have the session today. It's been a rough few days and I needed reassurance that I was doing the right thing. We go once a week in theory but they can't offer a regular day. We have seen the dietician the last few weeks which has been really helpful. The nurse is going to ask about us seeing the family therapist one to one as well.

Thanks everyone. I’m over the moon for her! I think I did have trepidation before, because I feared she’d go off and not eat. But she’s agreed now for real to having 3 meals and 3 snacks and she being really open about what she’s eating when she’s not home, which is also part of the agreement.

As for her A levels, she has one more on Wednesday, so still a hard slog. It’s going to be a little difficult to contain her until then and I spoke a lot before the test about having her freedom after the last exam. It’s at that point, where things could get a little more worrying I’m hoping therefore she will keep on eating. There’s such a difference between dd in terms of openness and attitude when she’s nourished or or not.

@Raspberrysins
She’s nowhere near weight restored. She’s within normal weight range. That’s different. Willowy people will naturally sit at a lower bmi than those, with a more substantial muscular skeletal atructure. Dd is broad shouldered and has a naturally curvy figure.

@Weightlossworried
I’m glad the session was useful.its a steep learning curve caring for a loved one. And you've come a long way.m, really standing up to the ED.

How are things with you dd in Oz @Girliefriendlikespuppies ?

@Mummyoflittledragon apologies I misremembered what you’d said before. Yes I know it’s different for everyone. They told us we’d likely need to get to 110% WFH before we’d see an improved mental capacity. It feels like such a long way to go! It sounds like your dd might be at a turning point. I’m relying on this happening - hoping that eventually they will just get so sick of the whole process they will give up fighting it!

Oh non need to apologise @Raspberrysins. I think dd probably needs to be 110% as well. She will be an adult by then though. It is also a hell if a long way to go for dd. Idk if it’s necessarily giving up fighting for dd, the motivation is different depending on the person. For dd, I think it’s moving on from school.

Much as her school was the only place she could go (it fills the brief of familiarity / feeling at home there and food she will eat within very easy reach). She will no longer have to live up to her reputation of being the most beautiful and most popular. Trying to be this perfect is very tiring when you’re ND. She’s spoken a few times about how stressful this is for her, and is one reason for her having wanted to drop out of school and run away from it all, especially when she relapses.