Teen Eating Disorders support thread 3

[Girliefriendlikespuppies]

Thought I better get a new thread going!

Please come and join us if your teen is struggling with an Eating Disorder. We are a kind, supportive bunch of parents looking to support each other through the dark days of caring for a teen with an ED.

Hi all, we're now back home after a mixed few days away.

It's def bought it home how far we still have to go with dds eating. There's also been some worrying other behaviour (dashing off to the loo post food to 'wash her hands' )

That said there were some nice times as well, watching the sunset on the beach, went to a lovely zoo Ystd and dd was watching the keepers with interest (that's her dream job) and playing pool badly!!

Ystd was a tricky day as the journey home was hideous, took 5.5 hours when it should have been 2.5 😩 so her dinner was very late. She nearly had a meltdown but managed to contain it just about.

I'm worried she's lost weight though, she looks like she has.... weigh day is next Tuesday.

Today I'm back on it with the feeding, massive bowl of porridge and double cream for breakfast and a large portion of scrambled eggs (3 large eggs) with lots of butter and double cream added in on thick toast with butter and ketchup for lunch.

Dinner will be a high calorie fish pie.

I've also told dd she can't go to the toilet after food so she has to go before food or not at all (that went down well 🙄)

Scribbly that's good she has the diagnosis but I think like the others I wouldn't push her to accept it if she's not ready. My dd was offered CBT through the autism Camhs team, not sure how useful it's been tbh 😕 certainly not made a massive difference so far. I also heard that CBT isn't that effective for ASC kids as they can find it very hard to accept their thoughts aren't true....

Dd doesn't get any therapy through the ED team, I speak to the psychiatrist fortnightly for support and advice and that's it.

Hello all. Hoping I'm okay to post in here, even though DD2 who I'm very worried about at the moment is only nine

She's always been on the slim side, and tall for her age, but something seems to have flipped for her earlier this year (still eight then!) to make her start wanting to eat less and exercise more. She lost her spark and seemed down/withdrawn. Was concerned but thought it was just lockdown stress coming out and that things would get better when she was back at school and more normality.

Hadn't really twigged there was a major problem until her swimming lessons restarted a couple of weeks ago and I finally got a good look at how skinny she is, especially compared to the other kids. She'd been doing a good job of keeping herself covered up until then, and of course you don't notice the gradual changes when you see them every day. Started trying to get her to eat a bit more but she was resisting.

Finally decided I needed to weigh her and was absolutely shocked to find she is majorly underweight for her height. Contacted the GP a few days ago but appointment offered isn't for over another week, so today I discovered I can self-refer to the ED clinic and have done so. Hoping they'll get in touch on Monday.

Have made more efforts this week to up her food intake but don't know how far to push it before we get professional help. Just feeling so worried, guilty, shellshocked etc at the moment. She's so little, for goodness sake.

Hi @ItRainedForever welcome but sorry you have had to find us. This sounds like such a familiar story to me and carbon copy what happened with my Dd (now 13). Please don’t beat yourself up about not noticing. It is so hard to see the weight loss when you see them every day. I too got a massive shock when I saw my DD naked for the first time in a while at her lowest weight. Gosh it threw me.
When you first suspect an ED it is so hard to accept. And the guilt and fear are quite over whelming. All that is normal.
EDs are getting more and more common in younger and younger children. It’s a genetic based illness which needs a trigger. Losing weight will often be the trigger. Their brains trip into malnourishment and there you are. The loss can be deliberate (dieting etc) or accidental- in my DDs case she was concerned about ‘doing enough’ during lockdown down to keep up with her elite sport. Started compulsively exercising, lost weight and then decided a healthy diet was the best idea. Next thing we know full on ED.
Assuming she is not at risk of refeeding syndrome (very underweight with imbalances in salts etc- look it up) I would push food now. All the Ed team will do is tell you to get her eating 3 meals and 3 snacks a day and build up the calories. And then you will have lost time. Set a meal plan and stick to it. She eats what you give her no negotiation.
However you build up the calories fast or slow you will face the same resistance and more than likely extreme distress and behaviours so you may as well just go in high.
Take back control of her eating. Ban her from the kitchen. Use all leverage to get her to eat. She is young so in reality you should be in control anyway. Cut out all activity. Maybe consider taking her out of school if she doesn’t eat there. Take time off if you need to but get the food in, the quicker the better.
Beat is a great charity for ideas on how to help. Look up Eva Musby and watch her videos and order her book. Don’t worry about the why at the moment just feed.
The quicker she gets back to a proper weight the better, then they look at the why... please stay on here for help and advice.
Good luck!

Hi @ItRainedForever I'm a relative newbie too. Dd is 17 and it's taken a year for me to realise how serious things were and how thin she had become. I got such a shock when we went to the ED clinic and was told her weight for height percentage. I feel like it's all my fault and I should have noticed.
She was hospitalised and now home. Last week she got the all clear to walk as normal around the house and I'm paranoid that she will have nowhere near the weight gain of the last two weeks.
At least at aged 8 she won't try and take over the cooking like DD. Does she talk about her size / food intake? I teach eight year olds and most of them wouldn't really have a clue about what they were eating in terms of nutrition.

Hi @ItRainedForever - well done for noticing and doing something about it. It's the hardest thing to actually say 'we have a problem...'.

I echo @Lottsbiffandsmudge and @NCTDN. The reality is that the ED team will just tell you to make sure your DD is having 3 meals and 3 snacks, pushing dairy/fats, protein and carbs, and monitor her weight. They won't do anything about the reason she's got to where she is until she is at least 'average' for a girl of her height (that's what 100% weight for height means).

If you want to PM me with her date of birth, her height and her weight, I can tell you her current weight for height. That will be helpful because it's used as a measure of how 'bad' the eating disorder has got, alongside other measures such as how much weight is being lost, what the standing and sitting blood pressure are, and what the standing and sitting heart rate is.

<a class="break-all" href="https://www.google.com/url?sa=t&source=web&rct=j&url=www.hpft.nhs.uk/media/1425/foi-2363-30-11-2016-eating-disorder-service-junior-marsipan-risk-table-attachment.pdf&ved=2ahUKEwjX85vJpYHxAhUE2uAKHYm7AKgQFjABegQIGxAC&usg=AOvVaw3WU_WhQvFt4qCOtQFCagr9" rel="nofollow" target="_blank">This is the junior MARSIPAN (Management of Really Sick Patients with Anorexia Nervosa) checklist that doctors use to decide whether the child needs to be admitted to hospital.

When people have restricted calories severely, the most dangerous time is actually when they start eating again. The body adapts to the low calorie intake and the sudden increase in calorie intake uses up the electrolytes left in the body. It's called 'refeeding syndrome'. That's why refeeding plans are started gradually and blood tests are taken to ensure that the electrolytes remain in range. If they don't, supplements are prescribed. DD1 (15) was admitted to hospital in February and she went in to mild refeeding syndrome, so had to have potassium, phosphate, calcium and magnesium supplements for the first few days in hospital.

@Lougle that link doesn't work? Could be an interesting read!
DD wasn't prescribed any supplements so I assume that means her electrolytes were all ok then. We didn't get much info from the hospital TBH.

Hi everyone
Welcome @ItRainedForever - am sorry you're here but glad you've found us.

We had a tricky night a couple of nights ago -not so much on eating but the anorexia really kicked out at DH and I. It was strangely debilitating - it was our 'normal' for so long that I found I had no energy to respond to it... That said, I'm so grateful that generally recovery is ticking along and I do hope that me popping in and out is helpful in terms of a future 'stepping out on the other side..

@Scr1bblyGum and others who have talked about tackling the 'underlying causes' - we began to do that a bit once DD was weight restored but to be honest I think its a much longer journey. WR is (hopefully) giving her the cognition to be able to shush that underlying voice - she can't do it entirely by herself, she still body checks and asks us a gazillion times a day if she looks chubby, buys herself clothes far to big (jumpers are always baggy, trousers usually have to be taken in) but her cognitive function is recognising she is happier now and happiness matters. She's made a lovely TikTok about recovery being hard but being worth it and all about getting (her name) back and that (her name) deserves to be back and have fun and friends and be happy...

So I guess, I too stressed about tackling the underlying cause but have come to realise thats not a switch easily flipped - but getting them physically weight restored and cognitively re-ignited helps open up their worlds to an extent that the 'cause' gets squeezed a bit - it is still there but isn't dominant.

@NCTDN that's weird, it works for me. If you Google 'Hertfordshire MARSIPAN' it's the first link. It's a PDF.

DD1 probably tipped into refeeding syndrome for three reasons: 1. She was severely underweight (68% weight for height) and had been for some time. 2. Nurses didn't follow the eating plan - they just served whatever came up from the kitchen. 3. DD1 had got the message that 'DD1 eats, DD1 goes home', so she ate anything and everything they gave her, thinking it would get her out early. The consultant said that if anyone was going to get refeeding syndrome, it would be DD1, because she carb loaded to convince them she could go home!

@myrtleWilson I agree that once you are through the worse and the better says out number the bad it is so hard when faced with a full on AN episode again.
I have been thinking a lot about the ‘cause’ today. At dinner DD had a full on meltdown. That hasn’t happened in a while. She was inconsolable saying we were making her fat and feeding her up. It was a ‘difficult’ meal but one she has had before in recovery and has had all her life. In actual fact the meltdown was about her guinea pig dying and the fact she has a swollen foot when someone landed on it in a football match a week ago and so she is worried about having to rest more.
She still deals with difficult emotions by immediately wanting to stop eating. It happened last Friday when a training session was cancelled and she wanted to not eat snack as a result.
So I think the ‘cause’ is pretty irrelevant for us. We need to work on dealing differently with difficult emotions. I would class her (and me) as super feelers. Her feelings overwhelm her and she stops eating. She also uses exercise in the same way.
So what I really need from therapy is how to help her with the intense emotions. How to help her ride the waves and wait them out without defaulting to refusing to eat or exercising.
Anyway she ate her dinner in the end and had an ok evening. She has year end exams next week to and a final Arsenal trial on 15th which is make or break. Combine that with a dead pet and an injured foot and she really has a lot going on....

Itrained hello, your dd def sounds like she has tipped into an ED/anorexia, in some ways the fact she's so young will work in your favour as in theory it should be much easier to take full control of meals.

You will need to be fully in control of every food choices for her, 3 high calorie meals and snacks a day. You don't negotiate or bargain with her, what you say she eats, she eats.

She will kick off, scream, cry etc but you remain insistent although calm and empathetic.

If you work I'd get signed off (I've done this twice) and I'd keep her off school until she is well established and gaining a good amount of weight.

The EDSUK fb page is helpful for support as well, I think there's some parents with younger kids on there.

Thanks all. It's good to have somewhere I can talk to people who (unfortunately) know all about this stuff already. DH is on board with helping DD but I'm not sure he's really grasped yet how long the process might be or what's really involved. Whereas I've spent the last couple of days madly reading everything I can find.

@Lougle I think I've worked out her WFH percentage already. Looks like she'd be amber on that measure on the Marsipan checklist. I've never really kept a record of her weight previously so I don't know how much has been lost recently, but she's certainly a long way off the percentile line she followed as a baby/toddler/in Reception. Temperature seems fine and she's not been dizzy or particularly exhausted as far as I can tell, despite doing too much and eating too little.

@NCTDN I don't know that she's thinking of it in terms of size or weight. She's not articulated any 'reason' at all so far. I think she's a classic perfectionist and rule-follower with a lot of self-control, and it was about 'healthiness' to start with and has just spiralled. We had a lot of stress in the family at the start of the year, as well as the general awfulness of another lockdown.

At the moment we're going to focus on getting regular meals and snacks into her and adding milky drinks. She hasn't drunk anything but water for months so that's an easy source of some extra calories. She's been coming downstairs before anyone else in the mornings to have her breakfast, and I think she's been having very little, or maybe even just faking it with a bit of milk in a cereal bowl. We'll be getting up with her and taking charge of that from now on.

I think she's had a bit of a jolt this week too - she's been very compliant the last couple of days and eating more without much resistance, but I know it's likely to get much harder before it really improves. I WFH, self-employed, so keeping her at home for a while is definitely possible (though financially a bit tricky).

I'll have a look at the FB group too, thanks Girlie.

As she's so young, you might find that you can gently increase her calories without much fuss. It would certainly show the extent of the problem if you did meet actual resistance. There is a big genetic/environmental component to ED, as said above, so being low in weight in itself can trigger it, and lots of brain repair is done just by putting on weight, which is why CAMHS won't start therapy before the weight is on.

I think your approach, given her age, is absolutely right. Add in milky drinks (double cream is hugely calorific, so a good glug will help) using whole fat milk. Add extra oil/butter to meals, etc. She is likely to cope better with subtly higher calorie meals than a sudden increase in volume. You can get around 600-800 calories into a smoothie, for example. 3 side-plate size pancakes made with duck egg and double cream are 1000 calories.

Lougle this is where it must be easier with younger children I guess. DD is far too aware of what goes into every meal to sneak extra calories in.

Nice doctor from the Maudsley called me this morning and said she will take the referral for DD which is good. Gave me some advice, all of which I'm already doing but nice to know we're on the right lines. Was reassured that DD wasn't fainting or lethargic, but seemed alarmed at the weight I gave (as am I, obviously). Sort of hoping my scales are somehow off, but I'm not sure they are.

DD is still being incredibly compliant with eating more. She doesn't actually seem to be afraid of eating, as such, and I've managed to pack quite a lot extra into her in the last few days. Her weight for height is just so low, though, and I'm suddenly aware of how fragile she looks. Don't know how we've gone so wrong

Hey all, I’ll catch up with the thread today but just wanted to ask a few questions. DD is really struggling at the moment and is so very down. Her hair is starting to fall out. She has always been so proud of her hair as it’s beautiful and thick. She knows that the hair loss is one of the last things to go as is a couple of months behind. She is absolutely distraught about it.

And she is just so very sad. She says she has nobody to talk to anymore. She used to be able to talk to me but now she feels like she can’t as I am now the enemy and the one making her eat. None of her friends understand and she feels like she has nothing that she can tell them as all she does day in day out is eat. She is exhausted with it all and says she wishes she could just give up and that she didn’t have to wake up in the mornings. I am really quite concerned for her mentally and wonder if she would benefit from some medication.

How do you go about getting medication for your DC’s? We literally have just the weekly clinic session with the care coordinator. We don’t see anyone else, no doctors or psychiatrists. I can’t see any benefit for DD in these weekly sessions. When DD has told her in the past about her compulsive thoughts and the feelings of panic that wash over her when she’s eating the care coordinator just suggested deep breathing. How do I know if DD would meet the threshold for being prescribed medication to help her with her ED voice?

That's great @ItRainedForever. Eating disorders don't necessarily start with a psychological element. Sometimes the low weight is enough to trigger it. DD1 (15) was very similar. It took until she was 68% weight for height before they took it seriously.

@Rollergirl11 it's such a tough position you (& a lot of us are in). For my DD I stressed to the CMAHS nurse how DD felt. Is your coordinator a nurse specialist? If not why isn't she given access to a specialist nurse weekly?
I told the nurse that it is just not right that DD needs to go through this alone, all the terrible thoughts and "not wanting to wake up" is something no one should be made to go through without help. The nurse quickly got a camhs psychiatrist appointment and DD the nurse and I all attended. She was prescribed meds at the appointment and I collected the same day.

hope that helps?

I'm really struggling the last couple of days, it's relentless and heartbreaking day after day. But we must soldier on!

@Rollergirl11 should be seeing a camhs DR too due to the hairloss? At least to review her with a full medical?

@ItRainedForever welcome on board the thread. I'm so pleased to hear that your DD is letting you pack in extra calories. Make the most of it, the faster they return to their healthy weight the better chance of full recovery quickly.

This link just popped up on my twitter feed - online workshops from Eva M. She offers a discount code on the price per workshop...

Thought I'd share in case of interest to anyone

anorexiafamily.com/workshops-eating-disorder/?v=79cba1185463

@SoTiredNeedHoliday she’s a cognitive behavioural therapist and she was actually the person who assessed DD in hospital and gave the diagnosis. Initially I thought this was a good thing but she’s been pretty ineffectual and DD isn’t engaged with her at all.

@Rollergirl11 I didn't see you post, sorry. DD1 was in hospital and the consultant asked the psychiatrist to see her. I think you need to be explicit about your concerns and directly say 'I think DD needs to see a psychiatrist.'

Roller you need to ask to see a psychiatrist, I'd ring or email the team today. Outline your concerns re dds mood and thoughts and say you think medication is needed to keep her safe. On the plus side well done on getting the food in, your dds mood is sadly very normal at this point in the refeeding process.

Itrained great re getting the food in and that the ED team will see her. Has a GP given her the once over, she needs bloods, bp, pulse and an ECG. Can you say what her wfh is to give us an idea of where you're at? No worries if you'd rather not. Are you keeping her off school now?

Same shit another day here unfortunately 😕 weight check tomorrow which I'm not looking forward to. Dd up and down like a yo-yo in mood.

Roller has your dd had bloods done recently? Certain vitamin deficiencies can cause hair loss, is she taking a decent multivitamin?

@Rollergirl11 it sounds so tough for your DD. Insist in seeing a psychiatrist. It does sounds let medication could help. There are no ‘criteria’ that I am aware of.
During these COVID times it does seem like one gets assigned a key worker and that is the only person you see. Ours is a dietician not a psychologist or nurse but she is v experienced with in and out patient ED treatment so we have fallen on our feet... a CBT practitioner is an odd choice for a KW. It was our KW who got us a psychiatrist appointment when things were really bad.
@ItRainedForever glad you have been able to up the cals. Keep going and get in as much as possible as quickly as possible. My DD was never motivated by looks/ loosing weight etc she just wanted to ‘be fit and healthy’ which went so well.....not...