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 So sorry to hear this. It just steals so much from them, doesn't it?

Oh gosh @myrtleWilson that sounds so tough, I'm really sorry to see it all outlined. It's particularly cruel that this illness is hitting our kids just at a really formative time. My brother in law said to me sadly recently, 'she [his dd, our niece, yes there's the genes] has spent well over a year of her teenage years in hospital'.

I hope she'll be able to find a circuitous route to where she wants/needs to be in the future.

myrtleWilson I'm really sorry and sad for you and your daughter, I know cliche but exam results really are not everything and getting to a place to full recovery when nothing triggers them is much more important and will ultimately lead to a higher quality of life than any exam result can lead to. Nevertheless it still is so unfair and sad x

Thank you for your message, I tried camhs but didn't really like it. I am looking into stuff the school offers but it isn't very helpful. I'll probably figure it out myself eventually.

@HilarityEnsues thank you for your kind message :)

God its relentless and exhausting isn't it? I can't see our lives ever being normal again. I'm on edge all the time. Dd won't let dh take over anything. I do all the long tedious mealtimes, the appointments, the constant therapy chats/pep talks, the depressing shopping trips, liasing with college. Dh went away for a week and honestly, it was so much easier. He's great and such a good dad but dd has pushed him away and he struggles and it's just another thing that feels like its on my shoulders to try and help their relationship. He also needs everything explaining after appointments etc and I just cant be bothered going over it all every time, and I'm always worried he'll say the wrong thing to dd because he can be a bull in a china shop. I've started sleeping in the spare room because I feel like I need some space even when I'm asleep. How do relationships survive this?

Sorry that turned into such a me me me moaning post!

@Whyisthishappeningtous i know exactly what you mean. This was us one year ago. Fast forward to now and things are on a much better keel. I don't think their relationship will ever be what it was before, but I'm no longer on edge if the two of them are in together

@Whyisthishappeningtous every word in your post is resonating with me at the moment, down to the fact DH just went away and it was easier. It's so so hard x

@Whyisthishappeningtous I could have written that (and did!) 18m ago. I think sufferers gravitate to one person and my DH was also not emotionally capable of dealing with DD's outbursts or sadness. He is a catastrophiser which was v u helpful. He also didn't bother to teach himself anything or join the on line sessions (as he was working- so was I or trying to). Generally he was not v useful and sometimes downright destructive (enabling exercise etc)
It nearly broke us. And tbh we still are not great although DDs relationship with him is good.
Sorry I am not being that helpful. I guess I empathise totally. Esp around DHs being almost an extra burden.

Even though dds Dad is not in the picture my dds relationship with my mum took a serious battering at the height of the illness. I agree the sufferer tends to latch onto one person and I suppose for my dd it would have been near on impossible to stay angry at me for months on end (although she did try her best!)

I think when you're in charge of feeding them it creates a very strange sort of dependency on you not dissimilar to when dd was a tiny baby and I was bfing her! I literally couldn't leave her for more than a couple of hours as I needed to be there to get the next meal or snack in.

All of my dds anger and resentment was aimed at my mum, my mum has always encouraged dd to exercise and pre ED that was their thing so I think dd blamed my mum esp for the exercise compulsion.

It was heartbreaking as pre ED they'd been v v close as my mum has been heavily involved in bringing dd up since she was born.

Fast forward a couple of years and they are slowly rebuilding their relationship and even managed a wend away together this summer.

I can totally see how the illness would destroy even the strongest of relationships 😕

Have you had a look at some of the Tabitha Farrah stuff? She has written some books and I think has a blog. She has recovered from anorexia and is very good at explaining the relationship between avoiding food therefore creating a fear of food and how the brain then deals with that fear - ie it chucks loads of negative thoughts and feelings at the perceived threat (food) because the brain thinks it's doing you a favour.

I have obviously massively oversimplified that but anorexia is absolutely no different to any other irrational fear or phobia which all start by avoiding something.

Anxiety is rooted in a belief that it's keeping you safe which is not true and in the case of anorexia the opposite is actually true.

The only way to recover is to face that fear and to face it over and over again to reprogram your brain until it accepts that food is nothing to be afraid of.

@Whyisthishappeningtous I am sorry I don’t have much advice but that you are not alone my husband tries everything he can to help he will read books, do courses but try as he might D just won’t open up to him and they are so similar they clash. She won’t let him go to Camhs sessions so like you I often can’t be bothered to repeat the session for him he wants to know they why behind everything so the illogical nature of the illness he struggles with. He also gets very angry at her as he sees how distressed she makes me so it feels like I am a mediator in the UN half the time in this house ! He is also so practical minded he just thinks by saying it’s fine the food won’t hurt you that she will suddenly believe it. Sorry that was also a rant from me I just basically wanted to convey you are not alone.

Oh also I can totally relate to the exercise thing Girliefriendlikespuppies my D and hubby were massively into sport spending every weekend driving her to her competitions across the country and often she would go an support hubby in his races. He volunteered at her sports clubs and he would stay overnight at hotels so he can support her at some competitions miles away so he struggles with what to do and talk about now

Hi everyone, my 12 year old dd has anorexia... it's only been 8 weeks but it feels like a lifetime. One thing I am struggling with (apart from the obvious) is the guilt and constantly questioning myself on what I did wrong. Its particularly painful for me because I've been a SAHM and really dedicated my life these last 14 years to giving my children the best possible childhood.

Hi fairy welcome although sorry you've had to find this thread.

Your dds anorexia is not your fault, anorexia is largely a biological and genetic illness that can effect anyone from any background. I'm sure all the mums on this thread have felt varying amounts of guilt at times however ultimately we did not cause this illness anymore than we could cause any other brain based illness.

Sooo hard.
I empathise

Hi @fairylights82 and welcome. We have all felt like this. My DD was 13 and I too was a SAHM. It's like you have failed at your only job and I totally understand how you feel. Unless you have lived through this process you can't understand the guilt and heartache. I was also extremely guilty that I hadn't noticed her weight loss or more accurately I had put my head in the sand. It's so common. Why didn't I act sooner? But this illness is devious. It tricks and deceives. Plus the recieved wisdom on eating issues is to 'let them make their own decisions', back off, give independence. All of which are the polar opposite of what a carer should be doing to fight an ED.
However you do have to move past it. I put all my energies into DDs recovery. It is an all consuming process which takes over your life and that of your family. There isn't the time or the emotional energy to devote to guilt. AN is a serious mental illness which is biologically based and occurs when a genetically predisposed individual loses weight.
Your DD is young. Full recovery is more likely with younger sufferers when action happens swiftly. I am sure your DD can get better.
Massive hand hold here.

Morning everyone. I first posted a couple of weeks ago - we have not yet seen anyone about DD14 but issues have been going on for many months we have a nurse's appointment a week tomorrow.

We have no scales at home but last night, with her agreement, I blind weighed her at a relative's house.

She is only 4 foot 11 but weighed 5 stone fully clothed. So that is under the 1% centile wfh or 14.4 BMI (I am confused as the BMI bit as NHS site says they don't use BMI for children but other sites class a BMI of under 15 as 'Severe anorexia' etc??)

I feel terrified by this prospect t as obviously I have been worried she is underweight for a while but now I know for sure.

She is terrified of the nurse's appointment but I suspect that it will be the dampest of damp squibs and they will say Oh Dear, here's a leaflet about guided breathing, try to stress less and eat more and come back in a couple of months?? May be a referral to CAHMS with a massive long waiting list??

Is this most likely scenario? Or could something more dramatic given her low weight e.g. they insist on a visit to hospital to check her heart etc? Say she can't go to school Or is this all very unlikely and am I the one being dramatic?!

I have no idea what to expect....

DD was 5.5 stone and 5 foot 1 when she got her first appointment with the ED team She was admitted to hospital immediately. What type of nurse is your appointment with? Are they specialist ED? We had months with a community dietitian who was lovely but kept saying not to worry, but then the ED team said the exact opposite and she was in a critical state.
I don't want to scare you but she does sound critically low. Do you know how many calories she is eating in a day?

@basilbrush how old is your DD?
If this is a GP practice nurse with no ED experience then your fears of being fobbed off are not unrealistic..
If your DD is under 16 I would call the practice and ask to speak to the nurse ahead of your appointment and lay out what you want from the consultation. Which for me would be
Height and weight (blind)
Full blood tests
Blood pressure
Heart rate on sitting and then after she stands
An ECG referral (or to be done there if they have the machinery)
An urgent referral to your ED service.

It is possible she will get sent to hospital if the nurse understands anything about EDs. But sadly the experience on here would suggest that most GPs know v little about EDs and you have to strongly advocate for your DD.

@Lottsbiffandsmudge She is 14 and it's just a normal nurse at the GP's surgery

@NCTDN I would estimate about 1000 calories a day so nothing as bad as some of the girls on here. She eats 3 meals a day and a snack after school but always very small portions. She has always been very petite and always had a small appetite which is why the current situation has sort of crept up on us in a way.... There is no logic to what she will or won't eat based on calories - she'll happily have a jam doughnut but refuse a poached egg etc...

Thanks so much everyone. I can't even begin to say the comfort it brings to know others are experiencing the same issues as I am. When I'm sitting at the table on my own with dd praying she'll finish everything without a fight it really helps to think of others doing the same. It's also helpful to know that dds issues with dh are a common theme. Dh has got comfort from that.

girlie yes it does feel very similar to having a baby to feed. It's often quite surreal. Dd has gone from a big independent teen who barely spoke to me, to a tiny dependent little girl who needs lots of comfort. She's never far away from me.

Basil** a 1000 calories a day is at least half of what a growing teen needs and most teens need closer to 3000 or more cals a day. I was also confused by my dds ED especially at the start as she never stopped eating but the portions reduced. She would however eat more in the evenings and would occasionally binge on biscuits etc.

She was still v v ill and narrowly missed admission for a v low heart rate at her first ED appointment.

Lots advice is spot on, have you noticed any other red flags such as does she feel cold? Does she have periods? Does she look a normal healthy colour (as opposed to grey/pale?) Does she have her usual energy levels?

I would also (if you're not already) crack on with squeezing as many calories into every mouthful as possible.

I agree with others basil you need to speak to the nurse beforehand and explain what you want from the appointment.
My dd is very slight and was never above the second percentile on the Childrens height and weight charts (which I then found hard when she was expected to get to 100%wfh).
I've put before though that actually being admitted to hospital was the best thing because it was the shock dd needed to realise she needed help.

Basil I really hope you have a good nurse who will fast track referral. I'm no expert but I've read a few times that taking to A&E speeds things up.

My dd is around 82% wfh - that's around 7 stone at 5 foot 6 age 16. She's eating 2000 calories a day and that only maintains her weight or gives a miniscule gain and that's with part time college dropped door to door and very little further activity. They need what feels like an enormous amount of food to them, to actually gain weight. It's a struggle to get more in but we're getting there at a snails pace and I'm learning to enrich every meal as much as I can without freaking her out.

At dds camhs assessment the therapist told dd that her body is failing and she may faint, have heart issues, hair falling out, dry peeling skin, break bones and may be unable to have children, no days out, no holidays and may die. I cried. It definitely got through to her. I have to remind her regularly (which kills me) but they need to know WHY they need a certain amount of food to avoid serious illness or worse.

Between the amazing group of people on here and the Facebook group I've learned so much more than through the camhs appointments which are mainly for her obs and to show dd that her illness is serious enough to have to attend weekly. There's a wealth of experience and support. I've got the Eva Musby book which is brilliant.

If your dd is open to it, I would start today sitting down together and writing down everything she eats right now and make a list of breakfasts, lunches, dinners and snacks that she enjoys. Use this to start a weekly meal plan. My dd responded well to this as she's extremely independent and needs some control and input into what she eats. I know it doesn't work for all.

Family based therapy of 3 meals olus 3 snacks is very simple but effective, even though it can take a while to get into the routine. My dd started on 1500 calories a day which she fought for a while, but even if it's not calorific enough at first it's good to get into the habit. You'll need to sit with her and eat the same. Then once she's into the routine of the 3 + 3 you can start making every meal the best that you can. I started with butter and cream in sauces in tiny amounts and slowly built up. I put olive oil in an old frylight bottle and use it liberally on pretty much everything - chicken nuggets soak up an enormous amount of oil. I do a bolognese, a curry and a carbonara with her portion coming in at 1000 calories. I can do hers separately because she doesn't like onions - luckily.

We're a few months in now and dds weight gain is very slow but her mental state and her willingness to get better is a million miles away from where she was.