Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

Yes all told it was two years, I guess, though from diagnosis to the greenshoots of recovery was more like 17 months - the point at which I felt that she was going to get better even though she wasn't yet there.

DD wasn't forbidden to see friends but she was under a strict energy output curfew so they said she couldn't go shopping with them for example, which is what they liked to do. The football was completely prohibited but she has never exercised in a compulsive way so we let her.

When your child is diagnosed you feel such a failure as a parent, especially if you feel that you should have done something about it sooner (which one invariably does). But it's still the case that you know your child better than anyone else so I do think it's worth trusting your instinct sometimes. We did things differently from many on this board - didn't prioritise weight gain, only tried to hide calories once and failed so were transparent, didn't add lots of additional fat, let her exercise, never aimed for 100% WFH. Which is not to say we're right, far from it, but just to say that although all anorexics have lots in common, they're all individuals.

@Valleyofthedollymix thank you for sharing your journey. So happy you are coming out the other end...we deserve medals!
Your last sentence feels so key. We can't or I certainly can't 'fix' our children sadly so a rigid action plan alone won't add up to recovery. Really understanding their particular fears, triggers and strengths in beating the disease is probably something a parent can do best. Of course it's important to have a strong framework to work within but I am trying not to get so stressed when I veer a bit off course and feel I have done the 'wrong thing'. This illness is the antithesis of linear and what works to support DD shifts around constantly. It's been a huge lesson in letting go of my formulaic thinking and just trying to hold hope our DD will get there eventually

Yes exactly @ReineDeSaba , you've put it so well.

This board was 99% a positive, supportive thing for me but sometimes I'd feel out of kilter with others and a failure as there would be posts saying 'only a 500g weight gain this week, gutted' or posting recipes for 1000 calorie snacks and we could only dream of that sort of progress. What I should have felt was really pleased for them that they were finding their way through and that we neeeded to find ours, which in the end was different.

The stress thing is as you say key. I used to get myself in such a state for a missed snack but sometimes you've got to let it go.

@Valleyofthedollymix thank you so much for posting. I have to admit your post made me shed a few tears, I think I've got so consumed in the day to day that I forgot we are aiming for recovery. That sounds stupid but it can feel so relentless can't it.

Also, I realised I'd been hanging onto a sense that there is only one right way to recover. That's because of my own need to follow the 'right rules' - it's hardly surprising my dd has inherited some of these traits from me 😂 thanks for reminding me that everyone is an individual. And, the amazing thing about these threads is the support we give each other. X

@Valleyofthedollymix I followed your journey through the threads as our DD had just been diagnosed in '21. Your post came at the right time for me - I am logical and stuck at the three meals three snacks although DD was discharged in January '23 and largely eats OK independently and I probably need to detach from the 3 plus 3 now. The eating habits that I do need to tackle are her leaving some food on the plate; she has a very sweet tooth and will eat a dessert completely but for her main she will leave potato on her plate and she has fizzy drinks - albeit probably no more than any teenager.

I am struggling to step back. DD is the same age as yours, what are your plans to prepare them if they want to live away after college? Should I start her preparing evening meals for the family, we still tightly 'control' her food and DH and I prepare a family evening meal every day. I think @Lottsbiffandsmudge and @Girliefriendlikespuppies DD are the similar age as well, what are thoughts about going away to Uni?

And @greydoor you also shed some light on my own thoughts that there is no set way to recover - and probably my own frustrations that whilst we manage FBT, there is discretion in how we parents take control and I like to follow rules, it does feel like we are making it up as we go along so I doubt myself.

@Valleyofthedollymix your posts are giving me lots to think about and have been very uplifting, thanks! I've got a question - you've said quite a few things you didn't prioritize, can I ask what did you prioritize? I've been focusing on trying to maintain some kind of positive relationship with DD, not sure how successful this is 😬 We are very fixed on weights, I think it's a very clear measure of when the ED is taking over. But I also think it fuels a very horrible dynamic between us all as a family. I would love to think of different mindset, a less traumatic one!

I'm just very interested in thinking about different people's experiences, trying desperately to extrapolate something that might feel helpful to me.

Aww it's reminding me what a lovely supportive place this board was. Honestly I got more useful stuff here than anywhere else. @Lottsbiffandsmudge and @Girliefriendlikespuppies were so amazing.

@greydoor it's so logical to seek out rules and I think in the absence of anything else they're a great place to start. But it's I also think that once we absorb them we can bring our own experiences and knowledge of our children to adapt them. It was endlessly frustrating to me that the medical profession bang on about 100% WFH when it seems glaringly evident to me that some might need to be more than that and others less. I mean why would bang on average be an answer to anything.

@Nomoreplease23 god knows re. moving on. She's year 12 so we've got a while to go yet. We used to make grim jokes about our local (as in 1km) university and how we'd be stood outside lectures with a protein bar for a midmorning snack. We are in London so there's plenty of options should she need to go local but I'm working on the assumption that this won't be the case as you might as well tend towards optimism. Our son is at university about as far as it is possible to be in the UK and I think I'd steer DD away from being more than two or three hours away. What are you thinking?

@Eyelashesoffire I don't agree with everything in Hadley Freeman's memoir (it's quite a narrow definition of anorexia) but I really agree with everything she says about keeping the other world alive. She suggests keeping the experiences of siblings centred, trying to go on holiday, talking about what friends are doing. We went on a couple of holidays that were pretty grim for us as parents but in retrospect it was right not to allow the world to stop. And remarkably her siblings had a good time despite the miseries we were going through.

Hadley also says, rather blithely, that the parent (usually the mother) can't become the caregiver. That's impossible with FBT. However, I guess we can try to centre our other worlds and display them too. My work really suffered, but anything I did manage to do workwise, I'd make sure I was vocal about to her (without blaming her for how scant it was). I play a sport and I kept it up, when possible. I'd show interest in terrible tiktok videos and then watch some terrible reality shows with her just so we'd have other things to talk about. I tried to find silly in-jokes for us to have.

(while also ranting, losing my rag, screaming at her and generally being an absolutely terrible person a lot of the time because, f me, it's hard not to)

Sorry another thing to add to my essay. Now that we are (at least for the moment) through it, I'm so much closer to DD than I am to her siblings. It was bloody horrible but it's bonding and we really know each other.

DD is year 13. Planning on uni but also limiting to max 3 hours away.
We were given some information about uni and ED. Some are from freedfromed; preparing for university. Also New Maudsley capsule .

Aww valley lovely to hear things are still going well with your dd, sorry to hear you have stresses with your parents though. I seem to remember your dd started taking antidepressants which I think helped her move towards recovery? Sorry if I got that wrong, is she still taking them?

I agree with taking an individualised approach, I certainly did (still do!) with dd. Partly because as a single parent I just haven't got the energy to fight the battle relentlessly and partly because intuitively I felt dd would respond better to a balanced approach ie some boundaries but allowing some behaviours to help her anxiety.

It's such a hard journey, easily the hardest thing I've ever had to do was turning dd around.

Dd has said she wants to take a year out which tbh is a relief, once she gets through college I think she wants to get a job and have some breathing space before deciding what's next.

We've had a tricky week here as she broke up with her boyfriend, I think the week away together pushed the relationship a little too far and dd wanted a break from him when she got back. It all got a bit messy and stressful and I noticed tonight she's self harmed which is the first time in months.

😕

@valley I think our shift now DD not at dangerous weight to other life has been so important. We are finally at a stage when although eating independently is a work in progress we can enjoy the tears and anxieties around the more usual teenage stuff of parties and friendships. I try v hard to let go of expectations as inevitably the highs of the journey never stay that way but helpfully the absolute worst loss also shift...but of course it's hard not to get caught up in thinking how it is right now is how it will always be

@Girliefriendlikespuppies I hope the self harm post break up is just in a blip in this big turnaround you have managed for your DD. That's such a tough gig handling it all solo

@Girliefriendlikespuppies I agree with you that if you are a single parent, you can't fight it all like a battle, you'd crack and also they need nurturing as well and it's hard to combine both being the tough parent and the nurturing parent all in one! I have a friend who is on her own with two other kids and her dd with an ED and it's very very hard for her as she can't implement a lot of the things at home with two younger siblings to care for, plus her daughter is ageing out of child services as well (mine has, but has adult services support too which I'm very pleased to have been offered as we are a little up and down on our recovery journey).

@Girliefriendlikespuppies I also wanted to say, I've found there are ups and downs and it sounds like your dd has had one today, but it's also the case that tomorrow you can get up with a better idea between you of what will work for her and help her cope better and quicker even if she stumbles a bit. It is sooo hard though, and it can feel a little endless.

Aw I'm so sorry to hear that Girlie. In a way, it's a great sign that she was open enough to have a boyfriend as I think eating disorders can close you off from people. DD is straight, as far as I know, but gosh I can't imagine her having a boyfriend. She's so shy and awkward.

Yes you're right, she was on Sertraline. She came onto a tiny dose and then stopped the day her GSCEs finished. It was fine, I didn't notice any side effects. I've no idea whether they were helpful or not. You throw so much at them in a bid for recovery that it's hard to know what worked.

I had a friend at college who was severely anorexic and she started to recover on sertraline so I imagine for some teens it is helpful in getting them over the initial bump and into recovery. I still don't know if I should have taken the offer of antidepressants for dd it's so hard to know 😕

Nan I really feel for you, you're in such a difficult situation. I think I'd want the wfh up a bit as well though before considering discharge especially if she's loosing with home leave.

I'm feeling a bit fed up here as dd seems to be struggling again, it's all just a bit relentless.

@Girliefriendlikespuppies Sertraline is not a holy grail. DD is on it and I am not sure if it is making much difference. We are also on olanzapine which in the early stages was really key for us.... we haven't started weaning her off that yet.

Any tips on how to get them to eat when they refuse? The plan upped again on Friday and they've thrown in some fear foods as apparently we are delaying the inevitable because he needs to face them sometime, hoping he starts gaining and providing the ecg is ok he can stay home. The screaming has returned, food mashed up and thrown across the room. Both times he has eventually eaten it with us just talking to him, it has taken an hour and he's back to saying he'd rather die. I just can't keep doing this, I can't bare to face this all again day after day.

Hello , not been on here in a long time but don’t know where else to turn. dd anxiety is getting absolutely out of hand. Is this normal for Ed or is it something else? She wasn’t like this before , therapist think it’s all part of the Ed. She is having meltdowns regularly over the silliness things like losing her hairbrush. Nearly came home from holiday after one evening as she was so distressed. She hid herself in the cupboard. If we don’t address her issue straight away she can’t settle she will hit her head , stamp, it’s like she’s a toddler. It’s so stressful to live with. She was stressing about something else and was banging on the door when I was in the shower saying mum mum mum over and over. This eve stressing about her school jumper not being dry told her it will be by the morning I’ve made her lunch everything all sorted but she was agitated in her bed thrashing around as the jumper wasn’t dry and ready then and there. (Being on holiday hadnt had time to wash it before we went) I try to avoid these issues by being prepared but there are times when we run out of things and end up rushing out at 10pm because we know she won’t cope with it in the morning. I told her tonight to write things down and then it is out of her head and write down what I told her I was going to do to fix it otherwise she will ask me twenty times the Same question. I did lose it the other day and said don’t you trust me I am your mother I am trying, I feel like a shit mother when you constantly question me. I felt really awful after this outburst and I was really upset and she said sorry to me I said it’s not your fault I should never have said that I know you are struggling I should be more understanding. We hugged and had a chat and I felt it was better. But then next day we are back to the same stressing over everything and it’s not a nice environment. I dred going home from work as I wonder what’s going to happen what she’s going to have a meltdown over and walking on egg shells. I worry about her it must be awful for her to live like this constantly worry about everything. I don’t know what to do to stop her feeling this way. I bought her a book about anorexia that has activities in it. We need to add another snack tomorrow eve and that’s going to be hell I don’t know if I have the energy.

@Whippetlovely DD has awful anxiety. I think it is part of her ED. We are on Sertraline which seems to help a somewhat (she is also on Olanzapine so difficult to say which medication does what). But overall, her anxiety seems to have eased off a bit after going on Sertraline. if her anxiety is getting in the way so much, maybe this is something to discuss with the team?

@Proseccoismyfriend I am sorry things are so hard at your end again. I would take huge heart from the fact that he ate in the end. Can you take turns with DH in the food battles?

I have to admit we are not good with the fear foods. She eats her plan which is same-ish and it allows her to very slowly build up weight. We are just over 90%wfh. The battles really wear me out. We recently managed to introduce butter (in small quantities) and that was such such a fight. The crying, screaming, hitting, and yes, the 'i'd rather be dead' too. I have AN battle fatigue. I just do now what I can do and take on battles when I feel strong enough now that DD's weight is not that low anymore. DD1 has complex needs too which is just all getting too much at times. The general advice seems to be taking the bull by it's horns but I can only do what I can do. But if I remember, your DS's WFH is rather low?

Yes he's sitting at about 76wfh so we need to increase asap. The team are pushing so hard to try and keep him home, they came out everyday last week to help with lunch which wasn't an issue so I think I need some evening help. Husband tries but seems to make it worse more gets thrown when he's there and his patience is wearing thin. I'm not perfect by any means but he sometimes adds to the situation. I've just lost all fight, my daughter has severe eczema and needs bandages at night and his supper is dragging into that time so bedtime was late and I just give up.

@Proseccoismyfriend have you tried distractions at meal times? I am sure you have but TV really helped my DD. Some find games, puzzles music helpful. Anything to distract from the terrorist in his head.
Is he on any meds? He sounds like it would be worth asking. Olanzpaine really helped take the very raw edges off my DDs ED voice when she was at her worst. Maybe have that conversation. It is so hard and endless patience is hard to find. Lots of 'I am sorry this is so hard for you, please take a bite' on repeat.
@Whippetlovely sadly this level of anxiety is pretty standard with ED. My DDs OCD went out of control. It has all resolved with weight. Again medication may be worth looking at. You really can't be trying to make her life perfect as you will exhaust yourself. My eldest has anxiety (not ED related) and things that helped me with the circular arguments is to stop the reassurance cycle. Reassuring ends up making matters worse. So I would reassure once 'yes the jumper will be dry by tomorow' the second time she asks I would say ' this is the 2nd time I have told you, the jumper will be dry tomorrow, I don't need to let you know that again' and then future times I would say 'we are not discussing this anymore, let's do/ talk about/ watch xyz instead'.
It does help, eventually!

Prosecco* and whippet* managing their distress is exhausting but an important part of getting them to realise that their feelings are manageable. The calmer and more relaxed you can stay the better, even if you don't feel it!

I am telling you this although at the times when dd was head banging and scratching herself in front of me I was not v zen like at all. I wish I had understood more about distress tolerance and just kept pushing through rather than backing down which is what I inevitably did.

Anxiety can't kill you, whereas anorexia can. Anxiety feels horrible, you feel like you want to die/are dying but it's actually a natural hormone (adrenaline) which will eventually wear off.

Prosecco the fact he ate is a massive win. Do not give up, take a breath and keep going. Keep pushing and adding fats, the quicker you get the weight on the quicker you're out of this hell hole.

Whippet I would not try and reason with someone who is being irrational, it's impossible. Do not tip toe around her because this confirms to your dd that anxiety is something to avoid and be afraid of when it's not. It feels horrible but is harmless. I agree with lots that distractions will help, use whatever distractions work. Lots of telly, easy to watch Tv shows, games, crafts, talking absolute nonsense if you have to but keeping her mind off whatever is stressing her out.

Eva Musby has some good advice on what to do when walking on egg shells.

Thank you all. I've had a lovely dog walk and my head feels a bit clearer. Breakfast was a win. We've tried tv and the added noise seems to make him worse, never used to. He also can't make any decision as simple as what book to read, or what game to play is that part of the Ed? He needs constant entertainment and even if you start playing a game he struggles to join in or continue. The change in him is awful. He loves Lego so I've got a set coming I was hoping the building after meals would help