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

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

Hope all the regulars find it!

@Proseccoismyfriend you son sounds how my dd was she does athletics. When we threatened to take away the running if she didn’t eat it did force her into a corner. She couldn’t eat a lot but did agree to having protein shakes we used huel as we already had in cupboard. They are 400 cal per 500ml but if you make with milk can be up to 700 Cals or more if full fat milk. We gave her two per day although it wasn’t eating it saved her really in the weeks waiting for the appointment as kept her calories up to a safe level alongside the food she felt safe to eat. I think she could cope better with liquid than eating at the time. Slowly she has increased to eating more so we got rid of one of the shakes. In the beginning you just do your best because you don’t know what to do and it’s very upsetting. Ignore your family and tell them not to undermine you. It’s not something that just goes away and is not a phase. It is very serious I’m so glad my gp took it seriously. When is your appointment with dr? X

Saw the gp this morning and she was as concerned as us and so understanding. I ended up sobbing throughout the appointment. We've been referred urgently to the community paediatrician as there is a team there to hopefully get to the bottom of it and give us the correct support depending on the diagnosis. I felt she was steered more towards him being generally unwell as he's eating little amounts and wants to but has no appetite, I was stressing how much he's gone from just walking round the house or room to room and now he jogs, no longer uses the downstairs loo will head upstairs. He has an Apple Watch and really gets focused on closing all the 'rings' and his stand goal, I am tempted to hide it. We stopped his training on Sunday and again tonight, tonight there wasn't as much upset as Sunday and I just said only he can fix it. If he eats enough he can train. I will look into the shakes and see if he'll give them a try, I'll try anything. The awful feeling of being helpless and not knowing what's on his mind is killing me, my stomach is in knots. I'm going to ring the clinic we've been referred to tomorrow and offer to take a cancellation just incase one comes up which I very much doubt but at least I've tried all avenues.
A friend suggested paying privately for a paediatrician, has anyone done this?

Prosecco** your ds sounds completely in the grips of anorexia, 100% take the watch off him and check any other devices for anything related to exercise or weight loss. Has he been referred to the ED service? You need this service rather than a paediatrician.

The compulsion to exercise and stand is all linked to weight loss and will improve once the food starts going in. The quicker the weight goes on the quicker recovery will be.

There is an eating disorder clinic there it's an umbrella service (gp's words) I was hoping they'd take bloods asap and if they rule out illness start the ball roll for helping him get over the ed. How on earth does this just happen. DH saw him looking at his body in the mirror and he's so so thin, I don't know if he was looking to see or admiring 😢

On a positive since last week he has gained half a lb, small steps. I'm off to get his watch and put it in the car

@Proseccoismyfriend dd not wearing a watch made a huge difference. Not only was it the rings closing, but the reminders hourly to do exercise were pushing her more and more.

I totally agree. The watch has to go. He is in the grips of an ED. The weight loss initially may have been because of AFRID or being generally unwell etc but it's irrelevant why. He lost weight and now the AN has taken hold.
My DD was the same. She never meant to lose weight. But she did (by trying to be as fit as she could for her sport and thinking eating 'healthily' (ie less) and doing more and more training would help) and then she got AN. Weight loss caused it in those genetically predisposed, it doesnt matter why that weight loss occurs. It's a myth that all ED sufferers are obsessed with how they look. Lots are but people like your DS and my DD are driven by other factors. The outcome is the same. And the treatment.
Essentially he needs food ASAP. Did she check HR, BP do/ order an ECG and full bloods? I'd suggest you start a meal plan ASAP but I'm worried about refeeding syndrome.
The ED doesn't care if he trains or not. It just wants him not to eat/ burn cals. If the ED can get this exercise elsewhere it doesn't care if he is missing something he used to love. That's one of the things I found most difficult in DDs journey. Her sport became a way for her ED to burn calories and nothing more. All the joy in her beloved football drained away. If the session wasn't 'intense' enough she'd run laps... it was no longer about sport and all about calorie burning.
He needs urgent ED support.

Every single smart watch is now safely in my glove box. Dr really struggled to get his oxygen levels due to his hands and feet being so cold, when this all started approx 3 weeks ago he was complaining of cold hands and feet, she did his weight and height and was tempted to do bloods but wanted to speak to a colleague first who then advised the clinic to carry out their own blood tests.

@Proseccoismyfriend did you have any obs done at the GP? body temp, heart rate, blood pressure etc? Do you know his weight for height? If not, I would really be tempted to take him to a&e to get him checked out. DD felt cold one evening and her body temp was just about 35. Her heart rate was under 40. This landed her in hospital with an admission to HDU. she was still kicking off at that point but clinically very unwell. With EDs, you cannot always tell from the outside how ill someone is. Hence these checks (heart rate, ecg, bloods to check for electrolytes changes) and so important.

Cold hands and feet is not a good sign, it would be worth taking him to a&e and getting a full medical check up there. Have a look at the MEEDs check list for what they need to check.

Agree with lots re refeeding syndrome ideally he needs to start the refeeding plan with full medical supervision.

Would a&e do this even though he's now in the referral system? I was given the impression they wouldn't.
He had his heart rate and oxygen sats checked 26.2kg and 135cm. He's taken the news of no smart watch pretty well

@Proseccoismyfriend yes, they would. we attended a&e twice within 3 days whilst being under the ED team. I would go.

He's probably relieved.

Yes a&e should definitely take it seriously, he may need admission to get refeeding underway anyway.

Hi, I found this thread a few days ago and have been trying to read and understand more about what we seem to be facing. I'm pretty sure my 12 year old daughter has anorexia, I spoke to the GP this morning for advice and they are going to refer to specialist service once I've taken her in tomorrow to get an accurate height and weight.

It's all really crept up and I feel like I'm only just seeing what's been happening properly, despite noticing changes in eating and exercise for about 4 months now, and having had lots and lots of chats about food being energy and supporting her to try and increase food. I think it's been triggered by starting high school last year, she has really struggled with adjusting. This morning was the straw that broke the camels back after I found her breakfast flushed down the toilet, and realised that things are much worse than I thought.

I think she is about 162cm and around 40kg, but that weight is a bit of a guess, taken from a weight loss app I've just found on her phone where she had inputted her weight about a month ago as 41kg - she has definitely lost weight since then.

I'm a bit beside myself and just wondering what to expect after the GP makes the referral tomorrow - could anyone give me some advice? I can't quite believe what's happening, and I just want to do anything to help her be healthy again.

Grey welcome to the thread although sorry you've had to find us.

EDs do creep up and I think most parents can't actually believe it's happening to their child so stay in denial for as long as possible.

How much is your dd actually eating? If she's loosing weight and the food isn't going in she could be in physically really struggling. The Dr needs to do a full set of obs (heart rate, sitting and standing bp, bloods and an ecg) you need an urgent referral to the ED service.

All exercise must stop, her heart could already be struggling so it's vital to stop exercising.

She may not be well enough to return to school and you need to start preparing yourself for FBT (family based treatment) whereby you take full control of all food related decisions for your dd.

She must eat 3 meals and 3 snacks a day.

Once this is implemented you will see the ED monster in all its glory anorexia will come out fighting. The idea is you stay calm but insistent 'you have to eat this food/you need to start eating now/please pick up the fork and start eating/this is the correct amount trust me/I know exactly what you need trust me.

Eva Musby is useful and has lots of useful info on YouTube.

It is a bit like turning the titanic at the beginning but it is possible especially given that your dd is young to turn things around fairly quickly.

@greydoor Sorry you find yourself here - but welcome. (I've found the support here incredible since my DD got sick). You will probably be referred to your local eating disorder service, which should see you within 4 weeks and will prescribe family-based treatment (FBT), where you sit with DD and support her to eat 3 meals and 3 snacks a day. You can find lots of hints and tips on Eva Musby's website. I'd say start now, i.e. prior to your appointment) as young people can go downhill very quickly. While you are waiting, you should be attend the GP every week to have medical obs done (heart rate, BP and weight). It will be so hard and your DD is likely to be distressed, but it is an effective treatment for the majority. The consultant with the ED service may prescribe olanzapine and/or an antidepressant to help your DD cope with the anxiety that restarting food can provoke. You can also buy high calorie drinks, such as Fortisip, Boost or Ensure to help reverse the weight loss. Wishing you all the best.

Thank you both for replying so quickly, that's incredibly helpful. I've had a look at the Eva Musby website, bought the book and will continue to read and get started on the family based treatment approach tomorrow.

She is really eating very little now. She gets up early to eat breakfast (a protein yogurt and fruit) before we go down, but I realised this morning that she is flushing it down the toilet. I suspect she has been skipping lunch at school, she used to take a packed lunch but changed to canteen lunches and I can see that she has been buying soup every day since they went back 2 weeks ago (Scotland). But I suspect she isn't eating it. The last couple of days she said she had gone to the co-op with friends and had bought a sandwich, but I'm certain that isn't true. She has been leaving some of her evening meal, and had said a couple of months ago she would like to eat less meat, so I've been cooking much more of a plant based diet. I'm realising this was a tactic to make meals less calorific... and that's basically it. No snacks, only drinking water. It's only been this bad for a couple of weeks, and I've been trying to support her to eat more by getting her more involved in choosing snacks and meals, Hoping a sense of ownership might help, but it hasn't.

She has already had a few blood tests at the start of the month, as she as complaining of being cold when we were on holiday (in a hot place). I was worried she was anaemic or under active thyroid, and they seemed to do a whole raft of tests including those, and all seemingly normal.

I'm just so gutted for her that she is struggling so much, and I feel like I've been hit with a brick in realising how bad it's become without me really acknowledging it until now.

I will find out tomorrow what the expected timescales are, and am really hoping we don't have to wait too long. But I don't think we can wait to get started with feeding her properly. I'm dreading how awful this is going to make her feel initially, and how I will cope with her reactions to it all. She is the most skilled out of my kids in pushing my buttons, so I know this is going to happen and I need to really think about how to manage myself so I don't react.

Thats a whole brain dump. Thank you so much, i can't tell you how much you've helped.

@greydoor I have a 12 year old who is a bit shorter than your DD and heavier and she had to stop school last year due to WFH (weight for height - they do not use BMI in children). If she is not eating and her weight is that low at such a hight, she probably shouldn't be in school and I guess you will be told stop stop school. Guess this is someone to get prepared for. My DD had to be on bed rest to preserve energy.

If the GP cannot/does not do all the tests, consider a&e. We always have been told if DD takes in less than 500 cals for a few days to attend a&e for bloods, ECG etc. Doesn't sound like you'd DD is eating much at all.

Hope the GP is on the ball and you will be referred and seen quickly.

greydoor

So sorry you find yourself here. You've had great advice already. Most ED sufferers try to insist on plant based food which is the worst option when they need to feed their brain. Animal fats get the brain better again. Make sure she's getting a vitamin supplement plus a good vitamin B complex that's high in B1 and B12 and plenty of Vit D going into the winter.

The quicker you can start the FBT and 3 meals 3 snacks per day the better. It's incredibly difficult if they push back hard but keep going. Distractions can help instead of just sitting at the table. My dd ate better when watching TV so that became our routine. Its often after eating that they feel the worst and purging may become an issue so try to keep her with you and suggest a game or do some craft together until the feeling subsides.

You'll need support from family and friends. Do you have a dh/dp? He may need to take over more care of your other dc while you concentrate on dd. Be aware you may come across some unhelpful comments from family and friends as it's difficult for people to understand if they've never come across someone with an ED before. I sent videos and articles as it's emotionally draining to have to keep explaining it in depth to people. I shouldn't generalise but I found the older people to be less understanding and heard a lot of 'We didn't have eating disorders in our day' which is obviously rubbish but they probably just didn't hear about it without 24 hour rolling news and the internet.

I agree Eva Musby is the best guide to getting through FBT. Have a look at her YouTube videos and her bitesize audios. I find her voice and her gentle guidance really comforting.

Hi @greydoor agree with all that's been said so far.
Please don't beat yourself up. We have all been there when we realised we hadn't realised or 'seen' the weight loss. And we all felt/ feel horrendously guilty. But EDs are very very sneaky.
So other than the sound advice above here are my 'tips'
She must have no involvement with food. Shopping, choosing, cooking, serving. It feels counterintuitive but it is the only way.
Imagine there is a terrorist in DDs head holding her at gun point. That's the ED. It makes her make any choices she is allowed in the EDs favour. And all the ED wants to do is not eat.
Separating the ED from the child is key to managing your own distress. The ED is angry. The ED is hysterical not the child. She will get very angry/ hysterical/ run away... whatever she thinks will work to try to get you to back down. Poke the ED, make her cross. It means food is going in. The emotional side will calm down with weight gain. Your poor DD has a monster in her head shouting at her and bullying her constantly.
Make a meal and snack plan. Start with the things she used to eat easily. And then implement it. Use Eva tips to help and any leverage you have to get her to eat.
Put meat back in- you are right her vegetarianism is an ED ploy
Look up distress tolerance. It essentially means being alongside their distress but not experiencing your self. Being physically present but saying very little such as ' I can see how hard this is for you' and ' i am so sorry this is so hard for you'... . and yes a lot of 'this is what you need' ' this is safe' etc etc
You have to get up before her and be with her for at least an hour after every meal and snack to prevent purging/ food being thrown
Stop trusting her. EDs are totally untrustworthy. I could not believe some of the bare faced lies my DD told me nor the lengths the ED went to to sneak in exercise and hide food. Short sleeves at meals, no unsupervised time out-of house to begin with etc. My DD was totally trustworthy, her ED was not.
Strap in for a long ride
Forgive yourself if you lose it, get it wrong, meals are missed but get up every day determined to try again.
Most young sufferers do best at home if at all possible.
Push for meds, olanzapine has helped many on here. It works quickly at quietening the ED voice (a little) it's not a magic bullet but it can help take an edge off the distress.
And yes she will prob have to come out of school.
Please stay on here for support. We are all here for you.

Oh and distraction at meals tv, games, puzzles whatever helps. Break all the rules and eat TV meals everyday dd and I watched a Netflix series together!

Hi @greydoor , I’m new too. I took my DD (11) to GP after National weight programme came up low. She was referred to GP MH nurse who discussed her over the phone and referred to ED service. Took about two weeks from discussion to appointment. I’m veering between she’s ok just slight, and deep distress that I’ve missed things/let her down. Lots of unhelpful comments from family trying to be kind but missing the point. Blood tests were normal, DD wants to be largely vegetarian too.

Hi Grey, sorry to read your posts but glad that you’ve found this thread. My daughter is older so I can’t add anything to what others have said except to be kind to yourself. And take time to look after yourself, go for a walk, meet friends etc. it’ll feel impossible when your DD is so unwell but it is essential to maintain your own MH during this process. You will hear expressions such as ‘put on your own oxygen mask first’ and ‘you can’t pour from an empty cup’ and they really are true. This illness will take so much of your time and restrict what you can do as a family so you need to look after yourself to be able to cope with it. Many times, I’ve come home from somewhere and just sat in the car rather than face what awaits me inside. Then, when I’m caught, I pretend to be listening to a really gripping interview on the radio! I really wish you well and hope you get the help needed to turn this around as quickly as possible. And I second staying on this thread. It’s the most and kindest support you will receive for yourself. And everyone here understands what you are going through because they’re going through it too. Good luck with your appointments

Thank you all so much for the messages, it's very containing.

We have been to the dr and they were very good. They've taken blood again to recheck everything, did blood pressure sitting and standing, listened to her heart and have given me a referral to go and get a heart tracing from the kids hospital. They have referred to the eating disorder team urgently.

I was a bit concerned at the start when the dr sent me out of the room to talk to her alone that she would convince him everything was fine, but from the summary he gave it sounds like she did agree things have got out of hand.

I've started with 3+3. Just had the most almighty row about asking her to eat two custard creams and drink half a glass of milk. It's frightening to see how this has taken a hold of her, she was a bit wild. The analogy of the ED being a kind of demon is helping me make sense of it.

I cope best when I have a plan I can be 'doing' so while I can see this is going to be really hard going, I completely get the rationale of why and how, and don't see the point in delaying starting this fbt until we see someone.

I think I need to speak to my work, it's already been 2 hours out of my supposed working day with the appt and the time taken to eat the snack.

I do have a very supportive DH, so we will try and do this together. I just can't quite believe we are here.

Thank you all again, I really appreciate the support, especially as I know you are all going through similar too.

@greydoorPleased that the GP understood the seriousness of the situation. Another resource you might find helpful is the Beat website and helpline. They do lots of online (free) training for parents and carers and have a wealth of information about things like talking to family dealing with Christmas etc.