Teen Eating Disorders Thread 7

[Lottsbiffandsmudge]

We have managed to fill the previous Thread here https://www.mumsnet.com/talk/eating_disorders/4471980-Teen-Eating-Disorders-Thread-6?page=40

So I thought I would start a new one.

Everyone supporting a young person with and ED is welcome here for advice (non professional but lived experience) and support.

Hoping everyone can find us...

SwattyPie It's heartbreaking. My dd comes out with similar things. As pp advised me up thread, it's best to try and deflect these conversations and have some stock phrases that you can say to stop it spiraling into deeper negativity - to protect your mental health as much as hers. Eva Musby's book is great for tips on how to cope when the ED is talking.
What helps when she says 'Leave me alone' is to say 'I'm your mum. I love and care for you. That's my job. You are ill and I know what you need to get better'. With my dd it can be easier to text these things sometimes as I don't think it always goes in when we're taking face to face.

You might find this helpful SwattyPie

anorexiafamily.com/emotional-support-parents-anorexia/?v=79cba1185463

Hi @SwattyPie am really sorry you're having a tough time at the moment. As you know leaving her alone isn't really leaving her alone, its leaving her with the ED who will relish that. It is a battle minute by minute.

Its really hard at this point because you may not be able to offer a convincing different future - "A recovered you will have all the options in the world" - she/ED will counter "not if I'm fat". You could go with (and we did) "We know its so hard but keep going, ultimately the ED is not your friend and the ED wants you dead" Her answer "I want that"

My advice would be at this point not to engage much in future creation right now - it will come. (there was a moment when we sensed that DD was nearing the point of considering recovery when she started talking about wanting to go on holiday with her friends) But perhaps focus on distraction and creating space away from the ED. I've banged on about it on previous threads but one of the best pieces of advice CAMHS gave us was filling DD's day. Every evening we'd plan out the next day in 30 minute slots

8:00 Breakfast
8:30 Banagrams (distraction using mind and hands to avoid self harming and ED thoughts)
9:00 Cleaning kitchen (she found this therapeutic - we weren't turning life with and ED into a slavery situation 😉)
9:30 Cleaning kitchen
10:00 Go for short walk
10:30 Board game (to distract from what was coming at 11:00)
11:00 snack. etc etc

We were helped (and hindered) in that it was lockdown but this level of planning seemed to help DD both proactively (no surprises) but also knowing we were trying to squeeze out the ED from every possible minute...

You have to ignore all of those types of conversations, my dd came out with the same sorts of things.

Just keep doing what you're doing, keeping making the food and giving it to her and distracting her while she eats it.

I sometimes said to my dd 'I promise you won't always feel this way' when she was really struggling which was true.

I had a question about how your marriages have been affected by this? DH and I were having a bit of a tricky time before the ED came to light, and initially pulled together as a team really well.

But now the fatigue is setting in and we're not in a good place. I'm having to dig deep every day for patience, kindness and compassion for DD13 (and DS9) and sometimes I'm probably taking it out on DH a bit as he's the only person I have close to me that I can show it to.

I've tried to explain I need him to have the same compassion for me that I'm having to have for DD (as she's shutting DH out a lot) but it's falling on deaf ears. He shouted at me this morning as I called for him to help with DS shoes for school.

I just feel like I have no resilience and I can't deal with conflict with DH on top of it. I also can't cope without him. I know it's hard for him too.

Thanks everyone. I ended up writing her a letter, as she shut down and wouldn't talk to me at all. It worked in the sense that she broke down and sobbed, and did end up talking to me. Neither is nice, the silent anger or the sobbing despair, but at least she let me in a little. She was much brighter this morning and we're planning an outfit for a Halloween party she's desperate to go to. She was in complete denial again last night, and just blames me for "making everything worse" when she had it under control. Anyway, breakfast done and a new day.

Re me and DH - we're still in the early days of the ED and pulling together well. Although I just want to crawl into bed and hide from the world when I get there, which probably isn't great for a marriage.... I'm worried he's going to get too stressed out as he's done really well taking over when I've been too anxious. He's much more zen, but there has to be limits.

SwattyPie I'm glad she's opening up a but. It's a bit like cracking a hard nut, once you're in it starts to get easier to communicate. It takes a lot for my dd to have a proper emotional cry/breakdown but when she does we have our best chats afterwards and become a bit more bonded each time.

LittlePickleHead It is very hard on parents relationship. What works for us (after a few months of working out) is me being dds main carer, planning her meals, doing appointments and dealing with her emotions. Dh's role is primarily to support me to do that. He stays in the background, does jobs around the house, drives dd to and from college when needed, deals with relatives asking questions and really just keeps out of the way and NEVER interferes unless I ask him too. It's been tough on our relationship, one of us is often in the spare room because after a day dealing with dd I desperately need space to myself. We do snipe at each other but recognise it's often just the stress of the situation so it's over and done quickly. In some ways we are more bonded over this. We both realise the need keep going and not cause drama and issues for each other as we already have enough of that.

@LittlePickleHead Me and my husband are similar to @Whyisthishappeningtous we also try and find time to be just together and not talk about the eating disorder it is hard though but we really try even if it’s simply driving together to pick up a child ! Or walking the dog or even just having a drink before dinner

can I ask how much calcium do your children get I am worried how much I should be giving my An D after a talk with the dietician they have always told us we need lots but I don’t think I appreciated how much compared to a healthy teen

DD’s dietician prescribed calichew - she had this every morning - now she is eating more nutritiously then we don’t need this anymore - her blood tests showed her calcium levels which are important for her hormones and periods.

Anyone else's kids struggle with meds? Being prescribed olanzapine and fluoxetine was a turning point in getting my DD to eat again. We discovered she was holding on olanzapine in her mouth and spitting it out a few months ago, as she didn't like that it made her sleep more. Her psychiatrist has now stopped prescribing it, as she 'has capacity'. She now wants to stop her fluoxetine - and had in fact been doing the same with that before she was readmitted to hospital last week. She says it makes her emotionally numb. Her psychiatrist is strongly advising she goes back on both meds, but she just refuses.

As much as I appreciate our Camhs therapist, she can sometimes say things that make me cringe. For instance, I've been avoiding buying any food that says 'Diet' or 'Low fat' as advised by the dietitian. There has been no discussion with dd about these things. With yogurts I simply put them in front of her with the lid taken off and she eats them.

While dd was getting her obs done in another room I mentioned to the therapist that dd is now on 2 full fat Greek yogurts a day which is brilliant compared to the crappy diet ones she has previously always insisted on. When dd came back in the room the therapist said 'Mum tells me you're eating better yogurts'. wtf 😒. This was yesterday and I held my breath at lunchtime today worrying she would kick off but she did eat it. This isn't the first time something I've said has been repeated.

I appreciate the camhs appointments and it's so important that dd gets obs done weekly, but I often sit there worried about what they're going to say and whether it will scupper dds fragile recovery. I know the ED is a beast that needs to be poked but right now I just need to get dds food in in whatever ways I can. Surely if she's still too underweight for psychological treatment, then she's still too underweight to be having to be questioned about what she's eating each week and asked to make fear food goals. Surely I'm the one that should be talking about dds food as I'm the one that makes it all? Dd often doesn't even remember what she's eaten.
It's frustrating 😞

@why It's so frustrating. CAMHS have just been thrusting meal plans on us with very little else in terms of discussion. Why would someone who has been massively restricting suddenly agree to a 1800 cal diet with no further support? DD thinks now she's back to 3 (albeit small) meals and snacks (1500), she's all good, thank you very much. There is no way she's going to accept the next increase without a fight. She's still massively counting calories and literally scraping through each day. I do appreciate the support Camhs have given us in getting things moving in the right direction but I feel there is a massive but lacking when it comes to discussion.

@Whyisthishappeningtous I hear you - DD’s therapist would say things that weaponised DD after the meetings, the one I remember most is that ‘cordial is OK’ when we were trying to get as many calories in her, liquid calories as well.

DD hated the meetings and soon only DH and I would attend. DD accepted what we had discussed with the therapist and we put those things in place.

At weight restoration we appointed a private (non-ED) therapist.

We soon realised that FBT is on us, CAMH are no help and I gained more by reading, researching and asking those on this forum for help and advice.

In desperate need of advice/info.

This might be s bit long - sorry!

My 13 year old ddwas diagnosed with depression and anxiety last year. She is into week 4 on Fluoxetine due to a deterioration in her mental state.

She has now more or less stopped eating. She was seen by the GP yesterday and weighed and is having a blood test today and ECG next week. Her psychiatrist brought her review forward to today and says clearly there is an eating disorder though she’s not presenting with typical thought patterns. She’s not been eating at school all term, very rarely has breakfast so it’s been going on some time but she has just refused to eat more than minimal amounts for the last 10 days.

She’s increasing the dose of the meds and said she would look into finding an eating disorders specialist as it’s not her area of expertise (we thought we were lucky to be able to see her privately through my husband’s insurance) - she then messaged after our appointment to ask if I can get the GP to refer to CaHMS.

What can I actually do to help her? My husband wants me to force her to sit at the table / but I can’t make her eat? I just don’t know what to do…😕

Sorry there were a lot of hers in my post - hopefully clear which ones refer to Dd and which ones to Dr! My brain is a mess.

magnummum I'm sorry you're going through this. I'm not as experienced as many posters here. I expect you'll have some great advice coming along soon. Definitely get the camhs referral sorted asap. In some areas you can refer her yourself.

In terms of what you can do right now - although Camhs will monitor her physically and give you meal plans, the real work is at home and can start right away. It's called FBT - Family based therapy. You're right, you can't force her to eat but you can talk to her and say she is ill, and as her mum you are the one who is going to help her get better because you love her and you know what she needs. Explain that each day you'll make her meals and snacks (3 meals and 3 snacks) and sit with her while she eats. The sooner you start this routine the better. She may be upset or cross and you will need to stay calm and consistent, encouraging and empathising. We watch tv as a distraction. Sitting together for a while after the meal is recommended as she may feel bad. We watch TV, look atunny videos online or play a game. If she won't eat at school she may need to be part time or you could go and sit with her in the car for lunch. If she does physical clubs such as dance or sports these will need to stop as well as PE. You'll need to speak to school or camhs can do that for you.

Those are some practical tips that helped me and I hope may help you for now in this early phase. Wishing you the best of luck x

@magnummum welcome and sorry you are here.
@Whyisthishappeningtous is right that that ED treatment is done at home usually.
However before that I would say that if she has eaten less than 500 cals for 4 days or more she needs urgent physical checks. This should ideally be done at A and E altho the thought of that at the moment isn't easy. If she has been severely restricting for 10 days she is at danger of refeeding syndrome if you suddenly up her cals without medical supervision.
Do you know how much weight she has lost and how quickly? Is the Gp gast tracking the blood results?
Please check if you can self refer to the ED part of CAMHS locally to you. You need the ED service not general CAMHS and they may be called different things abd have different referral process depending on where you live.
What did the GP say yesterday?

D1ANA22 SwattyPie

I've learned so much and had advice that actually makes sense from here and books and YouTube videos, than from camhs sessions. Advice from parents who have been through this is invaluable and it's keeping me going tbh. I wish I'd found you all earlier. I made so many mistakes in the beginning and lost valuable time waiting for camhs help, which I'd hoped was going to be a magical & quick cure (if only).

Hi sorry you've had to find us.

If your dd has been restricting for a while she needs a full medical once over and the refeeding process may need to be done in hospital due to the risk of refeeding syndrome. The quickest way to get her checked is to go to a&e.

Did the food restriction coincide with starting the antidepressants? If so you may need to consider if they've affected her appetite.

Otherwise yes your husband is right, you do have to force her to eat and you have to do that 6 times a day. It's carnage but also imperative to save her life.

Thank you so much for all of your advice I really appreciate it. Definitely been 10 days at least - haven’t heard of refeeding - no mention from GP or psychiatrist😕. Bloods being done this morning, GP weighed her on Wed, being done again today and again next Thursday when she has an ECG booked. Do I just take her to A&E today? - not even sure how as she’ll refuse to get in the car. Sorry for posting at this hour - can’t sleep.

Re meds - seems to have been going on much longer than she’s been on them. When I asked her yesterday if she’s annoyed that it’s been discovered she said yes.

Magnum yes you put her in the car and take her, there's a checklist called MEEDs (I think) which has a list of all the checks they need to do. Ideally they'll admit her and start refeeding in hospital.

You need to start gearing up for FBT (family based treatment) this is where you take full control of her eating and she HAS to eat what you give her, 3 meals and 3 snacks a day.

FBT done right is complete carnage as once the ED is discovered it will kick off big time. She will behave in some shocking ways which unfortunately is very normal.

She'll probably need to come out of school and if you work you'll need time off.

If the restriction has been going on a while then the anxiety and depression maybe linked to that in which case once the calories and fats start going in you should see a shift in her mood as well.

Thank you so much for all of the advice. Lots to think about and look into. Day at a time and all that.

In a more light hearted vein I wanted to point out that my username is in reference to a certain moustachioed detective not an ice cream as it struck me it may come across as a bit inappropriate on an ED thread!

DD about to be discharged from her 5th hospital admission today. She fessed up to not having her meds in hospital at all. (We knew she'd started spitting them out just before this admission, but she said she'd been having them in hospital). She did work on a meal plan with me while we were there, which was sent for review to the dietician. (She's very rigid about eating and would always go to A&E for an NG feed rather than eat outside a very small range - hospital said we had to stop the NG plan in the end as it was doing more harm than good). Dietician has bent over backwards to accommodate her, but when she emailed us the edits which would make it sufficient - things like 3 Quorn sausages rather than 2, and increasing size of veg curry by half, Nature Valley bar rather than a Nakd bar, DD emailed back "Lol. No chance." Just feel like we are going round in circles - admission, eats narrow range or drinks shakes in hospital, weight gain and obs improve, discharge, won't eat enough, weight loss, hospital admission... We've had 10 months of this, and she weighs less than when I first took her to the GP. She's just said to her dad, "When will you get it into your head that I don't want to recover?". I could cry. Not expecting solutions - just felt the need to vent!

Sorry @NanFlanders to read your post and the position you are in. Early on when my DD was diagnosed I read that we had to be their hope until they find hope themselves, but it’s so bloody hard against their resistance.

Thinking of you all.

@NanFlanders am so sorry to read this. It had a real resonance for me as we had the same experience - we ping ponged in and out of hospital admissions and also did supervised refeeding twice at home. It was such a despairing time and I (and I hope this doesn't upset you too much) genuinely felt we wouldn't win this battle. I remember writing a comment on one of these threads sharing my fears and saying something like 'it feels like our window is closing'. I felt a bit of a fraud almost to write a couple of days later that Dd had decided to recover. But I do think maybe part of her trigger of possible hope was seeing that abject fear becoming very real.

I share this partly so you know others understand where you're at but also to echo @D1ANA22 that you never know when that flipping of the switch will come so keep holding on to that future