Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

@Girliefriendlikespuppies yes we were definitely at the coal face together! So pleased your DD is also in a better place. Much love.
Kept going everyone..it is possible.

@Shedqueen thats a really positive step for dd. Such a milestone when they are not merely surviving but making steps towards navigating their futures

Does anyone else find helping their child to gain weight exhausting? I work and work at it and then weight that took months to gain is lost within days of not eating enough. I think DS is exhausted by it all too, he said he’s fed up of eating and just can’t face it anymore.

Apologies for the rant - just feeling sorry for myself!

Hi all,
I hope no one minds me joining here. I found this thread thanks to a thread I posted a while back on another board about not judging people for feeding their children UPF.
My daughter is currently in an intensive day treatment program for anorexia after it became clear community care at CAMHS was not sufficient. We have been struggling for nearly 3 with her but CAMHS only gave her a diagnosis at the end of last year. She is now on her ‘last chance’ on the intensive treatment program as she has not been restoring weight and many other reasons. Terrified she/we can’t do this and she’s going to end up in impatient (which is definitely the next step). We also have two younger children and the impact on them is horrific. I honestly am at my wits end.

I’m so sorry. It’s so difficult. It just feels incredibly relentless and there is literally no joy in food any more- it’s just a drug at this point to get them well. Except unlike a tablet that’s pre measured and reliable, it’s a minefield of portions, negotiations etc. I really feel for you. Sending solidarity.

@SmokeyPink it is utterly exhausting especially how quickly hard won gains can be lost. The only thing I can say is to try not to look at weights in isolation but look at an overall trend so some weeks things might go up or down but looking over a number of months it is the overall trend that matters. I would also say that even when things seem like they are taking a backward step don’t lose heart as our kids have learnt skills that help them to get back on track.
If, like us, you have been on this journey for a number of years then you need to be particularly mindful of your own mental health and find time to do things just for yourself-easier said than done I know and not possible when they are medically unsafe.

We were in a similar situation with many threats of inpatient stays. Each time she did enough to just stay out of hospital. It was exhausting. But her progress has been steady and after a year of day treatment she moved to outpatients and continues to make slow progress. Sometimes I think an inpatient stay might had sped up the journey 🤷‍♀️

I haven’t been on for a while as my MH has been really low. But FINALLY after two years of this, DD has a diagnosis of AN. ED clinic are being a bit vague about what happens next, any advice?

@Glitterfarti Hopefully they should have a plan of treatment in place. Usually they will start what family-based treatment with medical monitoring. So you will have a meal plan that you/your partner is expected to supervise consisting of 3 meals and 3 snacks a day. I don't recall how old your DD is - if under 16 you need to apply for Disability Living Allowance, if over 16, then Pip: emphasise how long it takes to you to supervise each meal. Glad you have your diagnosis - hopefully you can finally get some support.

Hi all - sorry I disappeared for a while. DD had about 3 weeks of relatively 'normal' eating, and our local CAMHS ED service was ready to discharge us. I thought it was a bit quick to be sure things were okay, but trusted the professionals. Then about 4 weeks ago DD started restricting again, and has been on 700-800 calories a day since then. The ED service decided not to discharge her, but we're getting very patchy support, and have no diagnosis. She's seeing a Case Worker fortnightly, but they just seem to have a chat. She's medically stable apparently, and not underweight, but she's eating so little I really don't understand how. She's tired, has no energy to do anything, can't manage a short walk, and feels cold, even in this heat! I'm still signed off work as can't leave her along due to self-harm risk and the fact she won't eat at all. School doesn't seem to be an option due to crippling anxiety, alongside all the other issues. ED service are 're-assessing' on 23 July to see if she meets criteria for AN or OSFED this time. It's all so exhausting and demoralising. We've found a private Psychologist, and have booked in a private autism assessment, as there are lots of co-existing things going on, including likely OCD. Is there anything else we should be doing? I feel so helpless!

@PermanentlyExhaustedPigeon80 keep going, you’re doing everything right! As demoralising as it is, you’re doing everything you can - it’s taken us two years to get a diagnosis and what swung it in the end was a video (BBC Teach - Anorexia, Kirsty’s Story, you can find it on YouTube) that she could relate to. You have to trust your instincts and you’re the person that knows your child best x

How is everyone getting on?

We are again riding the AN rollercoaster. Another overdose a couple of weeks ago but physically fine now. Just needed an overnight drip. Scale in hospital showed 2kg less than the previous ED clinic weight. She is refusing weight checks at the ED clinic so who knows. I feels she is cutting back and she definitely looks thinner again but she is still eating my enriched home cooked meals so who knows. Just sick and tired after almost 3 years of that crap and no real improvement. She is still enjoying school though. Plan is to start full time in September. DD is really excited about but if cause of her weight drops off, it's not going to happen. ASD assessment is later this month too so will see what this team makes of her.

Sorry to read your update @Curlyhairedassasin, some days I wonder how everyone is still standing let alone doing what needs to be done for their sick child, other children, partners, families, pets and work!

We’ve found scales differ so wildly there is no point taking readings on more than one - our GP/ED clinic/a&e/local outpatients all give different readings which isn’t helpful for anyone.

Good she’s eating at home and you have something for her to look forward to that you can hopefully motivate her with. Chin up and all that shiz…

We just went privately for Autism screening for our other child, got the second part of that this week along with B12 and our first FBT for DD2. Since diagnosis a week ago she’s really flat and eating has got worse, and I lack the energy to push any more, which makes me feel even more of a failure.

Thanks @Glitterfarti and sorry to read that things are more difficult again.

I sort of hope the weight difference is largely down to different scales. Hopefully starting KS4 and GCSEs will be enough to keep her going.

Hello everyone- things not improving here either unfortunately. Dd refused to speak to the ED team when they came to our house and refused to see them where they are so it’s back to me meeting them on my own/with dh.
we both have 2 weeks off work so we were naively trying to get things back on track which is not happening either.
she is taking breakfast/lunch upstairs to eat but in reality is taking a few bites and throwing away most of it. I’ve told her today I know she is doing that and I want her to eat downstairs- to which I was told I’m making her feel uncomfortable etc and she would rather kill herself- likewise me very gently telling her I was really worried and that I was afraid if she didn’t watch she would have to go to hospital- which she told me she would also kill herself if that happened.
I’ve removed obvious razors/scissors etc from bathroom but am concerned she is/will self-harm (again).
I’ve spoken to ED team about how to get her to hospital if it comes to it and I would have to involve police if she is (in a state to) refuses. She finally got her period yesterday though it was late by almost 2 weeks which is unusual for her and I’m anxious it’s because she’s losing weight.
Im being blamed for everything- I know she’s lashing out/deflecting - it’s still very hard!
She’s shut herself in her room now - I just want to know she’s safe but can’t do that without barging through the door which would distress her - it’s a nightmare atm honestly.

Sorry to hear others are struggling too - it's so hard isn't it? @Spendthrifting we're also bouncing between calorie restriction and self harm, so I really empathise. The treatment for ED seems to be to push the eating hard, but you then have to balance that with other risks, including a refusal to eat anything at all - which I think is another form of self-harm. DD has been on 700-800 calories a day for about 4 weeks now, and is trying to reduce further. She's exhausted, tearful, cold, shaky, dizzy, and can't do anything. No school, no social life. She's still a 'healthy BMI' (just) but has lost 3kg in 2 weeks.CAMHS ED team reviewing her again for a diagnosis on 23 July, but I don't know what we're supposed to do in the meantime when she's getting worse every day. No appointments before that date as her Case Worker is on holiday! It's a joke.

@PermanentlyExhaustedPigeon80 if she is eating so little and it cold and dizzy, I would pack her off to a&e. DD was admitted 2 years ago after eating 700-800 cals for a few weeks, her heart rate was slow (35 BPM), her body temp was low, ECG abnormal, bloods abnormal. She was so ill, she needed to go to the HDU (but was screaming and shouting and kicking off at home just before admission - you wouldn't have guessed how ill she was just by looking at her). BMI doesn't really mean anything in that situation so don't think you cannot seek urgent medical help.

@PermanentlyExhaustedPigeon80 the speed of weight loss is very relevant in this case. I too would be taking her to A&E if you cannot see an ED specialist.
Things are tough for us too at the moment. Trying to prevent relapse by going back to mostly safe foods. It’s soul destroying!

@PermanentlyExhaustedPigeon80 the severe restriction will at some point cause electrolyte changes in the blood. If these are out of kilter, if can affect the heart rhythm and it can get very quickly very dangerous if untreated hence the need for ECG and bloods (i.e. check for electrolyte levels in the blood). Normal BMI does not really mean much in this scenario. a&e can (and should) do these tests for you. We have been there a few times.

Really sorry @Shanghai101 that things are getting more difficult at your end too.

Thanks @Shanghai101 and @Curlyhairedassasin - my instinct is that she needs urgent medical help. Tonight she's been quite woozy, and had to grab onto a door frame at one point to stay upright. She's also told me she's now aiming for 650 calories, as 750 was starting to feel too normal and she felt she needed to try harder. I took her to the GP today, who was sympathetic but didn't seem to be able to do anything. He checked her BP and HR, and said they seemed okay. Not helpful really, as DD took this to mean she could carry on restricting without causing any serious damage to herself. I'm going to have one last go at getting her some help through CAMHS tomorrow, and if no response we might need to go down the A&E route. I can't believe how hard it is to get help. It feels like we just have to wait for her to get worse. Last week her Case Worker told us what to do 'in an emergency' while she's on leave, and I said 'this is an emergency already'. I don't know what has to happen to convince them she's at risk, but we're already past the point I feel we can keep her safe at home. Has anyone had any luck getting SSRIs or anti-psychotics prescribed? We've been advised by private specialists these would help quieten the 'food noise' in DDs head enough to engage with therapy, but finding a Paediatric Psychiatrist via the NHS willing to see her / prescribe feels close to impossible.

Hi all, just been catching up with about a month's posts. I can't believe it's been 10 weeks since diagnosis. We had 4 weeks of intensive outreach team - thought we were on top of everything and DD is a lot more stable, 3 meals and 3 snacks every day but she will do what she can to minimise and so she's only 1.5kg up on 10 weeks ago. So now need to increase portions and snack sizes. Any suggestions would be great. First lunch away from my supervision tomorrow at sports day. She's been back in school for 2 half days so far just for her mental health. She's been under 80% WFH for so long now they are talking about all the long term problems.
Sorry to hear about all the problems that everyone is having.

@PermanentlyExhaustedPigeon80this really sounds like she needs checking. I know that CAMHs for us did everything possible to keep us away from hospital which turned out to be ok for us but was very scary at the time and I still look back now thinking we should have gone.

@PermanentlyExhaustedPigeon80 is you DD under ED team or just CAMHS? If she’s stumbling/fainting I think you should take her to a&e, even if it’s just to ‘log’ episodes. It takes so long for services to recognise you need help that sometimes you need to make a nuisance of yourself to advocate for your child. If she’s woozy her BP will be low and she must feel terrible, she might need some fluids x

@PermanentlyExhaustedPigeon80 ED psychiatrists are reluctant to prescribe SSRIs under a certain WfH as the brain isn't producing enough serotonin for them to work. They will often prescribe an anti-psychotic called olanzapine which has a sedative effect in small doses - if your DD is willing to take them (ours just pretended to take them then spat out later, so do watch for that). When at a higher weight my DD did find sertraline to be a game changer - not in terms of quieting the food noise, but in terms of treating her underlying depression which I think was a large contributory factor (along with undiagnosed autism) to developing AN. One word of warning - fluoxetine (prozac) massively increased her compulsion to self-harm - which is a reasonably common side effect in adolescents. Btw, I agree with @Girliefriendlikespuppies about a trip to A&E if she is fainting or woozy - it's shocking how hard it is to get help.

@PermanentlyExhaustedPigeon80
dd was already with CAMHS and was referred to the ED team when she started seriously restricting and had rapidly lost quite a lot of weight - but her bmi was still okish. She’s taking sertraline now which might be helping her anxiety but isn’t doing much for the food issue.
i can’t get her to go to gp etc but the ED team have been very clear an ambulance is needed (to take her to ER) if she doesn’t eat for 36 hours or if she gets dizzy or has chest pains.