Teen Eating Disorders - Thread 6

[myrtleWilson]

Hello everyone, and welcome to anyone looking at these threads for the first time..

Here is a link to thread 5 www.mumsnet.com/Talk/eating_disorders/4360801-Teen-Eating-Disorders-Thread-5

We've seen such an increase in young people facing eating disorders and these threads are testament to that.

With that in mind, we thought we'd try to include at the start of each thread some resources that have helped us along the way to date. No one resource will be a panacea but hopefully this list will be a useful starting off point for any newcomers and a reflection for others. It is our first go at sharing a list of resources on a thread so it won't be perfect!

//www.beateatingdisorders.org.uk

anorexiafamily.com/?v=79cba1185463

//www.youtube.com/evamusby

//www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA

//www.orri-uk.com

//www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/eating-disorders/overview/

//www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf

[myrtleWilson]

Hopefully those on thread 5 will find their way over here.

If you're lurking and have worries or questions, please do jump on. We're not medical experts but all have lived experience of supporting our children with a variety of eating disorders. Regulars may like to recap their experience so far

My background - DD has had disordered eating for a while but this progressed to anorexia in 2020. Under lockdown she was hospitalised a few times for 're-feeding' and received decent CAMHS support at home (regular posters on this thread will know how variable CAMHS support can be)

She turned 18 almost a year ago and was discharged from CAMHS, attempted recovery, had a blip back into anorexia and is now in recovery again - which (fingers crossed) is going well - some may find it counter intuitive, but she's working with an PT with lived experience of eating disorders to build up strength in her body, change her approach to eating and her thought processes about her body. So far, its going well and better than when she was in CAMHS. Appreciate however this approach to recovery wouldn't work for everyone.

Our CAMHS experience included some decent distraction techniques for self harm and some work on reflective thinking which I'm always happy to share with anyone who may need it.

[Peanut82]

Thanks for the new thread

[ComplexNeeds]

Thanks for the new thread. Here’s my recap…
12 year old DD is having an extended assessment as they couldn’t decide if she had an ED or not at our initial assessment on Monday (it was the usual 3 hour one). They’ll see us again in 2 weeks and discuss how we’ve got on with 3+3+milk & puds and make a decision then. She’s 78% wfh so off school and sports. She has ADHD and on meds that suppress appetite so that does complicate things slightly. I’ve also been reading how ADHD can ‘produce’ disordered eating. The ED clinic called yesterday to give an appt time so I asked a few questions, she hinted that because she’s not lost weight (gained 2kg over 8 months) and has adhd they may not diagnose. So we’ve no idea if it’s an ED or not.
I’m now beating myself up and feel terribly guilty as she’s a huge competition in the next three weeks but because she can’t train has been dropped from the team. She’s devastated. And I don’t use that word lightly. If it turns out there’s no disordered eating and she’s just skinny she will be cross.

[NCTDN]

Thanks Myrtle.
My DD was in y11 when the first lockdown started. To say that it affected her badly is an understatement. She was devastated at not being able to do her GCSEs, have a prom, get a job and enjoy a carefree summer. Everything just stopped for her and being stuck inside the house with no direction was a downward spiral. She became obsessed with exercise and over time ate less and less.
It wasn't notice at first though and took till that autumn before we realised how much of an issue it was. She started to improve. Then the second lockdown came. We're got a community dietitian and followed her advice but looking back it was not enough. A referral to the CEDS team ended up with the initial appointment admitting dd into hospital at 69%wfh.
She's now back to around her pre ED weight. For her, body image has never been an issue and she actually hated her skinny body and would cry looking at it. She just couldn't justify eating when she hadn't 'earned' the food. Anxiety for her has definitely been the main issue and something that she is getting cbt for.
These threads have been the most amazing support over the last year. Thank you.

[Girliefriendlikespuppies]

Signing in, thanks Myrtle.

My dd is 15 (very nearly 16) and we are almost at the two year mark of when she first started restricting food. Lockdown was a disaster for her and she ramped up the food restriction. We saw the ED Camhs team at the end of the summer 2020 and started FBT at home.

Have gone through some very tough and dark times and there have been times where I wasn't sure dd would make it out the other side.

However she is now weight restored plus some and routinely eating 2500-3000 cals a day. Mental health has improved although we still have a way to go.

She still can't eat freely and there are still some anorexic behaviours lingering so I'm pushing on with weight gain.

What worked for us was blind weighing, keeping dd out of the kitchen and adding tons of extras to everything she ate. Plus routine and consistency.

[DarkBlueEyes]

Signing in, thanks Myrtle. Unfortunately we have had an awful morning and I'm really not sure how to deal with it.

DD wouldn't drink her juice to the level we wanted her to and threw it down the sink despite me telling her not to. We poured her more and told her she wouldn't be going to school OR to the big party she's excited about tonight, if she didn't drink it.

Totally kicked off. Tried to leave the house, and we blocked her from doing that. Tug of war over her school bag. Screaming, telling us we are horrible and she hates all of us. Then she kicked and punched her daddy who is the kindest most loving man ever. He is devastated.

Eventually she drank another mouthful of drink (iced tea so we were arguing over about 10 calories ffs) and we left for school. She sat in the back of the car and cried loudly and ostentatiously all the way there. Jumped out of the car before it had stopped and that was that.

So. We have to have a chat with her today and she needs to apologise to her dad or she won't go to the party. As you'll all know it's so hard because if she doesn't go to the party she probably will freak out and refuse to eat full stop. WWYD?

I never thought I'd really dislike my own child, but right now I'd happily sell her on eBay.

[Valleyofthedollymix]

A big thank you to both @Girliefriendlikespuppies and @myrtleWilson for your advice and support on here. I dropped off when I became weary of the whole thing, so I really appreciate the way that you've been consistent and sympathetic.

I listened to a woman called Harriet Brown on a podcast called Recovery Bites talking about FBT. I realised that the NHS would vaguely use this phrase but nobody actually explained to us what it meant, especially as she was diagnosed in the early 2021 lockdown. Most of what I learnt and applied has been through the support on here.

My recap. DD is now 15 (y10). First lockdown she put on weight very rapidly having always been v thin. It freaked her out so she began dieting in the summer, I rung the doctor in October, got fobbed off and she was diagnosed in the New Year. I still feel terrible for not noticing sooner but dieting actually made her look more like her old self.

She put on weight really well at first and got her period back. Then she plateaued then she lost it all as soon as school broke up for the summer holidays. Since September she has put on about 6kg or 15% of her bodyweight and is now at 84% or so. She missed half a term of school and is attending a v outpatient expensive clinic in London. She's now more or less back at school, attending the clinic two afternoons and beginning to regain some independence. Her periods seem to have returned. I'd like her to be bigger but I think she is now functioning reasonably well and we'll keep pushing but trying to strike a balance.

It's been bloody awful. I feel like I've been stuck in a private lockdown as the world opened up. It's affected my marriage, my work, my other children, my friendships. Personally I think I'm going to need a truckload of therapy once I get some headroom.

Doing your standard 3+3 with glacial weight gain - aim for about 2500 calories a day with 600-700 calories per meal and 200-250 per snack. No adding of cream etc as it doesn't work for us.

[Valleyofthedollymix]

@DarkBlueEyes we've had dd hitting us. It is honestly like demonic possession. When it's that bad we make a decision to stop and walk away otherwise it can escalate even more. When she's calmer we reiterate that we love her but this is not acceptable.

I have found myself full of resentment towards her.

[Girliefriendlikespuppies]

Oh God Dark sounds awful, I have been there with dd screaming about a mouthful of juice before.

Personally I would definitely carry through with the party threat. The ED has to know it can't win. Dd has thrown back at me 'oh well I won't eat then' when I've followed through on leverage but actually she does.

My dd was replaced by a monster at times last year, my dad was in the hospital at one point having had major heart surgery (she is usually very close to her grandad) and she was horrible about him and to me.

So yeah I get the selling them on eBay thing, it's grim.

Thankfully she has got better with weight gain.

I definitely think you're hitting extinction burst dark, keep going as the ED knows it's fucked.

[ugifletzet]

Reading this my heart goes out to you all. I developed anorexia as a teenager. I was horrible to be around in so many ways and I reduced my parents to tears on several occasions. I just want you to know that your DCs do still love and appreciate you even if it doesn't seem that way. Be consistent with the food rules. When you have anorexia eating is scary but uncertainty/the unknown is scarier, and when your children rail against you, deep down they want to know that you won't cave, that what you say is reliable and to be trusted. You all sound like you're doing a wonderful job and one day your children will acknowledge that even if they can't see it right now.

[usernamefornow]

I thought I'd have a read through here to see the other side of things as 30 years ago I put my parents through this. It's interesting and you are all loving parents doing your best with the odds stacked against you. I thought I'd add some things that might help with long term recovery.

Many will disagree, and be vocal about it, so I'll say now I will leave the thread immediately after posting to avoid getting dragged into a debate. Long and short term strategies are different, and if you are still at the early stage the process the short term strategies many be the only way. The early stage is the hardest, the most emotional, you do what you have to.

Firstly Anorexia is rarely about body image or size or even weight, it is often about control. It is common among high achieving perfectionists. It can be triggered by a feeling that life is spiralling out of control. It can be an exam issue, a friendship issue, a relationship issue, very often a school issue (bullying, lack of control over the school they go to or the exam subjects they are required to take or even control over what extra curricular activities they are allowed to do). It might help to sit back at consider what freedoms your dc has, and how controlled their life is.

With that in mind can you see how difficult it is for your dc to accept you taking over their food intake. Already struggling with the lack of control in their life, and having chosen food as the one, possibly only, thing they can control this is taken away from them. It exacerbates everything and feeds the ED. Obviously you have to take control, but this may explain the extreme reaction you get.

Next, once through the initial stage of getting your dc to a point where their life is not in danger please consider the following points:

Recovery is a long term goal. In the same way crash diets don't work long term neither does stuffing your dc with butter and cream at every opportunity. Please don't do this, for many reasons. Firstly it is extremely hard on the digestion. You know that feeling you get after a a few days in an all inclusive hotel eating very rich meals? Or after xmas? You feel bloated and crave beans on toast. Well, you are expecting your dc to eat like this day in and day out, and then act depressed when they push back and refuse a meal. Of course they do, their bodies are rebelling, they feel uncomfortable, they crave something refreshing and light the same way you would.

There is a reason hospitals say 3 meals and 3 snacks. That's normal meals, not overly rich heavy ones. You need to re-educate normal eating. You teach your dcs what a normal meal is, so that when they are at target they can gradually remove the extra snacks but retain the meals and retain the weight. Yes weight gain is slower but crucially it stays on. The risk with the loading with butter and cream approach is that when they move on they have no idea how to feed themselves to retain. They of course will not load with fats meaning what they think is ok, isn't ok and all their work will be lost.

Learning to eat normally is the ONLY way to avoid relapse.

Also, I note the comments about no school meaning no school work. OK, we have all just lived through lock down. It is well documented how teenage mental health was severely negatively impacted by lock down. Staying at home, deprived of school, or sport, of social clubs.... that's lock down. It is also the preferred treatment for anoretics. So, we are taking a teen with a severe mental health problem and putting them in a situation proven to worsen mental health. Anyone see the issue here. It's a disaster waiting to happen. They are stuck at home with literally nothing to do all day but obsess about their next meal.

FGS if your teen is bright, driven, musical, artistic, whatever it is allow them an outlet. You may need to limit is but give them something so they can keep in touch with their non ED self.

Now to wfh. Stop obsessing, your teen is an individual not a statistic. Look at them honestly. What is their natural build. From what I understand 100% is bang in the middle of the normal range. Well the normal range is a bell curve. They may naturally lie anywhere within that bell curve. Don't force their body to be something is shouldn't. Some small framed girls will be perfectly healthy well below, others may need to be above. Be honest with yourself, where on the bell curve should they be? Forget numbers, look at their skin, hair, energy, periods. If normal, they are fine.

Finally to the PP whose teen is working with a PT, well done. PTs have a different mind set. A healthy one. They are about building healthy, strong bodies. They educate about nutrition. They are fabulous, inspiring people to be strong. It changes the whole attitude to weight gain. No one, especially not an anorexic in recovery wants flabby thighs a saggy butt, and weak torso. Sadly, without some form of weights work thats what fast weight gain will give you. PTs also work on the brain and help teens decide to recover. As you well know, there is no recovery until the patient decides they want it.

I wish you all luck, and your teens even more luck.

[NCTDN]

@usernamefornow I don't know if you are still on here, but I see my daughter in everything you have put and absolutely agree. How are you now?

[ComplexNeeds]

@usernamefornow huge huge thanks for this amazing insight. As a relative newbie I’ve been questioning so much and you make so much sense. Thank you for taking the time to post your thoughts.

[myrtleWilson]

Thank you @ugifletzet and @usernamefornow - it is hard I think moving from living in crisis mode which you need to do in the early days to early recovery. I know DD feels (and she's right to an extent) that DH and I still fall into the trap of thinking her as 'anorexia DD' rather than "Dd moving out of anorexia) and thats because we're still mired in the trauma of the crisis mode.

I know I was anxious about the PT/exercise route as my crisis way of thinking immediately worried about it triggering her exercise compulsion again, in similar vein, on occasion, I probably would have liked her to work less because I was worried about her eating at work etc etc but that had to be balanced out against the boost it gave her mental health to be productive and it was sooooo important for her to have a space where they didn't know about the anorexia - she was just DD.

[C4tintherug]

Just dropped on here to find like minded people. Anyone else find weekends the worst? God I hate this. Just had an epic 2 hour battle about lunch and now waiting for the police to arrive as apparently I’m abusing her and she has called them. Our whole weekends are dominated by food and I look forward to the week as we all get respite with work and school.

[myrtleWilson]

Sorry, posted too soon.

I guess we've reflected as a family that the ED traps us all and tries to make our worlds incredibly tiny and the smaller that world gets the more reinforcing behaviours become. I remember one of the CAMHS therapists saying we had to set a time limit on meal/meal attempts and then move on to activity/distraction to ensure there was time in the day that wasn't dominated by food or by the anorexia - it was such a lightbulb moment (probably took longer to arrive because we were in lockdown) and I try to hold on to that realisation when my brain tries to revert to crisis mode thinking. I know we'll mess up along the way but its not just DD who has to have a different mind set to reach sustainable recovery - we do too.

[C4tintherug]

If we set a time limit on the meal and she doesn’t eat… then what…. We’ve been told food comes first and she needs to eat no matter what…. After an hour today, all she had eaten was some cucumber. She is still very underweight.

[myrtleWilson]

@C4tintherug - our advice was time limit and then replace anything not eaten with Fortisip or similar. If fortisip refused then meal counted as a refusal and after hitting meal refusal trigger level (I can't remember what ours was) then it was reported into CAMHS support worker/A&E as appropriate. (this was advice given to us relating to our circumstances at the time so I'd check with CAMHS for your specific needs). The timed approach was also reinforced when CAMHS did meal support with DD.

We previously had had many an hour coaxing, pleading, crying over lunch to find it was pretty much time to start all over again with snack. It just didn't give any space for anything other than food and for the anorexia to reinforce its messages. Am not saying the time limit approach worked like a charm but after a while it did move us from meal/snack times taking up to 8 hours a day to 2 hours a day

[Girliefriendlikespuppies]

Username thank you for your insight however I do disagree with a lot of what you say. Anorexia is caused by weight loss, it triggers a biological reaction in the body and brain and the anorexic behaviours (anxiety, obsessiveness, aggression) are directly linked to the brain being starved.

With that in mind the treatment has to be weight restoration and brain recovery, the quickest and best way to do that is with a lot of animal fats and a high calorie diet.

This isn't just me saying this, this is the current evidence based treatment. Anecdotally and personally with my own dd I have also found this to be true.

FBT done right will be traumatic however it also saves lives and has a good success rate.

[C4tintherug]

Thank you for your reply. I have read about others doing a similar approach on Facebook groups I have joined. I will speak with her key worker when we see them during the week. Can’t cope with all weekends and evenings being taken up like this. It’s distressing for her and also for us.

[Valleyofthedollymix]

Thank you so much to @ugifletzet and @usernamefornow for sharing a perspective from a recovered sufferer. It can be so hard to get into the mindset of my DD that I really appreciate this. I do so hope that one day she realises how much we love her and where we were coming from.

@Girliefriendlikespuppies and I have had debates over WFH and 'healthy' foods and have different perspectives. I would say that although anorexics share many traits, they are also individuals. What works for some families doesn't work for others. For us, trying to hide/add fats was disastrous. It broke trust and in the long term would have led to more restricting as she'd have thought that soup made her put on weight (rather than it being soup + cream).

That is not to say that it isn't great of others. God if I could supplement I would. I utterly respect every approach.

Second point about WFH does absolutely chime in with my thinking. I can never see the logic of 100% WFH used in a blanket way with no nuance. It doesn't take into account race or frame. I saw weight charts from the 70s that were wildly lower than today. Why are the contemporary ones more 'accurate' than those?

DD has her whole life been 25th for weight, 75th for height, which is currently what she is. Even when she put on lots of weight in lockdown she was still less than 90% WFH. Other people need to be more than 100% to be at the right weight. It feels arbitrary to me.

The psychiatrist she's seeing is adamant that research shows best recovery at 100%+. I find it difficult to argue with the medical establishment but a) DD will really struggle to be so much bigger than she's ever been and I doubt we'll get there and b) I think it would lead to more disordered thinking.

I have no evidence in the face of research but I guess I feel I know my daughter. Very very slow weight gain with a very healthy but normal meal plan has been sustainable for her and she's showing real body confidence and happiness at 6kg heavier. When previously she'd gained weight more rapidly she hated her body.

We are also giving her more freedom and allowing more exercise (a bit of one-on-one football training to help her confidence) than we've been 'prescribed'. Our logic chimes with what you've said @usernamefornow in that we don't want her to have nothing left when she is recovered - she needs to see her friends and do her sport.

[Girliefriendlikespuppies]

I think wfh is a useful guide but ultimately it has to be state not weight, once your child is eating freely and the anorexic behaviours are gone then you should be around the right weight. Generally I think they advice 10% over their usual centile place is be a good place to aim for.

We do indeed debates the pros and cons of supplementing food with additional foods such as cream valley. The trust issue is a tricky one as ultimately it's the ED that is suspicious and distrustful and I can live with deceiving the ED monster.

That said I think both our dds have been ill a similar length of time and are at a similar point in recovery so who knows who's right. This illness gaslights you so much I don't know which ways up half the time!!

[C4tintherug]

I’m not entirely sure where we should be aiming as a target weight as before all this she was overweight. As a younger child, she was on 91st centile weight and 50th height. I think she would be very unhappy if we suggested that as a target as would be perceived as overweight.

[Vespanest]

I have name changed for this and this is in no way a criticism and I am fully aware you do what you need to do and you are all inspirational.
I am involved with ED support and also have a DD with anorexia. This is a wonderful place where you are supporting each other but it is also an open forum that those with anorexia can read. Anorexia wants your children (and adults) not to trust those trying to help so openly talking about deceiving in regards to food is feeding the anorexia for those who search the internet for any information that gives power to the anorexia.
Again this is not a criticism it’s just to be mindful of the dangers that this will not just be read by care givers and for someone with an ED having trust can be a make or break in recovery.

[Valleyofthedollymix]

@Girliefriendlikespuppies I don't think either of us is right or wrong as there isn't a simple answer for ED recovery (sadly). I think everyone can only hope to do what is right for their particular child. The destination we're aiming for is the same, but we're taking different routes (but all born of love).

And debate is always healthy!