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...

Magnum ime it's impossible to work and do FBT, I was signed off initially for 6 weeks and then again when dd had another blip for another 5 weeks.

I know some parents are signed off for a lot longer 6 months or more.

FBT is 24/7, to do it properly takes all your time and energy and you won't have time to think about anything else especially work. What have Camhs said about school? Is she well enough for school and will she eat there? Personally I think to start with you need to be with your dd almost constantly as you will either be getting her to eat, watching for obsessive exercise or any other ED behaviours.

Eva Musby talks about clearing the decks in terms of completely simplifying your life, cancelling as much as possible so that all you have to worry about is feeding your dd.

It's not dissimilar to being told your child has any other life threatening illness and is about to embark on gruelling treatment 😕

Girlie - that’s what I was thinking. Have got about 3/4 way through Eva Musby’s book after seeing it recommended on here so had a bit of an idea of the road ahead. DH do not on board/in denial despite nodding and agreeing with CAMHS yesterday.

Re school, they’ve said see how she’s managed with the meal plans up to/over the weekend. (We’re still on half term) and absolutely no sport if she does go back next week. Unfortunately they have a really long school day (don’t finish until 5).

Tonight was horrendous and she hasn’t managed any of her evening meal😕

@magnummum I really would liken it to a physical life threatening illness such as cancer when I was first told this I believed it was an exaggeration I am ashamed to say however it is not, it is a full time job and I don’t know if this is the same for others but even when I am not with D, cooking, shopping for food i al thinking about D and the ED in some way or else so I couldn’t concentrate on much else. I still forget simple things on a daily basis as I find my self so absorbed in looking after D.

does your husband understand the severity ? I found it helped my dad to understand who didn’t grasp how serious it that when I showed him studies with a more scientific slant such as comparing levels of certain hormones and also brain and bone scans and also a particular study I think it was called the Minnesota starvation study and this helped him realise that it wasn’t a choice or a phase

@Lottsbiffandsmudge please could I ask how you overcome the fitness barrier I think you have spoke about before that your D had, my D is a runner and competed at high level but is adamant that if she gets heavier she will get slower. Also the idea of losing her six pack is difficult for her

Talk to me about washing, people. DD has always been very good about showering and washing her hair, but the body dysmorphia has kicked in big time and she is really struggling. She hasn't showered since Sunday eve now, and I'm not pushing it as last time she was sobbing "please don't make me" and quite frankly, I have better fights to pick. She doesn't smell and certainly isn't sweating much, but her hair is getting a bit gross. If she can get through the day at school tomorrow, I don't care about the weekend, and know she'll wash before school next week. Has anyone got any tips I could suggest to help? I don't think she'll let me just wash her hair with the shower attachment. She's not in a good place right now. They're talking meds for mood - and I think she definitely needs them.

Magnum the mortality rate for childhood anorexia is similar to that of childhood leukaemia which is a sobering thought, I'm assuming if your dd has just been given a diagnosis of leukaemia your dh wouldn't be thinking life will carry on as normal next week....?

A lot depends though on whether you have a cooperative employer and whether you are in a financial place to do this, I'm not, having had time off already ironically for a loved ones cancer and being a lone parent. One of the biggest stressors when someone has cancer is how you will cope financially and losing ones house as you can't pay the mortgage would be even more stress and very destabilising for the ed child. In a ideal world, I think if you could take a few weeks off to start up the program that would be brilliant but not everyone can. Working from home would also make things easier.

Thanks for your replies ladies. Confirms what I’ve thought regarding work - sadly no possibility of working from home as I work with animals.

Can I also ask what you do about getting your child to come to/stay at the table/stopping them running off?

Apologies in advance but I think I’ll be leaning heavily on you all as real life support is lacking.

Magnum Eva Musby is good for getting them to the table, personally I used whatever leverage I could ie phone, going anywhere, doing anything etc would be on the provision she ate her food. Also I would take food to her and actually stopped eating at the table (for the most part) we still normally have dinner on our laps now in front of the telly!

Lots and lots of distractions, talk about absolutely anything other than food! I used to whittle on about any random thing I could think of just to distract her from the thoughts and the fact she was eating. Other distractions are telly, games, crafts, iPad etc.

Re work if you are financially struggling there are certain benefits you can claim for once you have a diagnosis, I think for under 16s it's DLA but also universal credit (depending on circumstances.) I was fortunate that my employer was fairly understanding and I get paid sick leave.

Too poorly for distractions - has spent the morning trying to climb out of windows 😕

So sorry magnum mum 😞

SwattyPie Slacking personal hygiene is often an indicator of how someone feels sadly 😔

Will she have a soak in the bath or a sit down shower? My dd has sometimes felt faint in the shower so we got a little stool to go in there.
Or maybe try soon after eating when she might have a bit more energy?
Or try some posh smellies to tempt her? Bath&Bodyworks is expensive but all the rage with teens. Superdrug do similar but cheaper.

magnummum no advice other than what's been said but a big hug to you. I chased dd around the garden and up the road. As the fats went in she got more compliant.

LittlePickleHead For me, getting away from the situation helps. I walk to our little local shop a lot. The staff must be sick of me. Just being away from the house, whatever the weather, reboots my mind a bit. When the tears do come they bring relief.

Over time I've become more resilient and more accepting of what dd is going through. I really resented her for a while and blamed her for what she was doing to herself and the effect on the family, her education etc. I think I needed to go through that in order to get those feelings out of the way and push forward and find the compassion and understanding that dd needs. I still have bad days (perimenopause really not helping my mood) and get cross with her but I'm quick to say sorry and put it out of my mind and move on, rather than stewing on it and resenting her for hours.

Today we had another appointment at the ED clinic, dd has put back on the weight lost previously which is good. She completely broke down in the session, full on crying saying she doesn't want this anymore she wants to get better and doesn't understand why anorexia is suddenly against her. She said anorexia normally shuts up when she doesn't eat but nothing shuts it up anymore and she's really struggling. She seems on board with the eating but experience tells me anorexia is gonna try pull her back harder. Her therapist said the next few weeks will be even harder for dd but if she pushes through anorexia will quieten.
Any tips on getting me through the next few weeks?

Sorry been MIA....
In terms of fitness we majored very much on strength. When my DD was secretly losing weight and over exercising she ran a lot and her times were incredible. At the time I was quite amazed but that was before I realised (in hindsight) that she was in that wierd phase of weight loss when physical ability is improved. Before it crashes! Apparently in the early stages of starvation the body sends energy to the limbs and CV system so yoi can run further to find food. It's a primeval response which doesn't last long. But can mean athletes see performances improve which of course vindicates the weight loss to them...
Once we knew and were doing FBT, when she stressed about losing her fitness (about 100 times a day) i would just say 'this is what your body needs to perform and get stronger' she eventually admitted to me (onxe weight restored) that in her football matches in the weeks before we knew she had AN she often felt faint and that she might black out. It didn't stop her weight loss. By that point the ED was firmly in control.
She too was worried about her six pack. I never got into that discussion. I just deflected.
She was allowed to follow an exercise program (designed by her FA coach) throughout. That was our leverage. No food, no exercise.
Of course she also exercised secretly and pushed her permitted exercise to the limit. It was a tough battle. We enforced rest days and they tended to be the days when she'd run off or pace round and round the garden in socks, or lie on the trampoline in the snow, or threaten to jump out of the window, or break my oven etc etc. I was bitten, sworn at, hit....
In the out turn she lost her 6 pack, but her fitness has obvs improved. She is v strong. She wins all the beep tests at her football club. And so we are vindicated.
She is happy with her body because it does what she needs it to do..

@cantthinkofabetterusername it's tough. Just keep saying you have her back. That you will fight the ED voice for her when she feels she can't. And lots of distraction. I couldn't leave my DD alone she was with me all the time. We binged watched TV, did lego, played games, I bathed with her. I reinstated the toddler bedtime routine which helped a lot.
You may want to Consider meds we found olanzapine extremely helpful in quietening the ED voice a little. It's not a magic bullet but it can help.

@Lottsbiffandsmudge thanks for this. I already tell her I've got her back 100% im ready to kick anorexias arse even if she doesn't think she can. How do I go about getting the meds? Im assuming via the gp? Or is it something the ED clinic can help with?

Yes Speak to ED clinic. She will need to see a psychiatrist. Openess to meds by ED teams seems to vary massively. Our ED key worker suggested drugs after a month hell after diagnosis. Our team were very pro olanzapine. It's an anti psychotic taken in a v low dose. There is no build up time.it acts straight away. The main immediate benefit is rhat it made her v sleepy and she'd been struggling to sleep. That wears off for most after a week or so but it still help with sleep. For us it took the edge off her ED voice. We eneded up increasing the dose 2 weeks later. It was still really difficult but indo think to helped. She came off it gradually about 3m after weight restoration with no issues.
Dd predictably didn't want to take it. We took the decision off her as she wasn't capable of making it. She was just 13 so and in CAMHS view a child so luckily we could make medical decisions.

After a few weeks of refusing meds, they are now properly out of DD's system - cue meltdowns. Genuine heart-rending howling and screaming. Saying she wished she'd been aborted. Then things really ramped up when I confiscated her phone (after a warning) for swearing - she kicked me repeatedly in the breast, then came down to the kitchen to try to get her phone back and hit and kicked DH repeatedly. A relatively calm couple of days, then she went to a gig last night. I fetched her and her mates, brought her home and she refused evening snack. DH lost it and (inexcusably - which he recognises) pushed her out of her room and she fell. Then she ran off into the night. Not for long, but we were both out looking for her and our younger son was obviously distressed - spoilt a good night for him, when he'd been able to have his mates round for a change. Massive row into the small hours with DH about the push. I can't believe we are here. A year ago, if you'd asked me, I would have said we were just unbelievably lucky - nice kids, doing well at school, happy family, loved our jobs, great marriage. If anorexia was a person, I'd stab it to f*ing death.

Sorry @NanFlanders to read what you are going through. No consolation but we’ve had a similar experience and no one understands how heartbreaking it is, your DD kicking and hitting and the torrent of vile abuse. Remember those calm days and pray that there are more of those around the corner.

Sending you love and strength NanFlanders
Facebook memories of our life before ED make me cry daily.

Thanks @D1ANA22 and @Whyisthishappeningtous - I knew people on here would understand. @Why - when I get those FB photos, I always send them to my DD - just to remind her what life is/could be without this monster.

Everything is shit. That is all. And if another person tells me to fix my own oxygen mask first I'll bloody scream. I would love to book myself out for a week of R&R but that ain't gonna happen is it? So fed up. Since diagnosis, we have made no progress in terms of weight and massive losses in terms of mental health and family relationships. I feel like I'm living in a morgue. So sorry to everyone else also stuck. Can someone send some hope please? I cannot see a way out of this hell.

@SwattyPie it sounds like you are having the worst weekend, hugs to you. I'm not going to offer much advice, just to say, I think screaming 'life is shit' is very therapeutic, the car is a good place for that, my dd came out of her CAMHS meeting and said 'can I scream, mum' and I said 'go ahead', so she did several times. This is so exhausting. Screaming is entirely appropriate. All I can also say is that things do and can change, even when you think they can't- what I've seen on this board is, though, that things often have to reach a crisis (which may or may not involve psychiatry, hospitals) and that also things change for not entirely predictable reasons for the better sometimes too. I hope tomorrow is a better day for you.

@buteverythingisfine thank you for your reply. I am just so low. DD won't talk to me. It's the hours upon hours of silence. I am the enemy. She does not want to get better. It's all my fault. Of course. She still won't be talking to me tomorrow. It's been weeks and all I get is a yes/no/sure. I wish she would ask me if it was ok to scream.... I have had enough of this battle and seen nothing to give me any hope at all for weeks. Sorry for the self pity post. I don't want her to be hospitalized but I can't help wondering if she might see me as less of a villain after a stint elsewhere. God I just feel so sad.

So sorry SwattyPie. It's really really shit. Wouldn't it be great if we could all meet up for a weekend of booze, food (I miss restaurants so much) and crying.
Lots of love to you all ❤️