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

What will a&e do? Waiting times here are very long. We had to attend recently after an accident and it was hell with my other child. They just don't cope with hours if waiting. we discharged ourself early as we didn't manage more than 4h (I don't have anyone to leave them with and DH is often traveling for work so not around).

thats a lot to cope with curly. Yes, violence is often part of the illness although in our case the violence was directed almost entirely onto herself. Has anyone in your team done anything like a "keep me safe" plan with your Dd?

no no suggestion for the violence only a remark that I seem prepared to 'accept' it. But I have no idea what I should do. I do not fight back as I am worried I will hurt her. I just let her batter me and protect me as much as possible from the onslaught of kicks and punches.

How much has she eaten in the last 48 hours? If its under 500 kcals a day she needs to be seen by a medical practioner to make sure she is physically not in immediate danger. Observations can deteriorate quickly.
To be blunt you need to treat this as an emergency. Get your husband home to watch your son. And sit in A&E as long as it takes. There are guidelines they should follow. Explain about the violence. It may trigger a psych review. I'll try to find the guidelines as its worth printing them off and taking them in.
Then going forwards You need more help here from services. There is another child involved with complex needs. If you are working full time as well you are going to burn out.
The violence is not unusual but sounds extreme. Especially if it is every time you try to get her to eat.
She sounds like a danger to you and I would insist on an emergency meeting with CAMHS as a minimum. has she seen a psychiatrist? You mentioned sertraline so assume she has? I would push for olanzpaine. It has the added bonus of making them sleepy at least to start with which may calm her down enough to get food in.

I agree about a&e. She needs to know how serious this is.
I get the thing with you and your dh. We were very close to splitting up over DDs illness. The thing that stopped is was the dd would have blamed herself and the spiral would have continued for longer.

Curly there's a checklist list a&e should complete which includes physical health observations and a psych review. When did you dd last have bloods and her physical obs checked?

You definitely need more support. Do you have a social worker? I think I'd request one, I honestly can't see how you're going to be able to devote yourself for caring 24/7 to two children. Can your dh take some time off work?

You can restrain your dd to keep her from hurting you or herself but as I said before I'd speak to the police as the violence is not okay and it will flag up you're struggling.

just to answer a few questions.

cahms is not involved. referral rejected

We had general obs (heart rate and blood pressure done a couple of months ago, never had bloods done).

No social worker. tried but we do not meet the local threshold for help.

I do not work full time but only 4-5h per day. DH not willing to reduce the working hours. It's all my problem (we are not a great team).

I have another appointment tomorrow. things only escalated in the last 1-2 weeks so have made a list of things you mentioned and will ask about a number of things.

Thanks everyone. It's the first time I am talking to people who understand. Glad I found this group..

DDs bloods were the biggest cause for concern. We'd gone away for the weekend - she was doing really well- when I got a phone call saying we needed to get to the hospital for more tests. I managed to placate them by saying we were right by one of the biggest hospitals in the country and we went the next day for tests.
But getting bloods done will show a lot of things that otherwise could stay hidden.

@Curlyhairedassasin so is she under an ED team? That's who I meant really. Good you are seeing them tomorrow. Please insist on better observation monitoring. She should probably be seen weekly or 2 weekly for obs.
How much has she eaten in last few days?
Re your DH- does he understand the seriousness of the situation? If she had cancer would he refuse to helpm Sometimes the secondary carer needs to be properly made aware of the dangers involved. My DH was in denial for a while until out key worker spelt it out to him.
AN is the most dangerous of all 'mental' disorders and the most likely to lead to loss of life. He needs to understand this and at the very least back you.
Is your DD at school?. I would be pulling her out if she is.
She is seriously unwell.

@Lottsbiffandsmudge Yes we are under the ED clinic. Not sure DH fully understands it... not the way I do. I am absolutely terrified for her and he is rather relaxed.

She is still at school but we already had a tentative discussion to remove her so that may be the next step.

She is managing around 800 calories a day I recon. somewhere in that ballpark.

Curly I know support varies so much around the country, we were never even given the option of camhs.
Where in the country are you?

Curly in some areas you can self refer your child to the ED Camhs service, normal Camhs will be no use to you. Who offered your dd the sertraline if not the ED service?

Insist on bloods, ED can massively mess up the electrolytes which can be fatal (low potassium for example). Is your dd going to school? If she isn't eating she should be at home on sofa/bed rest. No sport at all as her heart may already be struggling.

Fwiw my dd was seriously ill at 90% wfh, her heart rate was in her boots, low bp, dizziness, cold all the time etc. I was in denial about all this until it was spelt out to me how dangerously ill she was 😕

Get yourself a copy of the Eva Musby book, its brilliant esp for younger kids like your dd.

My other thought is have you had a really good look through your dds phone? Take away any social media, check for any fitness/calorie counting type apps and delete them, put restrictions on the phone for anything like calorie counting or ways to lose weight etc.

How much has your dd eaten over the last 48 hours? Less than 500 cals a day requires urgent medical attention.

Can you get signed off work for a while? It's absolutely impossible to care for a child in the early stages of FBT and work imo, it requires all your strength and time 24/7.

Sorry cross posted, I'm really surprised that the ED service haven't arranged bloods that's lax of them - I'd insist they are done asap likewise an ecg.

Point out to your dh that EDs have the highest mortality rate to any mental health condition, it's a life threatening condition. If your dd had been diagnosed with leukaemia would he be relaxed? The mortality rates are very similar.

800 cals a day is not enough to be going to school on, it's just about enough to keep her vital organs ticking over but absolutely no additional energy should be being used. Her body will be taking energy reserves from her brain every day at that level of restriction which will have a knock on effect on her behaviour and anxiety.

The brain takes a massive hit in calorie deficit situations and can lose a huge amount of matter in a frighteningly quick period of time.

Curlyhairedassasin. I'm so sorry you've got so much going on with your other dc as well. It sounds extremely difficult.

My dh took a good few weeks to really understand the severity of the illness. Neither of us knew much about ED but I was straight onto Google and reading everything I could, whilst he was massively in denial. I was really resentful that I was doing everything and it was a really difficult time. I sent him lots of links to videos and articles so he could learn in his own time. ED is sneaky and will attempt to push parents apart so being able to talk and be on the same page is really vital.

The violence sounds really hard and I definitely would call the police for help. It's not something you should have to put up with.

I really feel for you all. It's extremely difficult and frightening in the early days and it feels like you'll never beat the ED but recovery is possible and FBT is proven to work. It's not a quick process and there are many ups and downs
You learn a lot as you go along so when the bad days come along you feel more equipped to cope with them. I promise it won't always feel this bad.

@NanFlanders it's your dd in the tier 4 unit isn't it? How is she doing?

Sometimes you need to spell it out to the ED unit as well. They did not initially recognise how bad DC was.

We have been told that we have to pull out DD from school. she may also need admission if things do not pick up but on an community based approach where I will be expected to be in hospital during all mealtimes to provide feeding support.

How do you do this practically? I cannot do my job fully remote but cannot afford to give it up, I have a another DC with complex needs who cannot be left unsupervised at all and is only away from me during school hours. I cannot be in 2 places at the same time. I just have no idea how to do this at all. DH's job cannot be done remotely and he is the main bread winner so not much scope here for maneuver.

What did they say when you told them this?
I wasn't allowed to be with dd for mealtimes in hospital.

They know our situation but I assume they just expect we make arrangements with work or so to facilitate this (I guess, we haven't actually discussed it). But I cannot be in hospital and care for my other child. Guess I will cross that bridge when we get there. I just find it all so overwhelming.

@NCTDN Thanks for asking. The Unit seem really good - they keep us informed, and provide activities, therapy and education, as well as a parental support group - but the poor kid is really struggling. She is having fewer NG feeds (she has an absolute terror of them and always has to be restrained - she ended up having to have one in the corridor behind a screen as they couldn't move her to the treatment room as they thought she'd hurt herself - she was struggling so much.) She's reacted to the increased compliance with food/supplements by severely restricting fluids though, so they've had to remove her twice weekly walks - which she did really look forward to. Not gaining weight - but not enough in deficit that they'll do an NG. Won't take any meds, and won't engage with therapy or education. Half the time when we visit, she asks us to leave. Two positives: her friend who went to the same unit, and is in strong recovery, is travelling a long way to visit her tomorrow, and she has done DD more good than anything else with her support and encouragement; a friend from school has got her a ticket to THE Coldplay concert and her consultant says she can go, if she will eat a meal and a snack supervised by me in the week beforehand. She's making plans to choose the safest snacks and meals (and insisting I eat the same), so I'm hoping she will do it, and the concert will show her there's some teenage life out there worth recovering for.

Oh wow huge incentives! I've got really tearful reading your post as there's so much mixed emotion in there. Makes me realise how lucky we are to have got through it relatively unscathed. Big virtual hugs to you and your dd.

@NCTDN Thanks lovely! It's always good to hear stories like yours - gives me hope ❤

Curly have you checked out what benefits you can apply for for your dd (? DLA)and if you did have to give up work (universal credit?) I know it's not ideal but you're really going to struggle to keep working and care for your dd. Can you take sick leave? I took two extended periods of sick leave and I know some parents take up to a year off...

I'm sorry it's a terrible situation to be in.

Nan I'm glad the unit is good and I really hope your dd turns a corner soon.

I took dd to ZaZa Bizarre tonight 🙈 talk about exposure therapy!! She actually coped really well, she asked me to come with her when choosing the food as found it overwhelming (it is overwhelming even if you've not got an ED tbf!)

But she ate a decent variety of foods, went back up for a bit more as I pointed out the plates are stupidly small and managed desert.

Lots of guilt afterwards but manageable.

yes was thinking about applying for Dla. But I just did the renewal for DD1 and it took half a year so I know waiting times are endless meaning no money would come in in the short term and even with, it will not plug the hole leaving work would leave. DH earns too much for UC (but not enough to cover outgoings - big mortgage). So giving up work is not possible. Plus, DH told me yesterday he is planning on leaving us. He says he cannot handle the stress :(

On the plus side, this would mean I guess I can apply for UC but not sure how I cover the mortgage. It's just such a fuck up. how did we get here .

also, DD's weight is dropping by about 1kg per week. We never had bloods done or ECG and I keep reading here that others get those checked with anorexia esp if things are bad? ED keeps talking about referring her for bloods but never do.

How important is it to get these done? and is there a different way to get them sorted? Can I ask Go to refer? DD is only 12 so our surgery doesn't do them.