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

[Mummyoflittledragon]

New thread. The old one is full…

@Mummyoflittledragon thanks, glad your DD has managed ok on holiday

@StressedANmum oh my goodness. Your poor Dd - and you of course. I don't know enough to be able to advise but you hopefully someone with some experience can give you a more helpful reply

@Weightlossworried I hope today was ok. I will never forget the feeling before the meetings. I’ve never felt anything like it.

@StressedANmum oh my goodness. I really feel the system is so broken. I understand they need to treat her, but they also need to involve you and think about her future as well as now. She needs to feel supported and valued. We are here for you to tell us how you feel etc. We know how awful you must feel about all this.

@Mummyoflittledragon you have done so such for your DD and I hope the break has taught you to value yourself too. I remember at uni most people ate and drank a lot. We also made a lot of meals etc together - and had pizza etc when we returned from being out, I hope that is the normal and your daughter feels she should partake in all of that!

You really should give yourself a pat on the back.

How is everyone else, @CuppaTandBicky @ChristineBrooke @Girliefriendlikespuppies how are you?

@StressedANmum im so sorry it's come to this. I do find their approach hard to understand. I hope that, if they do proceed as they say, the nutrients will do your dd some good.

@StressedANmum I really feel for you. My daughter is now being NG fed under physical restraint for a few weeks. It’s brutal and heart breaking but ultimately it’s saved her life. The team have communicated well. There are certain procedures they need to follow and explain. I wish there was another way. As adequate nutrition goes in regardless we have also had some grounds and local leave and even a few hours at home. I am thinking of you.

Thanks everyone for the sympathy and support. We had an hour and a half with the consultant and the social worker this afternoon and while I'm not thrilled about it, I can see their point of view. She's been bumping along for eight weeks at around 72-74% WFH without really making much progress and according to them her physical indicators had started to get less stable so they felt they had to act. We only have a limited window as she's only a few months from 18, so they feel this is the only way to get her weight restored enough to actually fit in some therapy before she has to move on to (pretty non-existent) adult services.

When you can actually get hold of them to speak to, they're decent enough people, it's just so hard to get them. The whole unit is massively understaffed, they're bringing in all the office based staff regularly at the moment to cover for shortages. The consultant actually said they'd be delighted if we complained about staffing levels as they complain about it all the time but the management pay more attention to service user complaints.

Interestingly DD took it much better than I expected, given how distressed she's been the last few days. I wonder whether having all the uncertainty taken away finally has helped.

@Tops16 sorry to hear you're in the same situation, but you're absolutely right, it can be lifesaving. Best of luck with your DD.

@StressedANmum it's good you have an explanation that makes sense and your daughter isn't too distressed by it. It sounds like there's a good chance it could lead to some progress over the next few months.

I agree with @Weightlossworried I am pleased they were able to discuss it with you and I really hope it helps your daughter. We are all in your shoulder.

How did your meeting go @Weightlossworried? I’ve been thinking of you

Thanks for thinking of me. It went how it usually does, DD upset and refusing to speak. No weigh in but it doesn't seem to help with dd's distress at the appointment. I think the ed really really wants to know the number on the scale.

Had the usual lecture about pushing the meal plan. It would be lovely if they could actually offer some constructive advice but I think the truth is there isn't any to offer - when you push the meal plan and your child refuses to eat it all, there's not a lot they can tell you I suppose.

@Weightlossworried I’m sorry that sounds really difficult for you all. What % of the meal plan do you reckon she’s currently eating? Does she let you supervise / cook for her? Our meal plan has gone up and it’s been a real challenge. I had been feeling quite positive lately as we had a couple of gains recently (1kg last week). However our camhs person today told us she was the same as she was at her first appointment back in April which really depressed me 😓 because she lost on a few occasions and has only gained that back basically. What’s even worse is that she’s still 2kg lighter than when I FIRST took her to the gp back in January. Gah. 😩 this is going to be such a long journey.

@Raspberrysins that sounds frustrating but I don't think you should lose sight of the fact she's made good progress the last couple of weeks. Maybe your CAMHs appointments are like ours, relentlessly negative. They only ever focus on the stuff she's not doing/managing. I know they have to keep nudging us in the right direction but it feels depressing.

I think our DD eats about 75% of the plan. Enough to have not lost but also, crucially, not really gain. She's been up and down constantly and is only around 1.5kg more than when we entered the service in March.

We do all meal prep and support every meal and snack. She hasn't ever responded to a prompt. She's quite oppositional and I think she sees this as 'not giving in to camhs' now as much as anything. We are very stuck unfortunately.

That’s shit. No advice really as we are also stuck. Although my DD insists on preparing her breakfast and lunch so it’s hard to sneak anything else in. Are you able to do that? I’ve found ground almonds can be added without making a difference to taste. Although camhs did tell us not to be sneaky. On the other hand they say that when weight is restored the thoughts become less intense so I feel it’s justified! Are you able to go away this summer at all?

Unfortunately I tried being sneaky in the beginning and it backfired badly. She sniffed it out straight away and wouldn't eat much for a while. It took ages for her to get over the suspicion.

We had a holiday booked but CAMHs wanted a doctor to sign off on it and she lost over a kg that week and he wasn't happy with her blood test results so we had to cancel it.

We debated a UK holiday but honestly, we've had the odd night or two away and it's just stressful trying to keep her on plan.

How about you?

My MIL is taking us away to a hotel for a week which is going to be stressful.. my DD is looking foward to it, but I know it will be very hard for her. The meal times are a large part of it, as it's quite fancy and you get dressed up for dinner etc. We have let them know in advance, and I'm not sure what else we can do.. We are also going camping in the lakes at the end of August.. then Year 11 looms big and loud in September! I really thought we might be in a much better place by then, but here we are..

I always wonder how much success the ED team have with saying at the meal
plan. Do they think we didn’t advise them to eat before we asked for help?! I really couldn’t believe it when they said 3 meals 3 snacks like everyone them miraculously eats it!

@Weightlossworriedyou mentioned maybe not going for a few weeks, are you still considering this?

@Raspberrysins I’m glad it’s the holidays for you and you are able to get away. Sometimes holidays are easier than you think. The break will do you all good.

You never know @Raspberrysins she might surprise you with the meals at the hotel. Or at least you may be able to enjoy the bits in-between. And I know what you mean about thinking you'd be further on by now. DD starts 6th form college in September and I have no idea how that's going to go with her still so unwell.

@Pearl97 I'm honestly scared not to go. I'm not sure they'd accept us not going. My hope is that the therapist she's seeing will help her be able to cope better with the appointments. She's not eaten well since we got back...I have a suspicion she's going to try and force a situation where we have to weigh her by cutting back on what she eats.

Seeing some improvements here around social isolation. Maybe slowly a reason to be well will appear.
I appreciate as my dc has never had sustained recovery i'm not best placed to advise - but equally they've also not gone into freefall. We have and do go on holiday. I try to choose places with excellent transport links to highly developed cities and supermarkets in walking distance. Its been ok. It's been worthwhile I think. Certainly not detrimental. They're now able to swim too which is useful (you may not have seen this with yours but when mine was at their lowest bmi they weren't strong enough to lift their legs off in the water)

@StressedANmum @Tops16
i am so sorry that both your dd’s are now needing to be NG fed. That must be so distressing for them, for you as mums. Tops16 I know your dd has had mixed eating NG for some time and I’m so sorry to read of her deterioration.
I hope both your girls will turn a corner soon. My heart goes out to you both. I hope they are letting you hug them. And I hope you are getting some support to deal with this. ❤️

@Raspberrysins @Weightlossworried
I hear you on the weight side of things. My dd is about the same as she was when she became really ill. That was after 6 months of restriction and the fortnight, where she ate 1300 calories total over 2 weeks. And where I couldn’t take her to hospital, because a trip to hospital had caused her eating to fall off a cliff in the first place!

She lost another 6kg after that. But in over 2 years, my gargantuan efforts have amounted to 6 bloody kilos. And she put on about 5kg back on within the first year. It’s soul destroying to think that she’s actually at that low weight point still, because that’s the point, where things really dropped off a cliff.

As for how to get them to eat, it really is just presenting them with the food. Loads of love and connection. Drip feeding about eating 3 meals 3 snacks wherever they are, whoever they’re with regularly throughout the day to stabilise their blood sugars. In another conversation talking about energy out and needing to fuel their bodies to do all the things they need and want to do. So just needing to fuel more to do that. In another conversation (eg about wanting to exercise), talking about needing to have more, because exercise speeds up their metabolism, so it’s important to increase their intake to accommodate that.

I find it helps to write things down and commit it to memory. The ED coach helped me with that and does still for stuff, often not to do with eating now. It would be really helpful if CAMHS were to give some advice an d tips about how to talk to your dcs.

The last few days have been full of stress here. Not too much to do with eating as it is the first time she’s returned from going away and lost weight. It’s all the other stuff that life is throwing at us with an dd with complex needs. Wanting to go back and hotel hop by staying with friends dd vaguely knows was yesterday’s theme. Today it was something else. . And just every day is filled with stress here. Just a snapshot of one thing. Yesterday dd and her friends were cooking up to return on holiday and hotel hop. Ie stay with random vague friends - mainly boys. Clueless about the pitfalls. Or a road trip to the seaside and sleep in the car. Today it was something else.

Tomorrow will be something else. But I am going to thr the hairdresser, so tomorrow will be easier because he’s great and a very good sounding board.

@Pearl97
I do hope dd eats at university. If she goes away, any weight gain will be hard, I’m hopeful that she can feed herself most of the time with guidance. In a way I’m worried more about other stuff. She’s suddenly full of all these wild ideas. And she’s got money from her trust fund. Living away, she won’t have the support and guidance that she needs anymore. My stress levels were actually so much lower when she was on holiday. And now they’re through the roof again.

@unbuckle
Thets excellent news. I hope this glimmer will grow for your dc. Social connections are so important for recovery.

I agree @unbuckle that does sound promising. I also agree re holidays, I can see how they'd be beneficial. Unfortunately we had the option taken away from us in terms of going abroad.

@Mummyoflittledragon I'm sorry things are so stressful at the moment. Hopefully some time with the hairdresser has given you a brief reprieve.

I do know all the theory about connecting with DD but she is harder and harder to do this with. She has shut down again since the CAMHs appointment. She won't speak and any attempts to get her to open up are met with anger. I find it unbearable when she's like this. I couldn't sleep last night because I felt so anxious. She'll come out of it eventually but it feels like a bit of relationship is eroded every time she does this.

@Weightlossworried
Thanks. Yes very stressful.

I am so sorry your dd is disconnecting again. I know you feared it would happen, and it’s just so hard. Please trust yourself and the love with your dd. I understand that the love may feel eroded. It isn’t. Your dd is still in there. Just like my dd is too. You are an absolutely lovely and dedicated mum, who goes above and beyond. Most parents have no idea what we do.

Can you go back by yourself for a while. Give your dd the summer off or something?

As for the hairdresser, I just spoke almost solidly about everything that’s happened. We share a birthday, but he’s a fair few years younger. He has given dd tons of advice, because she insists I go with her when she has her hair highlighted. I take full advantage of that and chat to my agenda. He tried so hard to convince dd to go the more local university. It’s higher rated. And it’s actually the course she wants to do. But she declined the offer. I now realise it’s because her friend persuaded her to put the same first and second choices

And I’ve just reread my post. It is a bit garbled lol. I was half asleep. As for the eating, I meant it’s the first time she’s returned home and not been in relapse. So she’s managed her eating so much better this time. Really good progress, despite her weight.

@Mummyoflittledragon Thankyou for your kind words, such a horrible time again for my dd. I can see glimmers of her returning with the nutrition though. We visit as often as possible. She is 18 very soon so she needs to progress and fast.
It must be difficult to handle / know between what is normal 18 year old post exam flexing and what might put your DD backwards with her ED. She is lucky to have you.

@Tops16
Thank you. That’s a lovely thing to say. I think all us mums of ill dcs are exceptional. I’m so pleased you can see your dd starting yo come back. It’s so lovely when you see glimmers. It makes your heart dance just a little. Hopefully this can be a turning point for her and she can recover enough to not need the sparse adult ED services.

I agree can be difficult to differentiate between normal teen behaviour and ED behaviour. And there is the added complexity of dd having a lot of ND behaviours and her not understanding how the world works.

I am also having little glimmers now that my dd is starting to want to recover. I don’t think she’s aware just yet consciously. But things are starting to ease. Tiny steps forward.

Thanks @Mummyoflittledragon

Your hairdresser sounds amazing! It's so good when you have someone to talk to.

I keep debating this idea of not taking my DD to appointments for a while. When I asked what would happen if she refused to go they were clear that they would turn up at the house to see her or use the mental health act if they had serious concerns.

Does that mean I can't refuse to take her either? Does anyone know what my rights are? I actually have a close friend who's a doctor and a relative who's a nurse. They could theoretically do weekly obs for me. We could weigh her if we have concerns but otherwise ditch the scales. She may agree to that and/or blind weighing if it got her out of CAMHs appointments.

All she gets out of them is stress and anxiety. I'm going to discuss it with them but it would be good to know if I could just do it rather than ask