Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

@LittlePickleHead If you trust her to drink the supplements (or if teachers can supervise), I think I'd let her go. This illness robs them of so much. It might even encourage her to eat.

Hi @LittlePickleHead - my DD did her Duke of Edinburgh residential quite early in her recovery - like your DD she had only just been allowed to restart some of her activities (gymnastics). The trip went ahead with plans in place, the teacher was briefed and instructed to supervise DD's intake. We took the view of mood and food and that her mental state would benefit by going away. It went well and the teacher was in contact with us during the trip. Looking back, recovery is such a long road that two days for DD to enjoy normal we felt was worth it.

Thanks @NanFlanders and @D1ANA22 for your advice.

I think you're right that there is a lot of benefit to her going, and I'm hoping it will help her show she can be resilient without me. The school have said there will be a teacher who can sit with her in a separate room and supervise meals so that gives me confidence that she will definitely have at least the supplements.

I'll talk to her and set some expectations. She's also doing DofE expedition in June so we do have to get her to the point of being able to cope with that over the next few months as well.

The second thing I'd like advice on is belly piercings. Before I realised DD was ill I said she could get her belly button pierced on her next birthday. I'm quite laid back about piercings so if she was well I would stick to my word. However I feel uneasy with it because of some of the dysmorphic feelings she has about her body and looks in general. This hasn't specifically focussed on her stomach, but I worry if there is a reason that she wants to show her stomach it might also cause her to be more anxious about weight gain that she already is. I was thinking about trying to explain this to her and saying we can wait until she's further along recovery.

I don't know if tying it into recovery is a bad thing though?

@LittlePickleHead my dd was in the best place when eating with friends - she didn't have the same anxiety as she did around family. Will her friend question where she is if eating separately?
I've come back from an orthopaedic clinic as suffering with my joints. I got a stern telling off and MUST lose weight. Hmm no Sherlock. I restrained from losing it to explaining why all the food in our house had been high calorie and high fat until recently...

@NCTDN they are aware of DDs ED and used to her leaving school for lunch, so they will understand why she's eating separately.

However the other girls that she's not so close to don't know so this is a good point to raise with DD that she may have to field questions.

D1 i think you have to trust your dd to eat, it's pretty much impossible to supervise at college. I still make dd a (high calorie) pack lunch to take every day and I monitor by keeping an eye for any visible weight loss, any increased ED behaviours and/or any increased level of restriction at home. It's not 100% fool proof but the best I can do I suppose.

Little the school trip id support as going away with her friends may encourage her to eat more normally if she sees her friends eating. However I personally wouldn't allow D of E at this stage. Some of the physical tasks are hugely demanding and she would need a massive amount of calories to compensate. I appreciate others may take a different viewpoint but I know my dd wouldn't have increased her intake enough to allow for a 10 mile hike etc.

Unlurking as DofE has been mentioned and have been in a dilemma with dd.
Binging and purging for nearly 3 years. Discharged from camhs twice.
Weight was not an issue before but is now loosing weight and at 84%.
Since Xmas she has stopped binging but increased her purging to daily.
Gold DofE Expedition is late March. She wants to go and for her mental health would be good.
I'm inclined to let her go but told her I'm worried about her physical health causing problems (She has always been fit and silver expedition was a doddle for her but weight was fine at the time).
We need to pay by the end of this month if she goes.

@Three

Personally for me it would be a no three that's a low wfh and purging is so so dangerous physically. Is she under an ED team and being checked out medically?

Yes, under camhs but not very helpful

It's so difficult to make the decisions about DofE, school trips etc. My dd doesn't have anything coming up but if she did my immediate instinct would be to say no. But it very much depends on their stage in recovery, how independent they are with eating and obviously if they can be trusted.

My dd is very affected by any change of routine, to the point of being anxious if a meal is 30 minutes late or if it looks different to usual or someone looks at her weird or whatever, so all those issues mean it's highly likely she'll not eat enough and risk slipping back in her recovery. She's restoring weight well and had good energy levels so it's not a physical issue, but the safest place mentally for her is at home. I'd be in absolute knots if she was away from home for any period of time. However much the teachers or leaders say they'll keep an eye on them, it's just not going to be enough unless it's 1:1.

Are they monitoring her bloods and heart? The risks with purging include messing with electrolytes which can be really dangerous. To me it doesn't sound like she's well enough to do D of E... are you doing FBT? How old is she?

Sometimes I think they have to realise that having this illness does have consequences, the hope being that this will give them some motivation to get well.

It's awful though when you can see what they are missing out on.

Hello everyone, I posted a few weeks ago and wanted to update on progress as I really appreciated the good advice I was given on this thread, I wasn't able to respond as we cant leave DD alone and being on an eating disorder thread wouldn't go down well!

The ECP team wasn't as exciting as i hoped - I thought there might be support with meals - but actually we are (fingers, toes, everything crossed) managing food intake atm. The therapist we got with the ECP team is really nice and helpful so we're feeling OK with that now. As one of you said, it was like turning around the Titanic - she only gained 200g over the first month (which was when all the really frightening behaviour started) but since Jan4th she has gained 2kg. She is no longer yellow and I hope her bloods have improved too - she is still on phosphate supplements and her skin is still like the driest paper but she has pink in her cheeks at last. I tickled her this afternoon on the floor and the dog jumped on her with excitement and we had proper 10 year old squeals of giggles. We also haven't had to pull her from under the bed or hold her so she doesn't smash herself on the floor for a couple of weeks but I'm so scared even writing this will create it again, I think i have PTSD from her banging her head on the floor.

My biggest struggle is exercise - endless negotiation over how long she can walk the dog for, why is it only 15 mins of ping pong rather than 20, why can't she stand up all day? We can't leave her alone as she doesn't trust herself not to do star jumps - we were letting her feed the rabbits alone and then she admitted she was running laps of the garden. I'd seen the brushed down grass so figured something was happening so came out with her and she got very cross. But she seems to want us to know that she can't be trusted if that makes sense, ie flat-out telling us that if we leave her alone to tidy her room she will do jumps. I guess that's good? But absolutely no time for non DD stuff - I haven't exercised in weeks and my hips are killing me.

Should I stop her from standing up all day or is this a battle I don't need to worry about? The floor is ceramic - it's so hard and i worry about her joints frankly. Currently the car is a minefield as well, as she has to sit down then wants to defray that sitting time otherwise she's 'not hungry'. She says she's never really hungry but is aiming for 'I could eat' which is I guess the best we can expect for a very long time.

We also did a fear food - mashed potato - but it was VERY tearful for her and then my eldest got triggered. DD2 monitors DD1's food which is another fun challenge... still not doing well on hidden fats but the weight gain is ok... right? CAHMS seem pleased.

My mental health sucks, I was miserable and felt very trapped yesterday which meant I wasn't as empathetic as usual and shouted at her and the day went to shit, but It is so so hard having no personal space and having to be 'perfect' all the time. My wonderful DH looks shattered so I must do too. I feel like an ass for writing that and I am pulling up my big girl pants but... this is just so so fucking hard. And the people who know - friends in particular - want 'reasons' why DD is like this. I know it's magical thinking to protect themselves/their children but it really triggers me.

Sorry, stream of consciousness. Thank you all again. The current convo about how to manage recovery and 'normal' life feels so far away but so useful to read xx

@Threeyearsalready I am afraid I agree with all the others. It would be a no from me. as its Gold DoE I assume she is 18 or nearly there?
I am not so experienced with older teens, nor purging but it does not sound to me she can be away for 4 days (I think it is?) With all the walking etc. My DD did her silver practice last summer but was over 100% wfh and she was fairly good by then and trustworthy. The ED did not have such a grip
Sometimes they need reminding that having an ED is limiting. There needs to be a reason to recover.

@WhatHo well done on the weight gain. It sounds like tremendous progress.
Exercise compulsion is my area! As DD was the same as yours.
Exercise is a sort of purging. Its a deal they do with the ED which allows them to eat. It's tempting to not worry too much if weight is going on but I do think it's better to tackle these behaviours too.
So heres what helped us.
Have permitted and non permitted exercise. Add permitted exercise to the meal plan. What is permitted could be discussed with CAMHS but have say 15 min dog walk as one day. And then build some other things in. The exercise should have a purpose. Running laps of the garden is not a purpose. Dog walking does have a purpose. My dd is a footballer so we had exercise relating to that. The plan was drawn up by her coach and verified by CAMHS. We had to up her cals to allow for it. Build in total rest days ie no activity at all.
Then clamp down on all other exercise. We used permitted exercise as the carrot (and stick!) . I also distracted a lot and yes spent all day every day with her.
She still tried all the time. We withdrew her permitted exercise.
With persistence and weight gain it improved.
We didn't use this but our key worker suggested a star chart for every day broken down into 30min chunks. Earning a star for sitting/ not exercising etc for every 30 min period. This could lead to a treat she would value. (Not exercise based!).
Then do not enter into negotiations. The permitted exercise is on the plan so that is what we are doing.
Be prepared for massive kick back.
On our rest days I would wake up with a stone in my stomach.
Recently she nearly didn't complete some off season training she had been set by her club whilst we were on holiday as her embarrassment at doing it on the beach almost overcame her desire to do the training. Believe me that was a MAJOR win....

She has always been light, so I don't agree she should be aiming for 100%wfh.
She has cut down a lot in her excercising already.
I know that if I definitely say no now she will not put any effort in weight gain and go down further in the rabbit hole.
I'm waiting for further camhs input after having been discharged...but recent bloods etc are ok

But yes, 4 days with heavy rucksack....

@WhatHo it must be so tough for you but you are doing an amazing job.

As a PP has said - distraction is your best friend here. You want to make sure that time is spent doing other things and then stick to it. Hobbycraft is great for this - jigsaws, crafty activities (making your own Easter cards this year) and other safe crafting activities (obviously avoid anything with needles if that is set to be a self-harm risk). Books, tv shows, pamper sessions, school work - all bitesized things which will try to focus your DD's mind away from the ED thoughts. They might also be good for you to help your own mental health.

Hang on in there, you are doing so well.

Lego saved our sanity and Netflix.

Three unless you can use the DofE as motivation and say I need to see week on week weight gains and there is a zero tolerance on purging?

Any losses or purging is an immediate D of E ban.

It is so hard but the risks of putting her through something as gruelling as DofE potentially could be catastrophic if she's underweight and purging still.

Whatho sounds like you're doing brilliantly, keep going, I found the exercise compulsion naturally lessened as the weight went on. There's a theory that when you lose weight it triggers a primal desire to move more as in times gone by a lack of food meant travelling to find food iyswim?

I banned cardio type exercise as was directed to by Camhs but allowed a dog walk once a day, that still causes

Sorry as I was saying!

Caused stress as dd would endlessly try and extend the walks but we somehow got through it.

Definitely use distraction as much as possible.

Thank you @Lottsbiffandsmudge. Very helpful thank you but damn - I absolutely quail at the idea of removing this outlet but it sounds like it has to be done. she says she has to exercise otherwise she cant eat so I'm terrified we'll go back to hour-long battlefields at mealtimes - as opposed to the slow and reluctant but happening trudge it is now. I'll speak to CAHMS armed with your suggestions.

@Girliefriendlikespuppies That is really posirive to hear. It doesn't seem to be having an affect on her weight gain but she's so tired and fragile. I am hanging out for <95% WFH. She is 86% as of Friday.

@Havehope21 my goodness we own half of HobbyCraft. Thank god for that expensive store. And all those word games you get in the App Store. But she won't bloody watch TV or read a book as it's 'lazy'. She used to love both. There is no aspect of life which isn't tainted by the ED. Poor little soul.

Hi all,

Can anyone give me any idea of how my dd's dysmorphia and social anxiety might improve with higher weight? Is there a 'magic' weight at which she'll start to feel better about herself?

Also is it usual for their mental health to get worse before it gets better? Dd hides her face even from me now until she has her full mask of make up on. This despite her wfh being now around 90% and her eating fairly stable. She's not going to sixth form at all and pretty much doesn't leave the house unless it's for a drive where she sits in the back of the car with her hood up.

I guess I'd just like some reassurance that this dip in anxiety and confidence in herself is normal at this stage? I'm constantly on edge as the ED keeps bringing new challenges. A few months ago it was all about food but now I'm faced with her walking around the house with a towel around her head so I can't see 'How gross she is'. It's heartbreaking what this illness does to them.

She refuses counselling or any other type of help that I suggest. She barely talks to me and we pretty much only communicate via text. Poor dh doesn't even get texts, he's just been completely wiped from her life as have other family members. Camhs have nothing more to offer other than physical obs every 2 weeks as she just won't engage.

I can't ever see an end to this. I thought getting her eating and the weight going on was going to be the big 'fix' but it's just bringing new shit to the party 😞

@BagpussSaggyOldClothCat Sadly, I don't have any answers as we're nowhere near the point of my DD being recovered, & her dysmorphia regularly rears its head (generally focused on her thighs & stomach - if she thinks they look bigger she gets hugely triggered & often self-harms too)

Apologies if you've already posted about this on previous threads, but I was wondering whether she's ever had an OCD assessment? My eldest was assessed while an in-patient, & diagnosed as having severe OCD, for which she was then (& remains) medicated. Huge amounts of ED sufferers have OCD as well (often along with lots of other things as well). The medication can make a significant improvement (I know it's not the answer for every child).

Also wondering whether she's always found communicating difficult? My DD was diagnosed with Selective Mutism in September, & CAMHS are trying to structure FBT differently this time round because of that diagnosis.

@WhatHo It sounds like you're doing an amazing job so far, well done. I just wanted to delurk and say hi because your experience with your DD sounds so similar to mine. DD was 9 when we realised something was really wrong and that she'd become skin and bones - she was something like 69% wfh then and obviously very unwell. She was freezing all the time, had such dry skin and discoloured hands, was exercising compulsively (yes to laps of the house and garden!) and getting up ridiculously early to fake having breakfast before the rest of us woke up.

Getting her weight back up did take some doing - like you it took a while to turn the ship around even though she was really compliant and started eating much better straight away. Once she had some good gains, though, it became much easier. Distraction with board games and jigsaw puzzles was our thing to help with breaking the exercise habit. It all took time, but the anxious and compulsive behaviours did disappear as she recovered.

She's coming up for 11 now and so, so, so much better. In hindsight I can see how much her personality changed when she was ill, and she has fully come back to us with all her sense of humour and enthusiasm for things that went missing during that time. She eats really well now, and enjoys food again.

It all feels like a bit of a horrible nightmare now, one that she's pretty much forgotten about. Obviously I've still always got it in the back of my head, and we've still got her entire teenage years ahead of us yet, but everything is good right now. Just wanted to share a bit of a hopeful story with you as there isn't really a lot of info out there about pre-teen anorexia.