Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

Daughter has a few chocolate calories, meringues, maybe a yoghurt every day, plus 3 shakes a day. These are prescribed and are 300 cals each. We’re probably just about reaching 1200 cals a day. But it’s not improving her weight. (still losing) Are there shakes I can get prescribed that have higher cals? Basically assuming that’s all she’ll ‘eat’ I guess. Thanks.

@Hennups13 i apologies for my forgetfulness but is your dd still at home?

No apology necessary. Yes she is. She’s well in herself but I’m monitoring her closely for any sudden decline. She’s lost 10lb in total now. She’s gone from 90th to 70th centile.

@Curlyhairedassasin could you possibly do a wfh for me? Born end Jan 2012, weight 27.2kg, height 141.6cm?
The unit are saying she's at 68% wfh. I had thought it was more like 76%...

@GrannyRoberts
The calculator I have (and I have no idea if there are different standards for calculating) gives me 76.44%wfh. It tends to be in line with what our ED clinic is calculating for DD too.

How are you getting on anyways? Are you still on the medical ward? Hope you are coping ok. I was so low when DD was admitted.

@Curlyhairedassasin thank you. I think they have made a mistake somewhere. Today has been horrendous. DD has been moved up to the psych ward and Is distraught. I feel like we're betraying her leaving her here.

@GrannyRoberts

really sorry things are so tough. DD spend three weeks on the medical ward and was the discharged. I guess unlike the medical ward you cannot be with them on the psych ward all day? Are you allowed to visit daily?

@GrannyRoberts so sorry to hear it's been a really tough day. Look after yourself. Take the time and space to recharge, knowing that she is being looked after. She won't remember much, if any, of this period when she is better. It will all be a blur. Be kind to yourself.

@Curlyhairedassasin yes allowed to visit daily however I got the very strong sense today that it's discouraged. And honestly given they are saying she'll be there several months I don't know whether we can sustain daily visits with 2 full time jobs. What do people do about work? We can't afford not to have two wages, especially with the additional costs of going backwards and forwards to the hospital.
I'm exhausted, going to bed and hopefully in the morning with a bit more sleep under my belt I'll feel less desperate.

@GrannyRoberts
I totally understand that daily visits are not sustainable in the long run. When DD was inpatient we had to be there all the time for meal support and it was so stressful. I was working from the ward (my work can be done remotely) and carried on working remotely when we were discharged. But I have to say I am cracking up. I fudged up a few things at work now 🥵 The doctors and ED team suggested I get signed off with stress as DD needs such an intense support at home but I am on statutory sick pay so it's not doable.

I asked this question here and I think a number of parents got signed off. Is that an option for you? at least for a few weeks to recuperate a little bit? Hopefully things will get a little bit easier now for you with DD on the psych ward.

@Curlyhairedassasin I'm so sorry it's been so hard for you. I'm not surprised you're cracking up. It's impossible to do it all. Do you have any family support?
I'm fortunate that getting signed off is an option for me and it may be something I have to think about. I need to see what pattern we settle into with visits etc.

@GrannyRoberts just DH who works long hours but no wider family and DC1 has complex special needs (severe learning difficulties/ASD) and needs 24/7 support. I only work part time already but even that feels too much. Glad you have the option of taking some time out. I would recommend that. I thought things get easier once eating improves a bit but the intense meal support at home is in a way harder work than her being in hospital.

@Curlyhairedassasin that sounds so tough...I'm so sorry you're having to deal with all of that. Is there any respite care available to you?

Slightly better day for DD today so far, she was calmer and seemed somewhat happier when we visited today. She had been playing card games with some of the other girls and had a good chat with one of the nurses about the different stages of recovery. At the moment they have her in a wheelchair the whole time due to her extremely low weight which is driving her crazy. She's been engaging well with the meals (as I understand it, we're not allowed to be there) but she didn't eat the before bed snack last night as it is one of her main fear times for eating. I'm so worried they will NG her tonight if she won't eat. And she will be so upset and we won't be there

Granny as your dd is now on the ward I'd be tempted to save getting signed off for when she is ready to be discharged 😕 it might be that you and your dh could take turns to visit in the evenings for now (and more at weekends.)

When she gets home you'll need to be around 24/7 to keep the momentum up and be vigilant for any sliding backwards.

Curly I'm not surprised you're cracking up, I'm not sure how you've kept going tbh. Did you apply for DLA for AN dd? That might take some of the pressure off.

We're having a nice time away, it's never completely stress free but where we're staying is nice and I've done a combination of eating in and dinner out. Dds not been too bad although probably eating slightly less than usual.

Hi everyone, hope it's ok to join and sorry for all the difficulties you're all going through.

Dd is 17.5 yo and we think suffering from an ED since February. Things were not to bad until end of May while she was focused in her exams but have really gone down hill since. She reduced her intake to around 700cals per day and lost a lot of weight really quickly. We've been with CAMHS for 3-4 weeks but nothing really has helped.

Up to now we were trying to allow dd to have some control. She potentially has ASD and gets very distressed when things are outside her control like me preparing her food, so despite all efforts her intake really hasn't gone up. CAMHS advice was that she cannot control her food and we need to provide it to her which we're trying to do since Monday. She point blank refuses and has eaten 200 cals per day since. We got so worried we took her to A&E but her obs and blood were fine and I was left feeling like the paranoid mummy.....

So now I just don't know what to do. She will eat meals she puts together which amount to ~200calz and nothing else. I'm refusing to allow her ☹️. Are we doing the wrong thing? How do we push through?

She was 77% of BMI on Monday

@LaCerbiatta

Really sorry you are having such a hard time. If she is not managing more than 200 cals, she needs to be admitted urgently I would say. Is camhs aware that she is eating so little? What obs did you have done in hospital? Standard are ECG, heart rate, bloods and blood pressure.

Fwiw, I took DD to a&e and obs ok and 2 days later she was bluelighted to hospital and put into HDU. If they do not eat, things do escalate very quickly.

If she is not managing more than 200 cals per day, I would take her back. She is not save at home.

Thanks @Curlyhairedassasin , CAMHS are aware and we'll tell them agaon today. They did all those checks at hospital, after some reluctance... ECH had some anomalies but they were happy that the bloods were fine ☹️

So sorry for your dd, it's all so scary ☹️

I would take her back. eating so little and abnormal ECG. What do they think will happen? If she ate so little for a while, she needs re-feeding under medical care as there is the danger of re-feeding syndrome.

@LaCerbiatta is there a different a&e near you that you could go to?

Thanks, I'll see what CAMHS say today and will specifically ask about refeeding.
We're 2 mins away from a really good hospital (execept for ED awareness in A&E!) and nothing else decent close by.

LaCerbiatta I'm so sorry you are joining us. I agree your dd should be attending hospital at that low weight and eating so few calories as she could become very ill very quickly.

FBT is especially difficult with older teens who are used to some independence. She needs to understand that she is very poorly and that you are the best one to help her get better.

Camhs haven't been great for us apart from keeping an eye on dd physically. I've found much better advice here and from Eva Musby - she is on youtube and her book is really helpful. I also find the Parenting Mental Health facebook group really helpful. It's sad that so many young people are struggling but there's nothing like the support you get from other parents and carers who know exactly what you are going through.

My dd hated hospital so I had some leverage to get her to eat at home. If she didn't eat we were getting in the car..
It was very slow progress but I got back control of one meal at a time. We created our own meal plan and I then added as much fat to every meal as I could. Slowly the weight went on and with the weight came more acceptance that I was helping her. She's now 17 and I make all her meals and she complies without too much resistance, although we do have some bad days still.

It's horrific at first but it does get easier. You find strategies and you become mentally stronger yourself in coping with the meltdowns. Looking after yourself is incredibly important and pull in all the help you can from family and friends.

Sending you both love and I hope you get the help you need. Be prepared to fight a bit if you come across a medical professional who doesn't take you seriously. ED is still very misunderstood, sadly x

Welcome lacerbiatta it is so hard with older teens especially when you add ASD into the mix.

Is it the ED service you're working with? General Camhs are zero help when it comes to EDs.

Have you got any leverage over your dd? Her phone? Money? College? She sounds seriously ill so use whatever you can to get the food in.

Would she be open to working with you on devising a meal plan? I wouldn't usually suggest this but for some ASD teens this gives them enough of a sense of control to eat. You would still prepare and give her the food so can add calories and ensure the portion size is adequate.

Anything less than 500cals a day needs an a&e trip, the fact they didn't admit when her ecg was off is terrifying tbh. Don't be afraid to kick off and say you want a safeguarding referral as you don't believe you can keep your dd safe/alive at home with out a huge increase In support.

Thank you so much @Girliefriendlikespuppies and @BagpussSaggyOldClothCat , it's reassuring (in a way) to know that I'm not exaggerating and that she did need medical attention. Their reason for minimising the ECG was that the changes were minor and they would have been supported by abnormal bloods.

Doing a meal plan together is a great suggestion and one I've also considered to allow her to keep some control

Today seems like a positive day, she got up early and had a decent ish breakfast, more than yesterday, and has mentioned lunch so fingers crossed she'll get some calories in!

Just continuing from my laptop so it's easier to type!

I'm not sure yet what works in terms of leverage. I think anything that risks her academic ambitions will always work to some extent, but she finished her year 12 exams and there really isn't much happening until September, so no real incentive to get better. We thought not being able to go to school would have an impact, but really nothing so far.

@Girliefriendlikespuppies what do you mean by ED? Is that the adults service ? She's been with CAMHS for 3 weeks and is being handed over to the adults service now, first session on Monday. They have indeed not been great and dd lost so much weight and has been so much more distressed since she started there. She probably would anyway, but their suggestions and advice has been poor and not really adapted to her... very formulaic. I suppose there is no time to get to the bottom of the mental issues...

When you say that anything less than 500 cals needs a trip to A&E, is that for a few days? 2, 3? When do you think it's really dangerous that we need to really pull out all resources and be forceful at A&E? I suppose it depends on weight and recent weight loss?

Thanks @BagpussSaggyOldClothCat your message is comforting that things can get better in how we manage this. It's all so overwhelming at first :( . DD has serious health anxiety and we really thought that the threat of going to hospital would really have an impact but it really didn't, I think in a way she was hoping that someone else would take over and it wouldn't be for her to anguish over it in a way.

Thanks all for the helpful and selfless advice, I'm finding this thread an amazing resource!