Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

@Proseccoismyfriend sorry things are so incredibly difficult at your end. Has medication even been mentioned? DD was put on olanzapine (it is an antipsychotic drug but is used in low doses in AN as it reduces the anxiety arou do food intake). It works within a couple of days so pretty quickly. I believe it was key to getting DD to eat. We were inpatient and plates were flying, we came very close to the NG tube but the olanzapine was a turning point. She is still on it, and things are still difficult several months on but we are lightyears away from the deep bottom that was the inpatient ward. I think a few here have had olanzapine.

@BagpussSaggyOldClothCat yay for those glimmers. I remember it well. It is a real boost to your ability to carry on when they appear, however fleeting.
@LittlePickleHead wow that sounds v tough. My DD never purged but did throw food away, leave food and exercise secretly. It's so demoralising when you find the ED out on these behaviours. It's so untrustworthy. I too had to follow my DD round 24/7 to stop her star jumping etc. It was exhausting. I so feel for you.
@Proseccoismyfriend my DD also had olanzapine. It was a turning point for us too..it took the edge off the anxiety to eat, just enough so every mouthful wasn't a battle, just every other one.... but it did help. Not a magic bullet but I'd certainly be asking for it.

Signing in, thanks for new thread, I'll catch up properly later.

@mirabellablue hopefully the medication will give your ds a bit of respite. Sounds like something has to change to help him start to recover, and if he is eating enough then the exercise is the thing that will need to stop for a while. I guess there is a risk that his eating will become more disordered if he continues to drop weight. I'm doing the BEAT developing dolphins course and yesterday there was an amazing woman who has recovered from anorexia (started age 19) talking to us about her experience, and it made me realise how vital parents / family are in driving forward change when the person themselves can't really see the problem in their eating or other behaviours. Have you seen the Eva musby book? Here website is here and she has links for all of the chapters - might be helpful if you haven't seen it already. anorexiafamily.com/start-eating-disorder/

@Proseccoismyfriend - I'm wondering about the eating plan you've been given, and whether it's worth considering moving away from it towards something with a lot more concealed calories but manageable portions. I've been working on the principle of trying to keep portions manageable and not overwhelming, but with maximum calorie impact. So a lot of butter, double cream etc. the Quaker porridge flapjack things are 230ish calories for a small portion. Here is a link to the Eva musby chapter which gives a worked example to supporting them to eat - I found it super helpful anorexiafamily.com/coaching-parent-anorexia/

Dd has started back at school today, morning only. I'm so nervous about how it's going to go, plus the afternoon and whether she will be unsettled later on after holding it together all morning. Feels like leaving my baby at nursery for the first time all over again...

Sending positive vibes @greydoor

Oh greydoor I know that feeling all too well. Take care of yourself and I hope today goes well for your dd.

Hope today went okay @grey

Thanks for the thoughts. School seemed to go ok, she was much more like herself when she came home. And so I dared to hope. Stupid! I had made her biscof spread on oatcakes for breakfast and found all the biscof smeared under the breakfast bar. And then I went searching, the blanket she had on the sofa last night when she ate dinner was covered in all of the sauce she wiped off the pasta last night.

And to top it all off I weighed her and she has lost half a kilo. So there must have been much more of this sneaky behaviour going on.

I'm with your ds @Proseccoismyfriend - I want my old life back too...

@greydoor - glad school went ok.

I could also write a book about places I have discovered hidden food. She even hid an energy bar behind a toilet panel. I only found it when something needed fixing. No idea how she got in there. I think it's the determination to hide stuff and she knows I check bins etc.
DD will still try to hide. Ultimately, it means all meals are strictly supervised. We cannot let her eat without someone sitting and watching like a hawk.

@greydoor sorry to hear she has been hiding food, but I am glad school went well. You could maybe use that as an incentive? I feel we are making small progress, no where near as many battles with food, he seems a little happier and he told me even though he knows he needs to gain weight it does frighten him and can I help with that 💔 what a shitty shitty illness

If it helps, I was supervising lunches in the school car park all last year. I couldn't see how it was ever going to end. At the beginning of the summer, DD actually laughed at herself when I pointed out all the grated cheese down the side of the car door that "just spilt accidentally" and she said "let's not talk about that time." She's been eating lunch at school with her friends, unsupervised, since the start of term. There is light at the end of the tunnel - her camhs appointments show she must be actually eating it. The tunnel is long, and we're still only part way through, but honestly, they will stop hiding it one day. Keep going Mum's. Eyes on them at all times, and when you can't bear it any more, take a break and have you time. You need it and you deserve it. You are only human and can only do so much. X

Slowly catching up with thread, I'm so sorry for all of you in the eye of the storm. This illness is relentless and heartbreaking and I send you all solidarity and love.

I agree with lot's description of anorexia as a biological brain based disorder more similar to schizophrenia or dementia than other mental health illnesses. The trigger is weight loss and the only proven cause of anorexia is weight loss.

Frustratingly a lot of the health professionals working in the ED field still don't seem to get this.

The treatment therefore is weight gain and for a lot of sufferers they need to go right over where the would normally sit weight wise to stand a good chance of recovery.

Nan I totally understand your hesitation, when does dd turn 18? I think I'd be holding on as long as possible and wanting to see week on week weight gains before I agreed to discharge. I might be being cynical but I'd be really worried that dd is saying/doing the right things to get discharged to then start restricting again (I really hope I'm wrong but this illness has been known to play the long game...)

We had a look round a uni on Wednesday, dd was moody and stressed all day and ate very little which then stressed me out. I told her she was delusional if she thought she's anywhere near recovered enough to go to uni ☹️

She has definitely gone backwards with lunch, we're down to a piece of toast and either a chocolate bar or some crisps. She then eats loads at dinner time so overall is probably getting enough calories but it feels such a long way from 'normal' eating 😕 I am very tired of it all tbh.

@Lottsbiffandsmudge thank you for the new thread. And to everyone else, thank you for continuing to share, console and inspire.
At one point a dietitian warned me not to make things too easy for DD I.e. facilitate the AN. A few long months later, I can see more clearly what she meant about allowing DD to do the things she wanted to do (e.g. going to school, friends etc) whilst keeping AN. I think things may have to get really hard, painful, boring before they get fed up and choose recovery. If only we could do it for them

Girliefriendlikespuppies

My dd seems determined to go to uni. I'm torn between using it as inspiration to start eating properly and saying You're living in cloud cuckoo land my love.

We have 3 universities that are easily commutable from home but she wants to move away. Food issues aside I keep pointing out she'll have to possibly share a bathroom with up to 4 others and as she can easily spend 2 hours in the bathroom each morning that may be an issue...! She has her own bathroom here.

Dh is saying absolutely no way we will financially support her going to uni unless she's fully recovered and able to look after herself. The whole day can turn to shit if her favourite top is in the wash and she's lost countless days of education because her hair isn't right. It would be bonkers for us and her to commit to something that she just can't manage or get the most out of when it costs so much.

I send her links to apprenticeships.

How is everyone?

Could things improve in a year for your DD for the possibility of University?

Thank you for the links.

DH & I had a chat with DS tonight. He's agreed to try and eat more & we have devised a basic meal plan such as including snacks and more high carb food (as who knows when he will get to the top of the ED list? We need to start NOW)

He was on board with that so fingers crossed.

Also says he's happy to weigh himself each Sunday. We do trust him - he's never sneaky.

He absolutely would not discuss cutting down on his exercise though. Think we just have to take it one step at a time.

Bagpuss 'My dd seems determined to go to uni. I'm torn between using it as inspiration to start eating properly and saying You're living in cloud cuckoo land my love.'

This is exactly how I feel, I also feel like this every time she mentions going off to some far flung place to volunteer for a few months!!

I think your dhs approach saying he don't financially support her going unless she's 100% recovered is a good move tbh. I might say the same...

I think they need to be well into the maintenance phase of recovery before going to uni. Ideally, the uni should be nearby so that you can keep a close eye or at least plan to visit in the first three weeks and at intervals thereafter. Starting uni can be an emotional time even in the fullness of health. I would also insist on regular weight checks at the GPs and keeping up with therapy/appointments. They can also seek support from the University and it can actually be easier to get MH support there than in the community. Likewise, BEAT have a presence in unis. If everything goes well then it could just be the making of them but if it doesn’t live up to expectations or there are relationship difficulties then it could send them spiralling downwards again. I would also make it very clear that it is okay to interrupt your study if you are struggling. Universities will be very understanding of this. In my opinion, the key to success is for them to be able to be flexible in their eating and also to be able to say no and not feel like they have to go to everything, which I guess means being in tune with their own needs.

Hi,
I’m new here. My daughter has an ED (she doesn’t binge but purges after meals). She is being closely monitored at home and has a session with psychotherapist tomorrow. She doesn’t want to engage with GP but I have phoned them today for advice. Can I ask how you manage your own mental health? I’m strong and stable when she is here but literally crumble when I drop her off at school. I phoned in sick this morning and feel frustrated with myself that I’m not coping.

Hi WorriedmamaToT

So sorry you're going through this. Let your work know what is going on with dd so they can support you. It's a serious illness so you may need time off or flexible working if possible.

It's common for them to resist seeing the GP because the eating disorder is controlling them. However it's vital she gets checked out physically. If she's lost a lot of weight she might just look thin but seem well but her heart and other organs could be under strain. GP can do a camhs referral for you.

It's very mentally draining. Getting informed can help a bit but try not to drown yourself in too much information too soon. The Beat website is a good place to start and they offer courses. Eva Musby has an excellent book, you tube videos and a website. Depending on your area camhs may have some parent support services which in my case have been an online group and a short course.

Take care of yourself. Do at least one thing a day for you even if it's just a coffee in the garden or a quick walk. Pull in as many family and friends as you can for support. Sadly ED is getting more common but the upside to that is that people are more aware of it and there can't be many that haven't had some sort of contact with it. It thrives on being kept quiet so it does help to get it out in the open. Eva Musby's book has sections on caring for yourself and how to ask family and friends for help. Do you have a dp/other dc?

Thanks for the advice, it’s really helpful. Work know and are hugely supportive. They have put me in touch with a counselling service we have through work and I’m not feeling pressured by them to be there.I’m taking a few days off sick. I have a Dr’s appointment for my DD tomorrow morning so we can get more access to support. I am dreading telling her tonight.

I think I made the mistake of finding too much info too soon, especially as it takes seconds to find the pro ED forums. I’ll have a read of the book you have suggested so I read the right things, which will better inform me.

thanks for the support. So sorry that everyone on here is going through such a tough time xx

Hey everyone. Just checking in, hope everyone has had an ok weekend. @Proseccoismyfriend - how did it go today? Hope the calmer approach to eating resulted in a bit of weight gain and things are going better.

Welcome to @WorriedmamaToT, sorry you find yourself here, but this is an amazingly knowledgable and supportive bunch of folks, so you're in the right place. Eva musby is a good book, I agree there can be some frightening info out there so good to get information from a more containing and hopeful place. I found the beat website helpful and one of the other parents here recommended the 'developing dolphins' course which I've been doing and found super useful so far too.

@mirabellablue - glad to hear you had a good conversation with your ds. Hope the increased eating helps. Just a warning about sneaky behaviour - I would never have believed by dd would be so sneaky either, but it's completely depressing to see the new ideas she comes up with to avoid eating or to increase exercise. Once they have an Ed, they are controlled by something which isn't really them any more - I don't know if that makes sense. Hopefully for your ds he can turn things around, and I can completely understand how the exercise feels like a way of managing the ocd he has.

@Girliefriendlikespuppies and @BagpussSaggyOldClothCat - I was reflecting that going away to uni might also mean changing from a fbt approach, which although it feels hard going, also keeps us as parents in more of a driving seat, compared with being an (18 year old) 'adult' away from home. I can't really imagine contemplating that when you're not so confident about where they are in terms of recovery. I don't think I could let them go!!

We've had a bit of a miserable weekend. I've realised that I've got a few triggers to losing my temper, one of them is being trapped in a 'but whyyyyyyyyyy' type conversation with dd which goes nowhere. Quite helpful to notice that and work on a different strategy (leaving the room for 5 minutes). Realised that dd has got a whole range of strategies to discard food that I hadn't realised, so hoping that's what has led to the loss this week, and really hoping for a gain at the end of this week.

I'm a bit stuck about what to do about general unpleasantness. My other kids have been making lots of effort to cheer dd up, and have spontaneously got her little gifts. She has responded in a really not nice way, either refusing to engage with them, or being rude about what they have given her. I've bitten my tongue a bit - usually that kind of behaviour would be something I'd intervene with for any of the kids, but I haven't because I didn't want her to feel bad, but it means both of my other kids feel bad because of how she is behaving towards them. Would you just leave it? I've spoken to my kids and explained, but it feels quite strange not to speak to her about it...

Thanks for checking in ❤️ slight, tiny minuscule gain 🥳 she played it right down in front of him which I'm pleased about. He's so much calmer and not having such bad feelings when eating now. We have Ed assessment lined up for Thursday so hoping we get a proper meal plan in place and support. I've been blagging it the whole time with guidance from you all and links so thank you again. Cyps couldn't believe we'd just been left after discharge whilst waiting for community paeds
With regards to your daughter not being pleasant I think it's a fight to pick maybe in the future, she won't be reasoning properly and has probably lost all if not most empathy. Just reassure your other children it's not the real her

Hey! I posted on the older threads a while ago.
Our story: DD who is now almost 16 started self harming and making herself sick after food 2 years ago. Not long after she was diagnosed with Crohn's disease, not a good combination for an eating disorder. She was convinced she was fat, was eating next to nothing a day. Went to the GP referred to the eating disorder clinic, diagnosed with anorexia and she's been there ever since.
We've had to have breaks in treatment as camhs said she wasn't progressing which is true, we had gains but always followed by a loss.
Currently we're at 92% weight restored, we have a review this week which is basically where it's decided whether to continue with treatment or to discharge her as we're at a stale mate.
At the moment she's not eating breakfast, she eats lunch and has her evening meal. I know deep down she wants to get better but the hold anorexia has over her is so strong.
She's told me she wants to continue with treatment and to beat it so that's what we'll do.
I hate what it's done to her, it's changed her from a happy bubbly girl to an anxious wreck

Hi all. Looking for someone to chat to. DD, 14, ASD, has cut down on eating. I would say most days she has no breakfast, fruit or a bowl of cereal for lunch, and some vegetables and a few potatoes for tea. That’s on a good day. She’s lost 2kg in three weeks. Is that a lot? She says she can’t stop thinking about food and eating, and feeling guilty for eating. She can’t concentrate at school. She’s in 35th centile for weight. Is this concerning? I’m having to stay at school in the car park so she eats something (in the car) for lunch. Do I need to get her seen right away?

Hiya
@Catsback I would get in touch with your gp asap.
My dd (now 19) started like this in the first lockdown..... 6 weeks later she had to be admitted into hospital..... she started eating small amounts.... we thought she would be fine once college re-opens! Oh how wrong were we!
She dropped to less than 28kg... ended up with an NG.... 9 months in an ED unit, 60 miles away.......
She was discharged 2 weeks after having the NG removed - not eating solids. Literally told to leave and we were told they can't do anything - "lost cause". I lost over three stones with the stress.
A year on, she is fully weight restored but not eating regularly - constantly wanting to go to zero calories then eating everything insight. Went from a lovely, pleasant girl to a screeching, horrible person - I walk on eggshells around her as its me she always vents at. Never her dad!
Sorry for the overload of information - but feels so good to speak to people who are going through the same. I don't think DH, my son or I will get over the traumatic three years and counting.....