Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

@Glitterfarti we went down the private route but as pointed out previously it is ruinously expensive and even our private dietitian advised against it due to the long term nature of eating disorders. BUT I couldn’t wait for her to hit rock bottom and take the risk that she might have collapsed alone somewhere with no one around to help her (my daughter is older and didn’t get to the top of the CAMHS list before she turned 18. My advice to you would be to shell out £500 or thereabouts if you can afford it and see a private psychiatrist who specialises in Eating Disorders. They may work for NHS as well or are closely connected with NHS and can refer your daughter for an NHS hospital admission if they feel that is needed. At the very least they will thoroughly check her physical health and advise you on how to go forward.

And please buy a copy of Janet Treasure’s book “skills based caring for a loved one with an ED”. It is full of good parenting advice regardless of the diagnosis.

Can anyone help ? After my daughters initial assessment at the clinic yesterday I found out she self harmed all over her arm so I've kept her off school today
She's now refusing to eat
I've dished up lunch and she's sitting there refusing
She did the same with dinner
Now what?!
Her wfh is 91.7 and the nurse said if she gets to 90 it's no school?
Am I right in saying if she doesn't eat it's go to bed ?! As nothing else is working or getting though

Hi @summertimesadness24 - sorry to hear things are so tricky. I think it's probably worth saying what you are experiencing is quite typical in terms of our young people experiencing quite intense distress when we start requiring them to eat. Eva musby has some helpful videos, here is one about supporting eating. The bungee jump one is also super helpful

We basically sat with our dd for as long as it took to eat the whole meal. Trying as hard as possible to have a kind compassionate but firm approach (I failed miserably with this on many occasions too). I told my dd we would sit as long as it too took to eat the food, and when it became time for the next snack or meal we would line that one up too. My dd knows I am quite stubborn, so I said to her I didn't care if we were still sitting there at 3am. I know this isn't the best approach and not everyone would use this, but it did work for us. My dd mainly wanted us to leave her alone, and so we made sure she understood that the only way she could achieve this was to finish the food.

@summertimesadness24 Unfortunately, self-harm is rife with EDs. My DD's inpatient unit offered them the choice of holding ice instead, which DD sometimes found helpful as it hurts (so temporarily relieving guilt) without causing physical damage. On refusing to eat, our community team advised limiting to 40 mins for meals and 20 for snacks, distracting throughout and afterwards, so the whole day wasn't focussed on food (with ED thoughts shouting the whole time). If the food wasn't consumed in that time, we had to offer a food replacement like Fortisip, which you can get on prescription.

@summertimesadness24 at the beginning we would take hours over food including feeding her. We eventually got meal support at home where a member of the ED team would come out to oversee a meal. This helped us understand distraction techniques better. We were then advised to follow the same timings as Nan outlined. There is a young woman on YT called Roisin Mitchell who shared her journey in recovery and I learnt a lot from listening to how her mom managed meal times.

what Dd found helpful was to map out her day in 30min blocks from 7am to 9pm (this was in lockdown and she was off school) but it meant she knew she had distraction happening all the time - especially at her danger points. Dd also s/h and so part of the distraction activity for her was to keep her hands active so we played endless banangrams, took up macrame etc etc

It’s so tough on you and her @summertimesadness24 in my case any form of punishment did not work so anything you say has to be carefully worded so as not to come across as threatening. If you don’t already use it for work then look up motivational interviewing. Watch some videos and read up on what your DD is likely feeling and it will help you have understand how much distress she is in. It’s also worth watching Dr Hill’s Ted talk on what it is like for someone with an ED at mealtime and the awful thoughts of self hatred and guilt they have after eating. Distraction is your best friend with this. Play games, craft, watch tv etc

summertimesadness24

So sorry your dd is SH. You've had some great advice. I just wanted to add that When my dd was SH we had an appointment with the crisis team who came to the house and advised on how to keep her safe - locking away sharps etc - and gave ideas to distract dd, such as the ice, hairband to flip on wrist etc. We made a self soothe box with things like fidget toys, pot of slime, bottle of lavender oil, colouring book, photos of our pets, journal to record feelings, little box of cards with inspirational quotes etc. Hopefully your area will have a similar service as we found it invaluable.

@greydoor thanks for posting that video, I've found it difficult to listen and concentrate on auditory information but I really like the graphics, it's just how my mind works best! I actually enjoyed watching it. I've got her book. I'll have to have a look and see what her advice is for getting successful unsupervised lunches!

DD is lying and saying she's eating her lunch but I know she's lying 😞 does anyone have any advice? She's absolutely desperate to have unsupervised lunch, it's the biggest difficulty we've got now.

@Glitterfarti I've got no sensible advice sorry but I really feel for you, it's such a rubbish situation. The only thing I can think of is to complain via Pals. I thought your DD had talked about being fat, if I've remembered that correctly then surely it's not disordered eating?

@summertimesadness24 so sorry about the SH, it must have been such a horrible shock to find out.

Hello, please can I join. Spent the day yesterday at the ED clinic for my 16 DD. They are likely to put us in an FBT programme. I am trying to read as much as I can but feeling very lonely and worried, will my support and help will be enough to help her get better?

Much of what I have read is about putting weight in etc. but this isn’t a problem in DD’s case as she has maintained weight. She binges and purges and has some damage to her oesophagus. Our family life is quite complicated and difficult (DH is an alcoholic and she doesn’t want him to be particularly involved).

she has always had a bad relationship with food and eaten small amounts and food has been one of those awful parts of parenting I’ve never got right as I’ve always tried to balance positive messages with encouragement and offered home cooked meals etc but I have always felt I’ve never got it right so feeling guilty this is my fault.

has anyone got any advice (or just a hand hold) on FBT at home? We have yet to be assigned a clinician but she is on the urgent list.

Hi eish
So sorry you find yourself here.
Firstly, please try not to blame yourself - although we all understand the feelings of guilt. It's often quite hard to pinpoint what causes eating disorders but generally it's a form of control when the sufferer is having other issues such as depression, anxiety, dysmorphia, masking where there is ASD, bullying, friendship issues, school struggles or just a mix of things.

Secondly, you are absolutely the best person to help your dd recover, even though it probably feels very overwhelming right now.

My dd has Anorexia so the way you will need to do FBT will probably be quite different to my experience of it. Hopefully someone will come along here with more experience. I'd advise getting a copy of Eva Musbys book asap and looking at her videos on YouTube. Arm yourself with as much knowledge as you can.

Sorry to hear about your dh. You have a lot to deal with. I really hope this group can be of help and support.

Found this which was written by an ED sufferer. It gave me hope.

To those who are caring for a loved one with an eating disorder:

Thank you for saving my life. Thank you for never giving up. Thank you for fighting my battle when I couldn’t or just didn’t want to. Thank you for choosing recovery for me before I could chose it for myself. I am so sorry for causing you pain and fear. Please hear this: it’s not your fault.

I’m sorry I caused strain and fear for the whole family. And I’m sorry that you had to give me more attention than my other siblings. But I promise I didn’t do it for attention. I’m not doing it to get recognised or to be noticed. Trust me, I am ashamed that I struggle so much with food. I can’t wait until the day this is all over, and all of this is just a memory.

Thank you for sitting through all of the crying and screaming and still making me eat, driving up to school/work to eat with me, dragging me to doctor’s appointments. Ultimately I do believe that someone needs to truly want to recover before they can actually get better. But my parents kept me alive until I got to the point where I could want it for myself.

So I think most importantly, I would tell any parent whose child is struggling with an eating disorder, do not wait until that person is ready to get better, do not buy into the idea that until someone wants it, that there’s nothing anyone can do. When someone is drowning, you don’t wait for them to clearly say, “I’m having trouble swimming, could you please come in and help me?” You just dive in and grab the person, and you would try and get them out of the water (even if they’re kicking and screaming). You would encourage them to keep going, not to give up regardless of how hard they are fighting back.

Don’t let the fear of losing or damaging your child’s love for you keep you from fighting– that love will come back deeper and stronger when they are healthy, alive, and in recovery. It is not your child that hates you; it is the illness that has taken them hostage. Think of their disorder as a separate person; when your child is yelling, screaming, throwing things, refusing to eat, negotiating meals, begging for the scales, whatever it may be, you are not dealing with your actual child, you are face to face with their disorder. This hate comes from an eating disorder that is losing, so just remember, the more hate you feel from them in these moments, the better job you are doing. Stand strong and unwavering when you are confronted with the demons and struggles you and your child face every day, every meal, every snack.

It is so important to remember that your sick child is not your child. When I was sick, I was not me. Anorexia turned me into a lifeless, unpleasant, and unloving version of myself. It must be the scariest thing for a parent to look at their child but not actually see them; to just see them disappearing more and more each day, both mind and body. It’s crazy to hear people talk about the way they saw me slowly coming back to life through my weight restoration journey. They tell me how they could see it in my eyes, how they once appeared empty, but were finally full of life and personality again. Keep fighting so you too can experience this with your child.

Try, as much as you can, not to take any of what they say at the time personally. I never hated those that were trying to help, I just hated that they were trying to take away from me what I felt at the time I absolutely needed. I know that you haven’t got a clue what to do right now, whatever you say is wrong; too caring and you are ‘suffocating’, too strict and you ‘don’t care’. Here’s the thing about their eating disorder, it’s not them. Some days they have control of it, some days it has control of them. Their eating disorder is a monster which crept into your world in silence and has created havoc, but that monster can be beaten. It will be beaten. That monster is NOT them.

I always said that my parents have probably put in just as much work for my recovery as I have, especially at the beginning. Just as my parents did, you have to want their recovery before they can want it for themselves, you have to choose their recovery for them before they can choose it for themselves, and you have to be their motivation before they find their own. Recovery is not a simple, linear, or easy journey but it is worth it.

I hope this helps anyone in a similar position. I would also say (last thing, I promise) that hope is one of the most powerful things you can offer to someone who is struggling. Everyone around me refused to give up on me, even when I had given up on myself, and for that I am so grateful.

@Eyelashesoffire my DD is (mainly) back in school, she’s 15, she was desperate not to have supervised lunches, so as her 3 closest friends know about her ED there is an informal peer supervision, she’s told them she must try to eat lunch everyday. they all sit together and eat together, it works ok-ish, she says they are gently encouraging eg ‘don’t forget to eat your crisps’ type comments but not actually forcing her. For her this gentle peer pressure seems to work, she eat 3 or 4 out of the 5 items she’s suppose to have and doesn’t bin stuff so I at least know what hasn’t been eaten. Do your daughter friends know, could something like this work?
@summertimesadness24 sounds like your having a shitty time, we’re all here to listen if that helps. how’s today?

Summertime there are different schools of thoughts on what to do in cases of flat out food refusal.

Some families 'sit it out' that means the child has to sit at the table and is not allowed to leave until the food is eaten, even if it takes 10 hours. Or they will physically follow their child around d with the food abs the child will not be allowed a minutes rest until the food is eaten, will not be allowed to sleep/watch telly/go on their phone. Life stops until they eat.

This does work well for some kids and you tend to only have to go through the pain barrier of doing this once or twice before they realise you won't back down and it's easier just to eat the food to get you off their back!

For other families having set times for each meal and snack and then setting a timer for say 30 mins to eat it works. If after 30 mins the foods not eaten they get presented with another alternative (ideally higher calorie) if that's refused you pack them and the food up and head to a&e.

Hopefully they will then eat the food but if not you see the a&e trip through and make sure all the checks get done.

Once the foods down in front of them, change the subject to anything else other than food. Do not discuss the food, do not answer any questions related to the food and keep replies very neutral

'This is exactly the right amount for you'
'You can trust me, I've given you exactly what you need'
'Pick up your fork and take a mouthful, how's your friend so-and-so getting on? Did I tell you I saw her mum last week?' Etc.

My dd responded well to 'once and then' so once you've eaten your snack and then we can go to the park/play a game/go to the shop.

I also took my dds phone off her initially to get FBT established, this help as an incentive to get her eating but also I think helped her mental health overall as she was looking up all sorts of crap on it.

Eish** sorry you've found yourself here. Is your dh still in the family home? Does he drink in front of your dd? If so I think you might have to seriously look at whether that's going to prevent your dd being able to recover. Living with an alcoholic is very stressful due to the unpredictable nature of the illness.

With binge and purge FBT (3 meals and 3 snacks, prepared and supervised by yourself) is still useful as it will reduce the desire to binge.

Re the purging I think strict supervision for at least an hour after meals and snacks, no unsupervised toilet trips, doors open policy and lots and lots of distractions after food.

Hey everyone. Welcome to @eish and @Wallrat - sorry you've found yourself here, but you're in the right place for support. I find this group so helpful, all the experience, tips and reflection really helps. @NCTDN thank you for posting that, it gives me hope too.

How are you getting on @summertimesadness24? Hope you've had an ok few days. It's pretty hellish at the start of 3+3, for us my dd's behaviour just seemed to spiral out of control. She started hiding food (found prawns down the side of the sofa one day 😳), she spent a lot of weeks sort of posting food in between her lips so any excess sauce or oil would be left on them, and then wiping it all up her arms or on any soft furnishing around, 'accidentally' spilling food, pocketing food in her cheeks and then hiding it in her room, the list goes on. She was also absolutely wild, screaming and shouting, swearing in such an aggressive way. I found it exhausting to cope with the early weeks and was signed off work.

Things have improved though, my dd will eat what we ask her to usually, and although we still see some of the behaviours, it's not all the time now. I see glimpses of her in between a lot of very flat and withdrawn mood.

Unfortunately we have had a bit of a grim week - people are right when they talk about recovery not being linear. My dd came home from school on Tuesday in floods of angry tears - someone in her class had refered to her as being 'heavy' . I don't know what the context was, but it teleported us right back to the start. She was wailing and screaming about being fat, was just impossible to interact with, blamed me for everything and the whole thing lasted for hours. We have called her head of year every day since to try and get some discussion with him, but not heard a peep. Honestly, I felt like just going down there to grab whoever had said it by the scruff of their neck, I was so cross that some little shit (sorry, excuse my language) would be amused for 30 seconds by something, but the impact on my dd, and on us as a family is devastating and dangerous. And predictably it all happened just before a really important work meeting I had to call into - I had to plaster my face with makeup to hide my bright red post crying nose and I was just completely unable to manage myself. I just don't know how to protect her from this sort of stuff. For the first time since we started I started to think we probably do need to find some kind of therapy to try and help her build some kind of skills to cope with things like this. We are still on the camhs waiting list. But although we are still waiting I should give myself a pat on the back though, apparently.

It's all so exhausting. I want to run away. Anyone want to come?

@Girliefriendlikespuppies thank you for your essays. Yes, DH does still live with us. Evenings are the more difficult time but generally he just sits in a room and watches tv whilst drinking.

I think what you say is very accurate as to the treatment they will be suggesting.

Oh greydoor 😕 thoughtless comments aimed at our children are so damaging, we've had a few similar incidents with the same fall out. I have found my dds resilience to these sorts of things has got better and the upset more short lived recently. It's so frustrating though.

Eish I think I'd be seriously thinking about whether the relationship with your dh is salvageable tbh. Trying to manage a dd with a serious ED (bulimia is particularly dangerous due to the affect it can have on the body's electrolytes and I would be scared stiff of what an oesophageal tear actually means) with an alcoholic in the home will be very difficult. Sorry if I'm overstepping.

Greydoor my dd did all of those pocketing and smearing behaviours, it's mind boggling really how they think that smearing a bit of sauce on their t.shirt will make any difference to anything 🤯

That's good to hear @Girliefriendlikespuppies - I'm hoping we can achieve the same. I can kind of see that part of the problem / source for dysphoria seems to be that she has a friendship group, and a class who are uncharacteristically short. So she probably does feel much bigger than they are, because she is quite tall (although I suspect she isn't far off 50th percentile for height).

I find it so fascinating how they all develop such similar behaviours - yeah it's quite mind boggling the lengths they will go to to avoid any calorie at all. In the early days before I was more vigilant she would walk away from meals absolutely covered in sauce though, it probably was quite effective in cutting out some calories. It really lingers on her clothes though, despite washing, and so it has the effect of making her smell of food. I can't imagine anything worse for someone with an...

Oh @greydoor that sounds so upsetting for you all, I'd want to hunt them down, teenagers are very thoughtless sometimes. Hopefully that's the last of it. How is she feeling today? How long are the CAMHS waiting lists in your area?

DD is in a shocking mood lately, the worst I've seen, just weeping and moping around. DH tried to take her out this weekend to something she'd normally like and she had a panic attack in the car. We've had to try and get her out for a bit of a walk every weekend, I'm worried about her developing agoraphobia, she never wants to go out or see her friends. Is this normal at 99wfh?! I was hoping it would improve, I suppose it's not linear 😔

I'd love DD to engage in some kind of therapy but she's very resistant unfortunately. She had 18 mths of counselling before the ED and although she did like the counselor I'm not sure how useful it was. I do think it helped her stop wearing a mask in school. Also it did help that one sweet girl said DD had a pretty face without the mask, I could hug that girl whoever she was!

@NotAllGood your Dd's friends sound lovely. My DD seems to want to keep it secret but I'm sure some of her school friends have noticed. I'm not sure she's ready to go it alone even with some friend support.

@Wallrat how are you doing?

Good morning,

we had a weigh in and a 100gr drop. However, she grew 3cm recently so ger WFH went down a few points (87ish now). she was told to eat more to make up for the growth and got angry and violent at home about it.

school dropped one on us. Staffing issues so they cannot provide proper meal support anymore. This was a lifeline but I am sure she is not eating in school (at least not the full lunchbox ) otherwise she would be gaining. I have no idea what to do now. Going in myself or keeping her at home are not possible as I have to work. what do others do if they are not sure what's going on in school food wise!

This morning, she attacked me violently again. thew cutlery in my face, whacked her phone over my head, big kick in my pelvis. and fruity language. I just asked her to eat her usual breakfast but she is trying to cut down portions left right and centre and I wouldn't let her. that cause the outburst.

I have self referred to social services as I just don't cope with looking after l both DDs anymore. DD1's school upgraded it as urgent but social services said there are many month until we get an assessment and even if we get support, that needs to go to a panel. If anything is coming out of that one, it won't be before the autumn realistically.

I don't know, but I really don't think I can help DD to get better if I have to do it all solo at home without any discernable support from the outside. she is not engaging at all and when I push things, all I get is violence. People say, yeah, i rattled the ED but it doesn't make her eat. she gets so aggressive and violent and completely melts down and she goes to a different place where I cannot reach her at all .

@Curlyhairedassasin i am so sorry to hear how hard it is and how little help you are getting. I discovered fairly recently that our area has an ETT (enhanced treatment team) who come to your house at mealtimes and support your DC. I think they have to be well enough not to need hospital treatment to qualify but not sure what the cutoff is. It might be worth enquiring under the circumstances. Let someone else do the ‘rattling’ for a bit.
Regarding the lunches, I don’t know what to suggest but I would be very disappointed with that decision, is it something that should be brought to the governors given that their role is the well-being of the students first and foremost.

@Curlyhairedassasin My DD's school said she could have a room to eat with friends and a teacher would pop in and out, but she refused. Luckily DH and I can work from home a lot of the time and she lives near enough to come home for lunch. When sshe or we can't do that , we have facetimed. Would that work?

not ETT service here @Shanghai101 .

Thanks nan I had not thought about facetime snack. Maybe worth a thought. I know school block out the internet but will ask about it to see if there is a way.

Hopefully by putting forward suggestions such as FT, it will prompt them to also think about what they might be able to suggest to help