Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

@WoodenTrain I feel your ds needs to be admitted and if he refuses they can section him and will, 75% is very low that's when we were admitted and looking back now I can see how unwell he was and struggling. My son was told if he didn't comply he'd lose his choices as they were going to save his life.

@greydoor well done! She ate, that's a big step in the right direction.

@NanFlanders I'm sorry things seem to be heading south, I wish I had some advice. Try not to dwell on the missed dessert and see how tomorrow goes, I hope it's a one off.

Hi to the new parents and any others I've missed, I feel this weekend has gone by in a blur, life actually is since ds became unwell. He's had a good week and tackled all of the clinic's challenges and more, so I'm hoping we might (holds breath) be turning a corner.

Hi @Mummyoflittledragon I'm sorry to hear about your DD. I do agree with all advice given, it sounds as if her mind has very much been captured by an ED which explains the sudden outbursts and aggression. You must remember it's not her, it's the ED. It's as if this behaviour is her last resort/way of coping with the stress of being told to eat, which the ED is very angry at. Of course this doesn't excuse the behaviour, but it helps to think of it as an external reaction which you can work to overcome.

I haven't had much time to catch up, been so busy with accompanying DD 24/7. She exercises in her room at night so I've started sleeping in there with her to monitor. She also struggles with self-harm and I have a feeling this could be an issue again with her food increasing. We're managing about 1300-1400 calories daily now, just about. DD still controls all food but I'm afraid to start tackling that in case it sends us back to where we were a month or so ago.
She's been out of college for months. Would be in year 13 but started year 12 again in September due to ED, before leaving again in November. We think it's unlikely she'll be able to manage the rest of this year, she's missed so much work already. Of course her government funding stops after 3 years at college, and she's in her second already. Has anyone else experienced this and decided to pay for an extra year or two for A-level courses? She is keen to get them done and I'd be happy to fund it but it must be left until the right time, I think.

Thanks @lyriccat. Yes, I am thinking of it as an external reaction but not able to overcome it right now. Working through the Eva Musby book and sat with it outside her bedroom door reading / adapting the phrases as she sat against the door to prevent me from going in.

Dd has always had tendencies to control me and I could see her starting to control me again before she went veggie and I addressed it somewhat but with a wilful teenager it’s hard. Trying not to be scared of her as I’m disabled and she could seriously hurt me.

@Proseccoismyfriend I agree, I think he needs admitting, he’s just not following the 3x snacks and 3x meals. The more I try to make him eat, the less he’s eating. He has no insight into his condition.

There seems to be no sense of urgency among the health care professionals we’ve seen. We saw his CPN today and he was at least honest with her which is a bit of a breakthrough. Admitted he deliberately restricts calories and chooses not to eat despite feeling hungry. She weighed him and he was 44.9kg. When asked what he thought about that he said he thought that was a good weight for him and he wouldn’t want to be any higher than that.

She’s now referred him to the ED team but no indication of how long the wait will be. Said she would weigh him fortnightly in the meantime. I’m just hoping the ED team realise the severity of the situation and we see them soon. He can’t just be left to keep losing weight surely?

There was nothing mentioned in the appt about him needing to eat more or how to go about increasing his weight. She suggested the GP could prescribe supplements, he refused and she told him that no one was going to make him do anything he didn’t want to do! Ok, so seems the plan is to let him starve to death. Just feel totally out my depth here

@WoodenTrain - I'm really shocked by the situation with your DS. If he won't let the professionals take his obs, will he let you measure his heart rate on an app? If it's bradycardia (under 60 BPM) then could you get him to A&E? Or even call an ambulance?

WoodenTrain

I really hope you get an assessment with ED team soon. It's absolutely terrifying that children are just left to continue losing weight and that parents are left i such a difficult situation desperately trying to get them to eat. We see on this thread that it's happening time and time again. My dd was also very stubborn about holding on to her low weight and was eating less and less. It took weeks/months to turn around her mindset. I had to point blank tell her each day that if she carried on like this she would..

Never leave home
Never have children
Never travel
Never learn to drive
Never work
Lose hair
Lose teeth
Break bones
Be bed bound
And ultimately die well before her time.

It was awful to have to keep pointing these things out but at some point she listened and began to trust me to give her the food she needed. Antidepressants also helped massively.
My heart goes out to you.

Summertimesadness24 so sorry dd is SH. It's a testament to your relationship that she's open with you about it. My dd's SH eased but only after she had been WR for some time and started meds. It takes time for the brain to catch up.

We are doing OK here. Dd has a lot of social stuff going on around Easter so she'll be out a lot and I know her cals will drop. As always it's a toss up between her getting on with life and eating enough. I can't hold her hostage at 18. I hold onto hope that fun with friends and seeing what the outside world has to offer will be the key to recovery.

I agree it’s shocking the lack of help available. It really feels like no one cares whether he lives or dies. I assume they are not that callous in which case the issue is more lack of awareness. I feel like we are in a high risk of death situation but everyone just seems so blasé about it. Unless it’s me that’s overreacting? I don’t know.

We’ve got an appointment tomorrow for bloods and an ECG. He’s massively agitated and anxious today said he doesn’t like all ‘the medical stuff’. He’s only eaten around 500-600 calories today. I feel like everyday he eats less than the day before. I just don’t know how much longer we can continue like this.

Wooden that's good he has obs booked, I agree with everyone else that he needs admission. If he refuses I'd push to get him sectioned tbh.

@WoodenTrain Hope you get some help at the appointment today. Thinking of you.

@WoodenTrain I don't want to scare you but when my DD was admitted I had to
Push push push and I'm sure they only did it to shut me up
On 500 calories a day they really weren't bothered at all - she did 4 days of no food intake and they still said they will leave it the weekend with nothing before they considered the next step which was the tube
Luckily then she started to eat

I'm thinking push for admission and maybe only then may things change

My DD went through daily bloods, cannulas being in and out, monitored 4 hrs so she didn't even get a night sleep without a nurse coming in to do her obs - I honestly felt like this reset her and she was begging to come home
I felt like you did - was I over reacting or thinking 'can she die ' but until I broke down and practically begged and that did involve me crying to one nurse and until I said
' her intention is to die please help her '
I also backed this up by sending daily emails do the ED team ( I'm now talking to pals about the lack of care she received) but for us I felt it was the shouting and screaming that got her admitted
And your son has a much lower wfh than my DD did and she was very unwell

Sending hugs x

And to add my DD obs were always always ok so I wouldn't rely on that alone
The way I see it I would be waiting for him to drop - it may be days/weeks but it will happen so don't let his body struggle to get to a place where intervention is needed
Also the brain is in starvation mode so the longer no calories the worst it will be

Is 100% wfh the ‘average’ weight for that height & age? So 50th centile?

@NotDonna Yes.

Rough Day (again)

ED team aren’t accepting the new referral. CAMHS told me to refer back to ED team, A&e told me to refer back to ED team. ED team told me to go back to CAMHS.

My own MH has nosedived, I don’t know how to hold myself together to stop my DD getting worse. Just walked home from town in the rain with no coat or shoes on, crying, like a crazy person.

@Glitterfarti So sorry you are having to deal with this absolute shit show.

Have you contacted PALS? Is your DD eating at the moment? I am losing a bit track of the thread.

Oh @Glitterfarti thats beyond shit! What the heck is the ED team’s reasoning? If DD not eating is it worth a trip back to A&E?

Thanks @Curlyhairedassasin , she is eating (about 800 calories a day) but so slowly. When I think she seems a bit happier she withdraws and is sad/lethargic again - fell asleep on the wooden floor after lunch yesterday and stayed there for two hours.

I haven’t contacted PALs because I’m half convinced I’m being completely neurotic because she’s maintaining between 81-83% and ED team seem to think that’s ok (but don’t let her do any exercise or go to school full time) so she’s missing out on so much childhood.

That's way too little. I am amazed she is maintaining at that level. that is what my then 12 year old had when her heart rated dropped to 35/ECG and bloods became abnormal and she was admitted to hospital. I would certainly contact Pals and not told back. Your DD is being massively failed.

@Glitterfarti definitely contact pals

@Glitterfarti i know you are on your knees and I really feel for you having been there myself but keep contacting them and begging for intervention. My DD would also sleep for hours after eating a tiny amount. From what I can gather the services are overstretched and therefore only seeing those who are at their lowest, bloods off etc. But we all know that things can go downhill very quickly so we have to fight to get our DC seen asap. It doesn’t feel to me as though we can trust the NHS to keep them safe. I feel awful writing that as I know that anybody working in an ED service has a very particular vocation and possibly one of the hardest jobs in the world.
As PP have said go to A&E if she has heart palpitations or is faint or not eating anything. There may not be much they can do but at least you will get obs done and she can be admitted if necessary. I also took my DD to A&E because she was sleeping most of one day. They gave her fluids and advised contacting ED services but at least it put my mind at rest for that day.
My DD is in day treatment now and slowly slowly WR but even now some days are too much for me. I know the NHS model is to WR first and offer therapy later but there is a school of thought in the private sector that recommends they go hand in hand. I think it is a very individual thing and can only help if the DC consents and then hopefully engages but the engagement can take months. Solidarity to all the struggling parents reading this. X

@NanFlanders your DD has come so far. I’m praying that it is just a one off and that she will start again today with renewed strength to beat this illness.

Does anyone know how long after WR they have to keep with the weight recovery 3+3 and do you gradually decrease it to a maintenance meal plan? I presume it is an individual thing but interested to know the advice people have had

@Shanghai101 Thanks. She seems to be doing okay. Eating very 'healthily' and likes to prepare her own food. She has swapped out morning and afternoon snacks for lattes and isn't always having dessert or evening snack, but she has been eating out with friends and sometimes having 'treat' food then. Mood much better and remains recovery-focussed. Engaging with Adult Services now, where she will be getting treatment for PTSD from the force-feeding. Looks on the thin side, but healthy. On the move away from 3+3, Adult Services are apparently recommending against following a meal plan as they feel it can work against the move to intuitive eating and full recovery, i.e. "I cant have this as it's not on my meal plan'. Which I guess I can see, but so strange to move overnight from "You must sit with her 6 times a day and ensure she eats". We've had much better care than a lot of the recent stories on here, which aim frankly shocked by. Hope you and DD are doing ok xxx

@Curlyhairedassasin would you mind running a new wfh for me please ?

We had another successful FBT
Although she is SH and feeling low she is still managing her meal plan and averaging around 2,500 calories a day and we've managed another weight gain 44.6 to 45.2 within 1 week

I know there are some not so good updates which I'm so sorry about however I think it's good to also update when things do go right

@Glitterfarti so sorry about your day
That sounds like what happened to us
No one wanting to help

6 times to a&e for us over 5 wks

My daughter's mental health is low but physically she is better......I just hope it catches up

160cm
August 2011
45.2

Thank you @Curlyhairedassasin

At one point DD wasn't eating and we were being told to carry on with FBT 😳

It's absolutely shocking 😮

Just keep pushing for admission
I don't think mental health can be worked on until physical health is better and in the 80's it's so low

It's so sad to think they are so stretched it has to be so low to get treatment 😩

@summertimessadness24 95.35%wfh :)