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

@SupportNeededED

As a rule of thumb we have been told to attend a&e if the food intake was less than 500 cals per day for 2 consecutive days. If she is still on 200 cals she should take her. If she doesn't wanna get into her mum's car, mum needs to ring 999. They will despatch an ambulance (I have been there with a child refusing to go with me). The daughter needs to eat but will need medical supervision to avoid refeeding syndrome.

A private clinic may help with establishing FBT but it sounds like she needs more than that and help with re-establishing feeding. That is inpatient stuff, nothing you do from home. Also, GPs often do not understand how serious AN can be.

@Roui sorry you are let down so badly. Do you think PALS is worth a shot?

We had a weigh in today. DD also lost about 1kg in the last 3 weeks (not totally sure how much as she decided to drink a huge amount of water before the weigh in to inflate her weight).
DD was allowed the last few weeks to have her morning snack unsupervised at school and only have lunch supervised. If weight is not up next time, snack will need to go back under supervision. I guess the snack doesn't get eaten.

Reading recurring stories sadly ...
It took us just over 7 months from contacting GP and camhs for DC to get treatment. At the start DC was normal weight so they discharged her , in the end she was about 76%wfh.
Keep pestering is my advice.

We've lost weight again today, they were very tempted to re-admit to hospital as his weight needs to increase asap. I'm so crushed it's untrue, he has stuck to the plan and every meal has been supervised, no exercise (I am with him every waking hour). We have fortisip shakes and nurses coming to the house to supervise the next few lunches, weight and obs review on Friday and if no improvement in he goes 😔

@Proseccoismyfriend Really sorry. Do you think the meal plan is too small? Any chance he is purging? Is he banned from using the bathroom 30-60 mins after eating?

Prosecco** any chance of hyper metabolism? Has he been having any symptoms of feeling hot? Fast heart rate?

For some kids to gain they need to eat a huge amount of food, some need between 5000-10000 calories a day.

@Proseccoismyfriend such disappointing news, must be so disheartening to work so hard and not see any benefit.

I've got a question about taking time off work, I'm going to the GP tomorrow but I'm not sure if sick leave or carer's leave is best to ask for.

We're going to have to do supervised lunches next week so it will be impossible to go to work. I'm also not in a good place mentally for work (it's emotionally demanding and I need all my patience ).

My job's sick leave is rubbish, about 10 days a year (I wish I still worked for the NHS!!) I can't even think straight enough to work out what is best. We might be able to manage for a while without my salary but long term it wouldn't be great.

If you've tried to keep your job, what have you done?

Definitely not purging he goes to the loo before we eat but also isn't old enough to want to close the door yet so all doors are open when he's in the bathroom. They are wondering about a really fast metabolism, he wasn't a big lad before and probably just had enough calories to keep him ticking over. They feel we can't increase the plan too much which is why we've gone with shakes, really hoping it's the kick start he needs to head in the right direction. He practically licked his plate clean not one crumb was left, he was sobbing poor kid

@Eyelashesoffire sorry I have no advice re work, I am so fortunate I can work from home and pick up once kids are in bed. I'd let the gp decide the best way to go re carer or sick leave but it's so hard to put a time frame on it. Sending a virtual hug

Oh no @Proseccoismyfriend, really sorry to hear that! Can you just ramp up calories and see if that helps at all? I made my dd a milkshake this afternoon and she said it was good because it didn't taste like disgusting slime like usual. So there's a recommendation for you! I make it in the smoothie maker with 100ml double cream, a small pot of Haagen dasz icecream, half a banana, 10mls of rapeseed oil and a heaped teaspoon of cashew nut butter. I think it's around 800ish calories, makes a small glass so it's not too daunting.

Sending you huge hugs and same for your ds, hope things turn around soon.

@Eyelashesoffire I was signed off for 2 weeks sick by my dr, and then had a 2 week phased return. I'm back properly now but with a flexible working pattern so I can take time around mealtimes and snack time and catch up later. My DH has also been allowed to work from home a couple of days a week which is a huge help. This is so so hard, I feel like it's the worst thing I've ever had to do in my life. I'm in bed early most nights because I've just completely run out of steam. Hope you can get things back on track with lunch

Eyelashes I got signed off work with stress for around 6 weeks, have you checked if you're entitled to any benefits?

Prosecco he might be feel extreme hunger as well if it is hyper metabolism, I think you're going to have to massively ramp the calories up. I used to make my dd a bowl of porridge that was approximately 800 cals and I know it is possible to get it up to 1000 cals if you wanted to. I also had dd drinking 1000 calorie milkshakes. She needed 3000-4000 cals a day to gain around 0.5kgs a week.

@Girliefriendlikespuppies - Thanks for checking in. DD is still recovery-focussed, which is great, but didn't hit her 95% WFH by her target discharge date. She is currently 87% wfh, and has been either maintaining or losing weight in the community since she started having 3-4 nights per week home leave - she confessed yesterday that she has been doing excessive exercise. It's her CPA (multi-agency meeting) on Friday to discuss next steps. The community team and her therapist are advocating for discharge under a Community Treatment Order (where, theoretically, if she relapses, she goes back on a Tier 4 waiting list). The consultant psychiatrist at the hospital wants to keep her in until 93% wfh. We are torn really - she HATES going back to hospital and becomes extremely distressed - she has been in longer than anyone, and is now much older than the other girls in there, who are mainly 14. Most of the others are on NG tubes, so this is really triggering for her (ED telling her she should be refusing food too). She can hear people being restrained and this brings back lots of triggering memories, so she has started self-harming again. On the other hand, if she comes out, gradually loses weight and the AN cognitions get stronger, then I have serious doubts (shared by the hospital's consultant psychiatrist) that there will actually be a place for her CTO or no CTO. She is already 17 years and 8 months and won't be able to have a place in a children's ward when she is 18.

@Eyelashesoffire Any chance you can WFH? I worked fully from home for a while and did work late in the evening remotely when DD was in hospital. It all wasn't ideal but at lease I was able to carry on working.

Any chance you take annual leave if money is an obstacle? Could your DH (if you have one) take some leave too. spread the load...

@Curlyhairedassasin thanks, it's good to think more about the options, it's so helpful to hear what others have done. We might have to think outside the box to keep finances afloat and my brain power is definitely in 'low' mode. My working memory is shot, I forgot to lock the car yesterday, I'm walking into a room and have no idea why I'm there. My hands are twitching and shaking. I'm bursting into tears while I'm driving.

I went to a health appointment yesterday and the woman said her daughter had AN, recovered now and finished her degree. So uplifting to hear!

Unfortunately I work in a school so WFH and AL aren't a possibility. DH is in a similar position though he can WFH 2 days a week so maybe we can work around that.

I've got a sick note for 2 weeks and that's such a relief. Work were lovely about it. I can't even think about what will happen at the end of the 2 weeks. I need to make possible every moment relaxing when I'm not trying to feed DD!

@Proseccoismyfriend thanks for the virtual hug! How is it going?

@NanFlanders that sounds really tough, there's no great option, only the least worst I suppose. Hope you find a way through.

@greydoor the smoothie recipe looks good, I might try that but DD is very funny about dairy. Does anyone have any recipes for something similar but without dairy?

Also when have you introduced 'fear foods'? Part of me thinks we just need to get her weight up to above 90wfh but it would be so much easier if she ate meat, dairy, beans. She didn't eat much of these things before the ED.

@Eyelashesoffire have you considered applying for DLA. You need to demonstrate higher care needs than for a typical child. It may help with the cost, may make being signed off sick a bit more doable. Also, you are entitled to unpaid parental leave. Each parent has a 'bank' of 18 weeks to use by the time the child is 18. You can take max 4 weeks per year. However, it is a statutory right. Not sure how it would work if you work in a school setting but clearly your statutory rights should be unaffected. Something to look into.

@Eyelashesoffire
https://www.gov.uk/parental-leave

@Curlyhairedassasin thanks I hadn't thought of DLA, so ironic I advise people about this at work!! The children I work with will have life long needs and I suppose I was thinking about DD getting better hopefully soon. I will look into it.

@Eyelashesoffire - On DLA, its important to emphasize how long things take - meals etc. and the support your DC needs. The ED team wrote a really helpful letter for our PIP application. Get the application in now, as it takes months to sort, but us backdated to your date of application.

Thanks everyone, the calories have increased by another 500-800 a day nurses that came to the house today we're happy so let's hope this is the push he needs and come Friday we might be in a slightly better position when they review.
The smoothie sounds good @greydoor I'll definitely give it a whirl.
Sorry I feel I can't reply properly right now just wanted to say I appreciate all of your support. Now the kids are in bed I'm treating myself to a glass of Prosecco and a good cry

@Eyelashesoffire DLA awards can be several years or just a year and then you need to reapply. Depends on the condition you apply for and also on the division maker. all a little lottery. But it doesn't have to be a condition which is permanent/lifelong. Waiting times after applying are currently are about 20 weeks. If you ring them, they send you the form and then you have 6 weeks to complete them and if awarded, award will be backdated to the day you rang to request the form.

@Proseccoismyfriend hope you've had a good sleep, today is a new day. This thing is the absolute pits, I'm with you. The extra calories sound good and hope they turn your ds around back into gaining. My approach to this has been to cram as many calories as possible into the smallest possible sized meal using oil, double cream, butter and nut butter.

@Eyelashesoffire I just wanted to say that i am in a similar place emotionally. My working memory is completely gone (tried to remember a code texted to me today, 4 digits and I couldn't !!), I'm also finding myself crying at various times every day. Although I'm back at work properly I'm not actually sure how sustainable it is - I am most definitely not going to win employee of the year, I'm just hoping I don't make a mistake that gets me sacked. I can't really see an alternative, my job is really full on and it's not possible to do it to a lesser intensity, and things just stall and wait for me if I'm off. I think many of us on this thread are in a similar position, it's very stressful trying to juggle everything, living in hope it improves. Hope your 2 weeks off are restorative, I was counting the number of weeks to the Christmas break today 😂

Re fear foods, we haven't tried to tackle any yet in a planned way. My dd has been quite rigid in terms of wanting to eat the same foods for each meal, and I think that's our next thing to try and sort. She doesn't really object to many foods, although she isn't allowed into the kitchen when I'm cooking so not sure she knows what she is eating. Just prior to discovering ed she had said she wanted to be vegetarian, but we have stopped that during refeeding and have a lot of meat and other animal products now.

Hope everyone has a good day today.

@greydoor thanks it is reassuring that it's normal to feel like this. I tried your smoothie recipe and was impressed at how small the portion looked. DD wouldn't have more than a sip but DS (who doesn't have an ED but actually could also do with some extra calories) did drink it so a win for one of my children!

We went to school today and met with her head of year, who was very understanding and will look into supervised lunches. In a very unexpected plot twist she shared that she has very personal experience of ED. I was not expecting that at all. I'm dreading telling DD that school are going to get involved, it will provoke a massive meltdown. 😔

Hello, I haven't got a handle on everyone's names, but I used to spend a lot of time on this thread - @Lottsbiffandsmudge and @Girliefriendlikespuppies were stalwarts back then and now.

I got lured over to the Elderly Parents board as no sooner had things improved with DD, did my parents deteriorated at warp speed.

I just wanted to say to anyone on here that you are doing fantastically even though you may feel as if you are flailing and failing. Guiding someone with an ED is the most thankless and difficult of tasks - the fact that you are here, you are involved, you are not in denial and your child is reasonably young means that you have every chance of success.

DD developed anorexia in lockdown, was diagnosed at the end of 2020 and was about 70% WFH, I think. It took so long for her to make any improvements and her weight remained stubbornly low for a year. I couldn't see how we'd ever get out of it. She did and said some shocking things.

She was never admitted because her stats were always fine despite the low body weight. Echoing what others have said, I do think it's important to individualise goal weights. She's still nowhere near 100 WFH despite being well and healthy.

Which brings me to her recovery. In Spring 2022, she mysteriously and miraculous gave up on anorexia. Somehow she realised that life could offer her more than not eating. She was soon able to go to school full-time and eat largely unsupervised. For us (and it's very individual), I think maintaining a sense of a world beyond AN was crucial and it meant we sometimes went against doctor's orders in letting her hang out with friends or do some sport.

She did GSCEs this year and did well, especially given how much school she'd missed. She's moved to a new sixth form and is struggling with it (it's huge and notoriously 'cool') but hasn't fallen back into old habits around food. She's even, miracles, stopped being a vegetarian. She's lovely too - the vile, mean behaviour wasn't her, it was anorexia.

Sorry this is long but I just wanted to say that anorexia's not like alcoholism - it needn't be something they have to live with their whole lives. I know so many middle-aged women who've come out to me as teenage anorexics and they are living normal lives with no ill effects to their health, fertility etc. Whenever I asked them how they got better, they all say something along the lines of 'I don't know, I just got bored of it'.

@Valleyofthedollymix how lovely to hear your update and I am so glad your DD is properly recovered.
My DD is similar in as much as she is properly recovered and I no longer think about her food (except in the context of her sport and the nutrition for that).
We were both in the thick of it at the same time (DD's AN also came on in lockdown) and I remember you well.
So heartening for all those currently at the coal face to hear stories of recovery , I know I hung onto them in my darkest days.
Take care

@Valleyofthedollymix what a lovely post, I really needed to read that today. So your DD was ill for 2 years? That's also very heartening to hear. Timescales seem to be generally very depressing.

I find it so interesting, the trigger for recovery, it all seems to be a variation on the same theme - I just woke up one day and decided it was time to get on with the rest of my life. We've also let our DD have a social life, if she can eat under our supervision. She doesn't do a lot but she's always happy when she sees her friends. Our CAMHS team haven't forbidden it.