Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

Good luck for tomorrow @summertimesadness24 Dd couldn't eat but in hospital the desire to price she didn't need to be there was obviously stronger than the ED voice.
Don't let them fob you off. Cry, scream, do whatever it takes for them to listen to you.

Only read the end of this thread but thinking of you @summertimesadness24
My AN daughter is currently in Paeds ward for 4th time, looking at 3rd inpatient placing but ED team know it’s not the right place for her to be.

We’re 3 years in and things are worse than ever, don’t think she’s ever looked or felt so unwell or been so underweight.

I've spent the last 2 evenings reading this full thread. I'm so sad to read your stories, though I also dont feel so alone, I'd like to join if that's ok.

Dd is 14. I'd say her disordered eating started around 2.5/3 years ago, when she was 12. Started off skipping breakfast. Its been a bit see-sawy since then, but the last few months I've noticed shes become even more restrictive and is not eating enough. Never breakfast. She will snack at school, maybe pop corn and a sausage roll, and at home she sometimes eats dinner, sometimes just has a cheese sandwich. She eats chocolate too. Her overall calorie intake wont be enough and she looks thin. Her moodiness is horrendous and I am enemy no.1, as I try and encourage her to eat and tell her she hasn't eaten enough (maybe I shouldn't?)

Her dad and I are separated and she sees him every other weekend. He says she eats plenty at his, which makes me confused. And blame myself even more.

She is not in crisis like some of your children, but I feel we are on a cliff edge. I feel so stuck and unsure about how much to push her and whether to back off? I wonder about the power battle between us and whether she's doing it to get to me in some way? Unconsciously of course. Really feel lost at sea.

And im ashamed to admit, over the last couple of years there have been occasions where I've really lost my temper at her.

She seems so miserable and hateful towards me. Is it because I'm highlighting her behaviour? She completely blanks me and never interacts with me. I get no smiles or hugs at all. She wants nothing to do with me.

I too am worried that she will hate me forever.

Sending hugs to you all x

Oh summertimesadness24 I really feel for you. I hope she either starts eating or is admitted tomorrow. Sending hugs to you and dd x

Can I ask a question that I really hope doesn't sound goady, it's because I don't know what to do.

Does anyone feel that with hindsight, they wish they would have left their child to see if things got better on their own? It has seemed like when professional intervention happens, the ED really escalates.

Summer, just pondering, maybe you could check her pulse, and record it . I found it a problem that DD's blood pressure and heart rate was really low at home but at camhs or A&E it was (mostly) ok. (Dh is a cardiac patient and has a machine to measure blood pressure).

I did try that at first @Ididntsignuptothis and DD had someone close to her who was doing his best to help but ultimately it was beyond what I could do and she would have died without professional intervention but it depends how bad it is and how it’s impacting their health.

I would also say that your daughter may seem like she hates you but the anger usually is they are struggling so much and every day is hard. It’s really tough to not take it personally though. Anti-depressants have helped my DD with that massively.

Ididntsignuptothis,
Regarding your question, often DCs have had problems for ages, only in retrospect I realised my DC had been purging for at least 6 months. In fact when she relapsed it had again been going on for ages.
Once camhs started treatment she improved, but that took another 6 months.

On the other hand older daughter also had ED but improved without help/support when she went off to uni.

@summertimesadness24 oh how incredibly stressful. Can she, or has she been able to say more about 'cant'? What does that mean for her? Can she identify that there are 2 parts of her, and 1 part of her is very loud atm but you wonder what the very quiet part wants to say (may not be her style though)

@Ididntsignuptothis

We tried to fix it at home and failed.

Once the ED is called out it fights so strong, from what I understand the brain suffers once the weight is below 85% WFH. And that is is very hard to undo the damage without psychiatric intervention.

I have just finished a three day family therapy course, there was a parent who came in to give a talk about her experience. Her child was 81% WFH and they spent four months as in inpatient. Mine is at 71% and is a day patient. They are all different to how they respond but the general rule seems to be the critical 85%. Mine eats at home so she is being handled differently……I have to watch her like a hawk when she is at home. It’s exhausting and impossible to get anything else achieved when she is here. The day unit keeps her busy with craft and school work and therapy sessions.

@TootenCarMoon I'm so sorry to hear that, how horribly frightening.

@Slowlyimproving , that's interesting, and just shows the variance huh. How much in the grips was your elder dc whilst they were at home? If you don't mind me asking. I feel I'm walking a tightrope about it.

@Dinnerisburnt thank you.

Sorry i know this has probably been explained, can someone explain how to work out wfh? I looked it up but it goes straight to bmi stuff

Ididntsignuptothis
I think dd1 lowest weight was similar to dd2 lowest weight. But she started off as "wanting to eat healthy" and became half vegetarian. Added to this was the lockdown "allowed to go for a walk once a day"=disappear for a 3 hour walk daily.
I think once lockdown was over and she had uni to look forward to, she improved.
Dd2 had /had more issues and got to a stage of "no return" . Thanks to camhs she finally turned the corner

WFH is complicated. DD’s dietician works it out on an excel formula, but has explained to me that if have the red book with the chart in it……then my example might make sense

DD is 173cm and on the 91st percentile for her age for height.

her weight should also be on the 91st percentile line, that is 100%. She is currently on the 2nd percentile line 🤯.

someone might be able to give you the calculation so you can work it out accurately. I have a copy of it but haven’t been able to figure it out as I am crap at maths!

I also think that things are worse than you think. I kept thinking , oh in a few months things will improve, and few months became many months, and years. Add to this many months on the waiting list, I would advise to seek help soon rather than later. And keep pushing.

I use the NHS BMI calculator to work out what DC should weigh to be on the 50 centile. It's a bit trial and error.
Then calculate what percentage her real weight is

@Ididntsignuptothis I’ve found there have been 3 things which have helped us, our ED team (weekly FBT - DD is starting to talk to her therapists plus weekly parents group) and for me the EVA website and this forum, I’ve read lots of the old threads as well (at night when I can’t sleep). Even knowing we needed to implement 3+3 meals without the ED team meetings and support I think we would have struggled (early days were hell). Therefore if you can get CAMHS help I would, however the actual provision in different areas seem to vary.

@summertimesadness24 so sorry things have been so dire this week, I wish there was something I could suggest. Hope that the team take it seriously tomorrow and they have something they can offer, either admission or better support at home with eating. I don't know how you're coping with a toddler as well, you must be exhausted.

Hi @Ididntsignuptothis - sorry you've found yourself here. I've posted a few useful YouTube links a while back in this thread (I find them useful anyway!) - I think once the switch has been tripped and the person has an eating disorder it's very hard indeed for them to recover without some kind of treatment or intervention. The newest research has changed the understanding of eating disorders from being something psychiatric / psychological, into the understanding that it has a genetic and biological basis. The brains of people with anorexia in particular work differently to those who don't have it. In large part this is due to starvation - the body protects vital organs and strips energy away from the brain. So some of the previous treatment approaches - eg waiting for someone to want to recover, therapists seeing anorexia purely as a way of controlling life, and trying to convince the person out of this, don't have any evidence behind them. FBT, family based treatment (the t stands for treatment NOT therapy) has the best evidence for young people. This has three phases, with the first one being solely focussed on refeeding and physical (and brain) recovery.

At the point of diagnosis I think my dd had probably been restricting for around 4-6 months, maybe much longer, slowly at first and for ages, lots of similar 'healthy choices' and wanting to become vegetarian as other parents have experienced. But for about 6 weeks before diagnosis things had really started to get out of control. When I took her to the GP she was tormented - she couldn't sleep because of how many awful thoughts were in her mind about food, and she was throwing away lots of food - down the toilet. She slept with me for weeks and we would watch movies in the middle of the night on my iPad to distract her. There is no way she could have found her way out of that state by herself. If you haven't already, the Eva musby book is absolutely fantastic, and beat have resources on their website. Eating disorders don't have brilliant recovery rates, but early intervention is one of the key indicators in whether someone will be able to recover in the long term.

I remember at the start of this being really unsure if my dd really had a problem or whether I was imagining it. My dh was much more convinced we were over reacting, so I delayed doing anything for quite a while. Once we put the wheels in motion all of the facade came crashing down, and we saw just how unwell my dd was. About a month before diagnosis we were on holiday in a warm place, she was eating a quarter of an apple for breakfast and insisting she was feeling too full, she was freezing cold even in the hot sun, and shattered. Looking back I don't know how I didn't see it, but I didn't. If you think there is problem, it's best to investigate early and not leave it x

Ps - I calculate wfh like @Slowlyimproving says. It's easiest to do in kg I think...

1. Go to the bmi website for kids, and calculate what weight your dd would have to be to come out at 50th percentile

1. Divide your DD's actual weight by the weight you found above, and then multiply this by 100

Wfh is a very blunt tool, but it gives you an idea of where your dd is

@greydoor can you work mine out using that calculation please? I can send you a message with the details? Thank you

Hello everyone- my first post on here.

I'm a mum, thankfully my dc have no ED and hopefully never will have.

However I was the child with an ED and for some reason just saw the thread title and thought I'd come on here to share my story and hopefully give some of you light at the end of the tunnel.

I grew up in a DV environment which nowadays would mean I'd be taken from parents or put to live with 1 of them if they separated. Back in the day, no one at school (teachers or parents) commented when DM turned up to collect me with a black eye and bruises.
My DF was in prison Most of the time until I was about 6-7. Up until this age my mum kept me close, I'd sleep in her bed (it was my bed) for example, when my dad came home I got kicked out of my bed and put in my own room!
DV began when I was about 7-8 that I'm aware of.
My mum would sometimes run away. I'd wake up in the morning or get picked up from school to find she was 'gone'. Sometimes my dad would drive around looking for her, sometimes he'd say he didn't care. He wouldn't always remember to feed me and often if he asked I'd say I wasn't hungry which he accepted.
DM and I moved out regularly, to family's sofas for a night or a month or 2.
All messy.
At 14 I cracked and went mad at my dad as he was flinging my drunk mum around the bathroom (drunk as she'd been out with a friend, rarely went out).
He left when I was about 15-16.

My ED started when I was around 8. Not in the usual way I expect but I would overeat sometimes when at family's (when flee from home). I remember eating 4 big jacket potatoes one teatime and family all commenting. I remember one day after dinner having ice cream and asking for bread with it! Not at home though.
I think this binging was related to my emotions.

I began going without food from about 14. I'd be given dinner money, I just didn't spend it! I'd have a biscuit in the morning or sometimes save it until break or lunch.
Parents never noticed my weight loss and peers/ teachers/ family didn't either.
I liked feeling my ribs and my clothes being baggy.
I had started my periods age 13 and they stopped. This terrified me and actually pushed me to eat again as I was scared I was breaking myself. I didn't eat 'normal' but I ate a bit more than I was.

It was like that until I had my first proper bf intense relationship at 18. My weight ballooned from 7 stone to 11. I was happy and we ate although I went a bit mad in this relationship with overdoses and risky behaviour.
I was also making myself sick after some meals. My bf also had severe MH problems. We were in a relationship for 8 years.

Fast forward through bf's and life to now, I've been happily married for 13 years but will still binge eat. Things were intense in this relationship to begin with (risky behaviour/ od/ me lying).
I loved (and do love) this man more than but a similar emotional level to my first bf.

I self harmed by cutting on/ off for years but don't do that now.

It's been shit but I'm ok now thankfully.

I think if I'd have had someone to talk to right at the start who could tell me it's ok to say I'm sad or who would just have been there and listened it could have helped so much.

It's like as a teenager I shut off almost and wouldn't have listened to parents but possibly would have if counselling was a thing back then?

I hope this helps a parent on here.
Sometimes the child just isn't ready to listen/ change for the better and it's not your fault.

Thank you all so much. I really appreciate you're advice and wisdom.

The thing about my dd is she certainly isnt under a healthy eating spell. Her diet is appalling (I never tell her this ofc) but its mainly junk food and sugar, she's not eating home cooked dinners more and more. I guess perceived safe food lands where it lands.

Lately she will increasing eat less in the day, and then eat chocolate at night (she stays up later than us. She does seem to eat more when I'm not around. I guess she feels watched by me) our bedroom is right by the bathroom and I've followed her up and waited outside before, no signs of purging as far as I can tell.

I have previously spoken to the gp about it but they said she needed bloods for the referral to camhs ED. Which my dd is phobic about and absolutely refuses, she would have to be held down which is too traumatic. I will push for referral without bloods.

Ididnt I think part of the power the ED has over us as parents is this fear that we will somehow make things worse by tackling it. Forcing your child to eat when they have an ED is traumatic and pushing them also increases the risk of self harm and suicidal thoughts.

I'm not sure there's an alternative though? The alternative would be allowing them to slowly starve themselves to death.

The behaviours often ramp up once the ED has been called out as it doesn't have to hide anymore and it's under pressure. This will almost always be directed at the primary carer who will get the brunt of the hatred and anger.

It's really important to separate what is ED and what is your child as they are not the same thing.

With your dd it sounds like disordered eating rather than classic anorexia. I would not make any judgments about what food she is eating, if she is restricting during the day then chocolate is the healthiest food she could eat in the evening as it is compacted calories for her.

It is absolutely okay to insist she eats a main meal and breakfast, it is also okay for you to discuss your concerns with the school so they can monitor lunch and Dr. My dd also has a severe needle phobia and we did hold her down to get the bloods.

Just also to add that I have never ever seen or heard DD vometing. Even though she did on and off for few years. ( also used to follow DD up and down the stairs.)
I started to recognise some stains in the toilet but that's it.
Also to mention DD used to binge on chocolate etc.

Just want to say presentation of ED may differ. Also treatment may vary. FBT did not work for us. DD continued school.
Despite all this she is thanks to professional treatment loads and loads better

Thank you @Girliefriendlikespuppies .i agree about the chocolate. I make sure we always have plenty of it. Do you think she will still be entitled to support/ intervention if she 'just' has disordered eating?

Another complication is her dad thinks I'm overreacting. I'm sure they discuss this, he is obv fave parent right now and she wants to live with him.

I agree also about shining the light on the Ed makes it worse. This is probably why she seems to find me so awful. It's honestly like she's possessed by a demon.

I've wondered about enforcing meals at home (as is part of fbt). I have tried this in the past and I'm ashamed to say have dropped the ball with it - she's made small improvements and i haven't had the stamina to maintain the fights about it. Its hard when you dont have the professional support too I guess.

The thing I worry about is it seems to be getting worse, slowly. I'm def going to speak to the gp about it. And I will watch the Eva m videos as someone else suggested, thank you

@Slowlyimproving can I ask why fbt didn't work for you? Did you dc need Inpatient treatment?

As some others, I see asd traits in my dd too and have wondered about the overlap.. she is SO particular and rigid about what she fancies eating, and there is no budging for her.