Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

Hi all, I posted a couple of weeks ago when my DD ended up in A&E after restricting and purging. It was so reassuring to have you to talk to as I have been so scared. I feel like we’re right at the start of this although I know she has been gradually restricting since way before Christmas last year. We are under the Maudsley now. She has done almost three weeks on Olanzapine and Sertraline and a meal plan. The first week was really tough but she is now following the plan pretty well. She is autistic so likes having rules and seems almost relieved that someone is making her eat.

We still have violent meltdowns after eating and huge guilt, and she still tells me she looks fat and “disgusting”. She was only just 12 last week so very young. But … she is now eating.

My question is can it be this straight forward? I know some of you have been battling this for years from reading your posts. It has surprised me how quickly she seems to have turned around and now I’m panicking I’m being lulled into a false sense that things are ok. Can you tell me about your experiences of the first few weeks and what I need to watch out for. And I’m so sorry reading some of your stories, these past few weeks have taken it out of me so the thought of managing this for years is awful, our poor children x

@greydoor - completely sympathise. DD isn't yet weight restored, still in the tight hold of AN but eating and weight has been stable (with much support and meal supervision). She will only eat the meal plan, not a single bit extra. nothing. It's all extremely rigid and no deviation. Been like that for almost 3 years. I sometimes wonder if that is it. It has been going for so long now and we have made absolutely zero progress in this area. I love food as does the rest of the family. It's Summer and we cannot even go for an ice cream as a family. I just crave little 'normal' things so badly. She comes along and just sits there holding on to her diet coke.

@fridayatlast I know of children and young people who have had a more straightforward journey. You said that she was relieved that someone was making her eat. She really is even if she can’t admit it. You need to build on that: she needs to keep following the meal plans and taking the medication. Also step on any new ‘rules’ when they appear and any backsliding immediately . With a fair wind, good ED services and hard work, hopefully she’ll back to a more normal life. I wish that for both of you 🤞🏻

@fridayatlast I think the key thing is that she is v young. So although her ED voice is loud, your's still carries authority. Plus you can remain fully involved in her care. Olanzapine can quieten the AN voice almost immediately. We found that with our DD (who was just 13).
Be prepared to need to increase the dose as her body becomes accustomed to it.
The AN will fight back, that is demonstrated by her melt downs. Tolerate them and remain calm but supportive. My DD says now that me saying that I was not going to let her fall, that I would do it for her when she couldn't, and that I loved her whatever really came through the noise in her head.
Weight gain is also not linear. I had weeks where she ate everything and gained and weeks when she didn't, despite eating the plan. Hold on to the overall trajectory.
It's tough when the plan has to increase. Each change is difficult.
My DD got sneaky and secretly exercised. Watch for those sorts of behaviours.
But it can be relatively straight forward (not that it feels like that!). After the weight restoration is when it gets tricky. How to build their indepdence with food. But her age is again on your side.

@fridayatlast i agree with the above. Her age is on her side and you can come through this, hard though it will be. If you haven’t done one of Jenny Langley workshops yet, then I would recommend it as she will give you the confidence to face whatever AN throws at you.
@EveryoneElse😊 We are limping along at the moment. Lack of friends is our biggest hurdle so if anyone has any ideas for how a uni student, out of her own year, can meet her tribe then I’d love to hear. Confidence has taken a massive bashing over the last number of years.
Good luck to @NanFlanders DD for results day 🍀

Thanks everyone for your replies, I can’t emphasise how much it helps to not feel alone. Not sure who I was kidding earlier, we just got back from our appt with the ED team where she sat curled in a ball refusing to engage in any capacity and wouldn’t even step on the scales. All she said was that she felt better when she was restricting and purging and nobody knew ☹️

@Shanghai101 is she into a particular type of music/game/whatever? There is very likely to be a society at uni for that thing and if there isn’t she can start one to draw in like minded people.

re: meal plan - I was having the same thoughts, that surely it can’t have worked that well that quickly, but then suddenly it didn’t. Routine is good, and builds structure, deviate from that or let them realise there is a chink in the armour and they will go for it like a laser. I suspect this is in for the long haul even though things are ok at the moment.

@fridayatlast It's such a rollercoaster, isn't it. DD started at 11 too and AN still going strong 3 years later. Olanzapine and AD definitely helped but only up to a point. We have the scale refusal and complete refusal to engage with the ED team too. Nothing helpful to add but it's not that uncommon. I am working on not getting too disheartened by every little setback.

Hi @fridayatlast my dd accepted my taking control of the food relatively quickly, she was 14 at that point and I can remember thinking this feels too easy.

However we definitely hit a few roadblocks along the way! Is your dd being blind weighed? I’m a big advocate of blind weighing as this was absolutely crucial in my DDs recovery and being told she had gained a small amount of weight early on set her back months (if not years).

Keep going with pushing through, you have to be firm but fair and work on distracting your dd when she is eating/has just eaten.

Also refusal to engage with the ED team is very normal as is saying they felt better when they were restricting (well they would as they’ve convinced their brains food is something to be fearful of!)

I personally used the ED appointments as a support for myself and didn’t expect dd to engage. She was occasionally blind weighed so I knew if she was going in the right direction.

It is normal for them to tell you they would rather die than gain weight, that they hate you for making them eat, that you’re a horrible mother and don’t know what you’re doing.

This is very normal and you have to accept it’s part of the illness and wait for the little moments when you see your child trying to break through.

Thanks @Glitterfarti, I’m hoping that she will meet people through a new sport she has taken up. She tried joining clubs last Sept but nothing stuck. She has always been anxious and AN has made everything ten times worse.
@fridayatlast the best advice we got was not to let the ED dominate (or at least for me not to let it show). So distractions after meals, not talking about food/AN or to have designated times for those talks so that it didn’t dominate and become her identity

Hi. Just read through this, all a lot to take in. Took DD to the doctor's this morning about a bad back, they weighed her and she is only 35 kgs, at 15. Have now been referred to the ed clinic. Had bloods done today which was an absolute nightmare. She has cried and screamed all day. She has been refusing to eat and lost weight since around the start of the year.

Hi @Iknowdinosorry to hear about the appointment, that must have been a really horrible shock. Did you have any suspicions about it? I can only speak for myself but I didn't realise what was happening for a very long time. Two weeks before we went to the dr to ask for a referral to Ed team, we had been there asking for a blood test because she was so cold all the time, I thought she was anemic. The good thing is that she has been referred, and you know a bit more today than you did yesterday.

some other people will be along to tell you what helped them, but this group was one of the main things that helped me know what to do. Mostly the early stages are about trying to restore physical health through eating enough. Often (and this is what we did) this is by calorie and fat dense foods. I packed as much fat and calories in as possible, and in that way you can keep portions smaller, which seemed to help my dd. There can be a risk of refeeding syndrome if someone has been consuming fewer than 500 cals per day, so you might want to read about that.

Family based treatment is one approach, and is the one which has the main evidence base for teens. However, it is extremely hard going, and it doesn't suit all families, and I know other folks in here have had varying experiences.

I remember the first few days and weeks reading as much as I could. These threads and Eva Musby's book which is a brilliant intro to fbt, you can order it on Amazon but many of the chapters are on her website to read for free. She has a YouTube page too.

the early days for us were filled with the screaming and crying you saw today. People with anorexia are genuinely terrified of eating, and in a state of intense fear when made to. We tried to get through this phase as fast as possible, with the aim of putting on as much weight as possible. So we kind of put our head down and just got through the screaming, and we started the rule of 3 meals and 3 snacks from the first day. We told our dd that she had no choice but to eat, we would sit with her until she had finished, and the next scheduled snack or meal would be placed in a queue behind the one she was working on. At that stage she mainly wanted to be left alone, so that was the early incentive to her to finish. But it could take hours.

if you have any questions post them here. This group helped us so much.

just to say thank you so much to everyone who replied after I posted the other day. It is so comforting to know other people get it, and also to hear about how others have got through similar. Dd is 14 now and just back to school today (Scotland). She struggles socially and puts a lot of pressure on herself academically like many of the young people we are all supporting.

When I reflect on how poorly she was I do realise we have come a long way, I just wish we were at the end of the journey... Thank you all for replying to me, it made me be able to pick myself back up and we have had a better couple of days. @Lottsbiffandsmudgeyes I think you're totally right about maturity and her not being able to really do it herself yet, and partly because Ed has delayed that maturing process. That's really helpful to make sense of it like that.

@fridayatlasti remember about 6 or 8 ish weeks after we took control of eating, there were so many improvements I could see - my dd was able to sleep more, she wasn't completely inconsolable after eating, she was getting more colour back in her complexion, she wasn't as cold. I made the mistake of saying to her "oh you must be feeling a bit better" and I can remember it vividly - we were in Tesco and she looked at me like she hated me and said "I feel so much worse and it's your fault, I felt good before and you have ruined it". I remember feeling so gutted!! Supporting someone with ed feels completely nonsensical lots of the time. My dd wouldn't engage with anyone at the health check appointments we were offered either. It did gradually improve as she gained weight. It's such a long game.

@wandawaveslove your gratitude practice. I've read some about this, and was at a fantastic conference ages ago where someone was talking about the scientific evidence around gratitude and hopefulness. I keep
meaning to actually practice this - I will try and give it a go.

@greydooryes I was worried but she refused to let me help her so I used the appointment as a way in! I was shocked at her weight and how much she should actually be though. Just out of my depth on how to help her so looking forward to support. Have been reading up today. A lot to take on especially when being screamed at half the day.

Sorry to hear you're having a tough time. Awful to blame you!

Hi everyone, I need to do a proper catch up but thought my story may give our new members some hope.
Almost 2 years to the day I was beginning to become concerned about DS eating and his restriction which came on so quickly. He’d always been what I’d describe as a fussy eater but now I know that is arfid, still unsure why the restriction started but anyway he lost so much weight so quickly, gp felt things were fine and to reassure me referred us to a paediatrician who’s wait was 6-8 weeks. I really feel without the knowledge of people in this group he would of collapsed or worse, we didn’t stop him being active as didn’t realise the implications at that time, he was stone cold and eating 4-5 grapes all day. He was so anxious and looked lost, he couldn’t put into words what was happening. I ended up walking into a&e I was so worried and we were admitted on the spot, he was terrified and that was the turning point of him eating again. He was eating his way home, we used to repeat it during most meals. The screaming and distress became so much worse when we had a meal plan as the calories were much more and every week it was increased. Fortisip was my best friend as he happily drank it, it was hard to hide calories due to the arfid and the distress during meal time made me question whether or not I was doing the right thing, something so ‘simple’ as eating shouldn’t be this hard or upsetting surely. Meals were thrown, awful things were said, food hidden, I questioned whether life was worth it. Our whole house was utterly miserable. Gradually meal times became less stressful and when activities and life could begin again, we used those incentives to keep going and to keep increasing as life IS worth living and the world such an exciting place, food fuels you to do these things. I feel it took us 12-18 months to get to this point, it feels so so long especially in those dark first few weeks and months when the ed is found out and rears its ugly head. But knowing it’s a long journey sort of helps prepare you that there is no easy fix and recovery has bumps in the road.
fast forward to the last 6 months and my happy, funny child is back, living life to the full, he came in from playing with friends and asked for an extra snack as he was ‘starving’ I never thought I’d hear that word come out of his mouth again, all fear foods have been challenged, some still now aren’t easy for him and he will try to avoid but we just say that’s it for today and it’s eaten. On holiday recently he had the biggest ice cream altogether as a family (this was a massive fear food) and I had a little cry watching him cracking jokes while eating it. He’s come so far, we all have but this really is the hardest thing I’ve ever faced. You too can turn it around, it takes so much patience and some days it doesn’t go to plan, try not to dwell on the negatives and start fresh the following day. He no longer despises me and instead I’m the best mum in the world and he’s pleased I’m his ❤️

@Proseccoismyfriend so lovely to hear. I remember you from those couple of years ago, glad to hear your DS is better.
@greydoor glad your days have got a little better.
@Iknowdino the early days are scary. The ED has been called out and will retaliate. I read everything i could get my hands on. To start the treatment before your appointment it can help to devise your own meal plan. I started with meals my DD had always eaten and then added in 3 snacks. Having it down on a piece of paper, almost like a To Do list helped my DD. We treated food as a chore, as medicine, that had to be got through, however horrible.
It feels so wrong to 'force' (well encourage, cajole, demand, distract) someone to eat. It feels so wrong as a parent. I reframed it in my mind. If she had had cancer I would have put her through awful treatments to get her well. And food is no different.
What helped us was distraction, olanzapine (you will need the referral for that), and complete intransigence around food, it was non negotiable. But we watched TV, played games anything during meals to help.
Then I learnt distress tolerance. Look it up on FEAST website. How to sit with her anxiety, anger, devastation, hysteria, but not take it on myself. It is the most powerful thing her illness taught me. I still use it now, and realised I had been magnifying my loved ones emotions by being almost too empathetic.... essentially say little except things like ' I can see this is hard for you, but food is non negotiable' or ' I am sorry this is so hard for you, I am here to support you in anyway' 'This food is safe and what you need, please eat' and then keep her physically safe.
Also I banned her from the kitchen, from food prep, from shopping and removed any decisions to start with. They cannot make good decisions.. I made the plan, I cooked the plan, I shopped for the plan, and helped her eat it.
Watch for purging, secret exercise.
Assume your DD is no longer trustworthy
It helped me to think of the ED as a separate entity residing in my DD's head (don't say this to her at the beginning tho, likely to piss her off!). So when she was very distressed I imagined it was the ED, and my DD was in there struggling to get out.
You cant really use logic with an ED sufferer. My DD says now that she knew logically that she was not healthy. But she was powerless to use that logic. So you have to do it for them. Having decisions removed is often somewhat of a relief to the sufferer, not that the ED allows them to say that, or even think it.
I also think that the meltdowns are 'good' I realised that if my DD was 'happy' she wasn't eating enough. When we had good days, it was because eg she had secretly run on her permitted walk... so I became that ED's worst nightmare. I poked it and prodded it until eventually after 18m it gave up, mostly.
As I said earlier, once WR it can be harder in some ways. They are physically out of danger, but not ready for eating 'normally'. When starved the brain is the first to be affected, thats why EDs exist. Weight loss happens, the brain is affected and those with a genetic predisposition get an AN. When weight goes on it goes back in reverse order. The brain is last to go back to normal. A long period at proper weight can be needed.
I'd say for my DD she only finally shook it off this summer, a full 5 years from WR. She had been well, but little behaviours still existed. Leaving a small amount of everything on her plate (wish I had not tolerated that at the start). It can be tiny, one pea, the bottom of a banana, but she still did it. And always ordering fish at restaurants. Always. As I said before, she ordered a steak this summer. And like PP said, I went to the loos and had a cry.
It was the single hardest thing I have ever been through. My DD doesn't talk about it. And won't engage with any reflecting on that period. I was warned by our ED therapist that this is v common in young patients.
She left 2 weeks ago to start a uni degree abroad, and play her sport out there. So I have had to let go fully. I think I will always be on guard though.

Such a wise post Lotts. We are 4 months on from the day she agreed to start eating through being threatened with not sitting her GCSE’s and no social life. Recognise so much of what you say. She won’t discuss it and gets irritable if I check in what she’s eaten when not with us. I won’t give up - I was far too complacent before not making that mistake again.

Lovely update @Proseccoismyfriend !

@Iknowdino The early days are the hardest. 35Kg is very little (of course it depends all hugely on height) but must have come as a shock. Do you know when the ED team will see you? We have been always told to attend a&e if 2 more days under 500 cals. She seems very thin and you said she refused yesterday too. I would hang around for a n ED appointment in a few weeks time if she is eating very little. AN can quickly become very dangerous and we were nowhere near as low is 35kg and had a few admissions. If she isn't eating or badly eating, please get her seen by a&e. There is a standardised set of tests (bloods, EGC etc) for anorexia. It's not an over-reaction.

Saying this here because I can’t say it out loud : seeing her friends getting their a levels and university places is hard. Another milestone missed.

Amazing post thank you so much. I'll have a look at everything.
@Proseccoismyfriendlofely update and great to hear from someone with experience.
@Lottsbiffandsmudgeshe isn't hugely tall but she is 5 foot 3 and adult sized. She did end up eating some spag bol and a piece of toast yesterday. I don't think she realises the seriousness, think she just thinks she is on a diet and I'm making a fuss of nothing!

@Iknowdino they don't use BMI in the world of anorexia but WFH weigh for height. It's a BMI tool which also takes ages into account. I have a calculator on my phone and put your DD's data you have given in - it's not that precise without knowing the exact date but it came back with 68%wfh. It's a very very low value (100% is the average weight for girls her age and height). DD was admitted when her heart was struggling with 83%wfh. I would badger the ED team to see her this week, chase up the GP for bloods. You need and urgent ECG (what happens, when they starve, the electrolyte balances in the blood get out of kilter, this will then impact the heart rhythm. Hence ECG being a standard assessment tool for patients with AN - it can lead to cardiac arrest etc. It's very dangerous). She sounds a lot more ill than you maybe thought she is. I would really consider taking her to hospital. Pack a bag. With this weight, she is likely to get admitted.

Wow that's really scary. Thanks for the info. Bloods should hopefully be back today they said. The took her blood pressure and said it was low but in normal range. Her actual birthday is end of January. Thanks for putting the info in for me!

@Iknowdinohi you’ve had some great advice already, I second everything lots has said and took the same approach with my dd. It is the hardest thing I’ve ever had to do but ultimately they have to eat or they die 🤷‍♀️

Your DDs weight is very very low, how much food is going in? Did the dr check her bp and pulse? I would be worried about her heart at this point and tempted to take her to a&e for further checks. She may need refeeding under medical supervision due to the risk of refeeding syndrome.

It is normal for the sufferer to minimise and deny there is an issue. She may tell you everyone is mad to be worried, this is a normal response to the ED being called out. I used to say to dd ‘that is the illness talking and it’s not true, you are very unwell.’

Its also normal for us as parents to minimise the seriousness of the situation, I did in the early days and used to say to myself well she ate a bit of dinner so it’s not too bad…

Restricting food is life threatening even if they’re eating up to 1000 calories a day, a healthy teen needs at least double this and your dd is going to need 3000-4000 calories a day to recover.

Do you work? You are likely to need an extended period of time signed off to get the food plan started. I took 6 weeks off but you may need longer.

Start taking control today, plate up her food and put it in front of her, she has to eat it.

You are likely to see some extreme behaviours surface as you start pushing for more food in. This is normal.

Do you monitor what your dd looks at online? Go through her phone and check for any evidence of weight loss videos, pro anorexia content. Also remove anything that counts calories or fitness.

Any concept toy may have of healthy eating needs to go out of the window. Healthy eating now is all the high calorie and high fat foods, crisps, chocolate, biscuits, cake are brilliant. Apples and grapes less so!

You can worry about her 5 a day when she is weight restored and well.

You need an ECG too. And bloods can change quickly. We went once on a Sat to a&e and bloods and ECG were ok. By Monday (2 days later), she was bluelighted via ambulance to hospital and admitted to the HDU as she was coding red on multiple parameters (she was still walking and screaming by that point - she did not look ill on the outside). Things can escalate very fast. so a normal eletrolyte blood test for someone with extrem food restrictions mean nothing for more than a day. When they are admitted start re-feeding, they take bloods daily as things can change so fast. Not trying to scare you but if she isn't eating at least 500 cals, please take her in.

Just wanted to add to what’s been said - ED are treated under the MEED guidelines on the Royal College of Psychologists website. You can find a traffic light system with parameters for dangerous findings and it’s all quite reader friendly. My DD was recently 68% and didn’t need to go to hospital but was on ‘sofa rest’ at home on a strict meal plan.

if your DD is eating very little, if she is dizzy/weak/faint etc or if her pulse is 40 beats or less per minute (you can get a little machine for about £20 that will do her HR and sats on her finger) or feel the one in her wrist and count for one minute - you need to go to a&e (by ambulance if necessary) If the ED clinic can’t see you quickly get her in to GP for vitals, we were seen weekly by GP prior to diagnosis.

Eva Musby and BEAT websites brilliant, try not to get overwhelmed, the only way out is through x