Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

Kelkee

The system there sounds appalling but to be honest many GP's here are awful as the first point of contact. They get something like 2 hours training in ED's.

Most ED sufferers 'eat' so that reasoning is bollocks. My dd is recovering and eats well but she still has Anorexia and needs me to make her food and be constantly vigilant for relapse. Left to her own devices I've no doubt she would lose weight rapidly.

I hope that now you have an appointment with an ED clinic you will find it gets taken seriously. However, unless your dd is poorly enough to be hospitalised, you'll be the one who takes on her treatment at home with the support of her ED therapist. It's very likely you'll be advised to take full control of her meals. It is a very hard process but in time it becomes easier. My dd has said she felt relief once I took control as she didn't have to think about food.

Fluoxetine has been a great success for my dd but she didn't start until she had gained a lot of weight back. There is a medication that can be taken in the early stages to help with distress around eating but I can't remember what it is. Hopefully someone will come along with the information.

It really is so hard to access support.

Unfortunately you have to fight every step of the way. The ED clinic our ds (18) was referred to has frankly been useless but fortunately he's been able to improve by himself, with our help, and the dietician who speaks to him on the phone has held him to some accountability.

He has been taking antidepressants for about a month now for his severe ocd.

It's been hugely up and down mentally for him, and still is, but in terms of his eating he is putting on about 1-2kg a week.

He's put on nearly 10kg since June and still has about 4kg to put on before he's just in the healthy weight bmi.

It's frightening to see photos of him even a few months ago.

Now he's eating more and putting on the weight (he's still exercising too much but he won't stop that, the dietician said as long as he's putting on the weight it's okay) many ailments are clearing up, eg;

He's found his appetite, doesn't leave mouthfuls of food, his hands used to react terribly to the cold and he had cold sores, that's massively improved plus his muscles are gradually appearing again. He also feels stronger and looks so much better.

Still a long way to go, both physically and mentally, but there are steps in the right direction.

We hesitated over medication for ages but don't regret it - he had no other option and I strongly believe that he would have had a physical and/or mental breakdown otherwise.

@mirabella84 that is so true about looking at photos of a few weeks ago and feeling a bit haunted by the changes in your child!

We had obs today at the ED clinic, still no diagnosis. Static weight and 1cm in height so now 83% wfh, still on half days at school :( Things came to a clanger with the pastoral support so I’ve written war and peace in an email to the head today. Feel a bit nauseous really that I’ve done it but apparently the school “didn’t realise it was serious”.

mirabella84
Your ds is doing so well. Hopefully his mental state will further improve as the weight goes on. I started to notice small improvements in dd mentally day to day as she got close to weight restoring. It felt like she was coming back to us a little bit more each day.

Glitterfarti
My dds school was rubbish and apparently dd was their first ED case which is hard to believe in a school of over 2000 pupils. I spent so much time trying to educate them and trying to get decent support and they failed her over and over. It felt like they just wanted her to leave so they could wash their hands of her. She left in 2022 and I still get upset remembering the struggle. I hope you can get better support as it's so important. I can't understand why you have no diagnosis as it's obviously an Eating Disorder and there's to advantage to anyone not to have a diagnosis. Sorry for the small loss. It's hard. Keep going x

@Kelkee sorry you find yourself here, I really hope you manage to get some help & support. It's such an exhausting, dark journey. Feel free to come here anytime, there is so much knowledge here and it's been such a lifeline to me.

@mirabella84 I'm really pleased for you and your son! He's doing amazingly well I really love hearing positive outcomes and one day I hope we all get there.

@Glitterfarti sorry about the loss, we had a small loss too last week and it really crushed me. Definitely kick up a stink at school for some support, you'd think they'd be doing what they can to keep children in school with as little disruption as possible. Keeping my fingers crossed for you.

We have weigh day tomorrow, I'm feeling nervous. He's fought me so much this week, trying to leave little crappy bits, pushing food around the plate, the potatoes are too brown and can't possible eat them 😔 then at pudding tonight he was having matchmakers I'd put the amount on a plate but once he'd ate them all he came and grabbed another 10 and kept going. He doesn't want to avoid foods he enjoys anymore and he can't wait to get his life back, I'm still in a state of shock. I didn't want to make a huge fuss but I've encouraged him and said how proud I am, he needs to do this everyday and some will be harder than others but he can do this 💪

Just catching up on lots of new posts. Welcome to all. In my experience, there is lots of support and no judgment here.
@myrtleWilson delighted that your DD is fully recovered. Sorry to see you go but I imagine you now have to look after yourself. Thank you for the hope and for your generous sharing of knowledge.
@Glitterfarti we had a similar scenario with anxiety. I don’t want to worry you because it might not happen in your case but the breakdown of a relationship caused our DD’s ED to spiral out of control. Hopefully, forewarned is forearmed.

@BagpussSaggyOldClothCat so glad to hear that you are in a more settled phase. Is this the maintenance phase? Do you know how they move out of that into recovery? My DD is older and if we need to be present most of the time to assist her then it will limit what she can do in terms of study/travel. We are still very much in the WR phase but I am always looking ahead and hoping

An update around my DD. We have hit 100 % and weirdly I have noticed that now we have moved out of the warzone my anxiety is at a peak. I feel v insensitive to say it as she is now in WR and we are not in the objectively scarier stages of her illness but I feel terrified all the time. Terrified to hope, terrified to let go of the fear. Did anyone else experience this weird unexpected reaction once the goal was in sight? How do I navigate this?
I also want to add I find it v hard to get rid of the rage I have for the 3 therapists who dismissed my DDs disclosure of eating issues leading her to become dangerously ill before she could access help. Our GP on the other hand, phenomenal. Why are EDs dismissed so often. Even my DDs 'good' school are v uninformed about them despite my DD not being the only patient at our ED unit from there...

Well done @ReineDeSaba reaching 100% wfh. I'm not sure that I can help as I also live with the fear. Our DD was discharged from the ED service at 106% in January 2023, DH has compartmentalised those early days of FBT (the warzone as you put it) and works on the fact that we are past that stage. Like you I live in fear of slipping back - a missed snack sends me into a tailspin. We do not have the comfort of DD being weighed, however I know that she is not 106% still and now at college I worry about her independent eating. We have all the teenage rage and I too am angry about the GP dismissing DD's initial weight loss as her 'growing up'. I too would really want to know how to navigate my emotions and not live in crisis mode every day - some have the mantra of keep pushing the food, and that sometimes works for me - but it still lives with me how sneaky this illness is and if it has hold of DD at college or when she is eating on her own. There are those with more experience who could help show us the way to cope .

@ReineDeSaba - we are in the same position that DD isn’t getting any support at the moment as she hasn’t been deemed ‘low weight’ enough. This has led to her saying that she is focused now on losing more weight just so that someone will listen to her (very literal / black and white thinking as she is autistic). By the same token, she doesn’t want help as that means that she will be made to put on weight.

We had our first meltdown over weight last night. She came home after managing just half a day of school after the disastrous ‘counselling’ appointment where she was told that they couldn’t help her, and ate a small ice cream. Then she punished herself for that with an hour of exercise in her room (I had no idea), trying to make herself sick (which didn’t work). This then lead to her pulling her clothes rail over and ripping her posters off the wall. She is saying that she would rather die than put on more weight, and still she’s not ill enough?

@Nomoreplease23 and @ReineDeSaba I totally resonate with your struggles at the 'right end' of this illness.
My DD hit 105% summer 2021 and it's taken me 2 years to let go of the constant anxiety. And it hasn't totally gone and probably never will.
I think just hitting a number wfh wise isn't the whole story. They need to learn to be independent too and respond to hunger cues so I don't think the carer can step back as soon as a certain number is hit. My DD's recovery has progressed in the 2 years since WR and she is now in a v good place. Even so I was freaking out in the summer, on holiday, when she wasn't eating snacks etc. When she is in a routine with school and training she is v good at eating 3 and 3 but on holidays it slips. She prob doesn't need as much food as she isn't training..
But I finally had to realise that my pestering and worrying about 'missed' snacks was hampering her recovery and independence. It was also eating me up keeping a permanent eye on her and mentally noting her intake.
In the end I had to employ the CBT strategy of facing my fear and collecting evidence that backing off didn't result in a massive relapse. It feels like a risky thing to do but I had to force myself to do it.
However I wouldn't have attempted that as soon as she had hit 105%. She wasn't ready either. I guess just living with WR and occasionally letting something go (missed snacks because out with friends or less meal eaten as she didn't like it - usual things kids do) and seeing that she didn't spiral backwards helped.
I also had to accept that she isn't motivated by food. She isn't a foodie. She does actively enjoy some things but she doesn't seek treats out. Food is fuel to her. Unlike me! That took a while to get my head round!
And yes my DH found it easy to move on. I probably have PTSD but that is my issue not hers.
She reminds me frequently that she is 'over all that' and I have to believe her.
So far so good.

@Kelkee fingers crossed for that corner being turned

@catsback it's horrendous to see your child putting the ED over everything. I wish people would understand it is a v strong mental distortion as much as a physical illness. I hope you can find a way to access more help.

Thank you @nomore and @Lottsbiffandsmudge for sharing, it really helps me not feel alone in my expeience. I realise I feel guilty and thrown because we are on paper in a much better place than a year ago but unsurprisingly I don't immediately feel magically relieved/better, the way I had imagined. I think there is possibly something around feeling more anxious than DH about it all because deep down I imagine more judgement of me than him in how our children fare and feel more shame around it. The CBT sounds helpful. I could do w some counselling but work and hospital and mealtimes and holding everything still seems to fill all my time. I am doing my best to do external calm for DD despite some inner turmoil. At nearly 17 restored weight buys her a lot of (scary for me!) freedoms. It's hard for my mind to not drift back to those early sneaky days...

@Nomoreplease23 @Lottsbiffandsmudge @ReineDeSaba totally agree. My DD is at 99% now and she is not even close to having a normal relationship with food. There is absolutely no way we could take a step back at this stage, it would all crash down.

Oh we are having a bit of a hard week. Weighed my dd and she has stayed the same, and her mood has been absolutely awful all week, she has been just horrible, mainly to me which I've found really upsetting this week (not showing this in front of her).

I found some hidden spitted out food in her room, as well as a couple of towels which stank of vomit hidden behind her wash basket. Grim So clearly that's one of the ways she has avoided gaining this week.

I wanted to ask about the timings for supervision post meal and snack - is there a scientific reason why they are an hour? I can't imagine how I'm going to get any work done if I'm supervising her for an hour every time, as well as the time I'm spending supervising her eating. My job is quite meeting heavy (online), but it's not stuff she can realistically listen to.

I also wanted some advice on how to try and repair our relationship. She really does hate me, she is now at the point she won't acknowledge I'm in the same room as her, much less give eye contact or reply to me. Apart from the times when she is screaming for me to fuck off and die. Any thoughts for how I might try and repair this? It seems completely un-genuine to just be trying to be nice to her and chat when she is completely blanking me or saying she wishes I was dead.

I really hate this. I am having another day where I wish I could run away. I'm not cut out for it 😢

Sending you a hug @greydoor hopefully someone with more experience can come along with some tips. From what I've read her hatred towards you is because you are the one challenging the ed more, I'm regularly told he hates me and wants me to disappear (not as much as you and I get cuddles afterwards, but in those moments I really feel as if my heart has been ripped out and stood on).
We stayed the same this week and I caught him trying to flush raisins down the toilet earlier (so pleased we never fixed the squeaky seat or he might of got away with it).
I hate this too, hate what our lives have become and wonder if we'll ever get back to normal

Sorry for the difficult weeks. It's so demoralising when they don't gain- I remember it well. But a stable weight is not a loss, which is good
Tbh I am not sure you can 'mend your relationships' when they are so unwell. Just hold in your head that they are at the mercy of their own personal terrorist, and it is this terrorist that hates you.
The best advice I can give is to keep going. Set boundaries and stick to them. Like dealing with angry toddlers. Firm but compassionate. Flaming hard to do. Once the weight goes on things will improve. They prob won't remember much once recovered. My DD doesn't.
I am not sure on the hour rule but I think it's to allow digestion to start? Could she sit in with you if you wear headphones for the meetings? I think you will probably have to to stop the purging, which is so dangerous not just because it jeopardises weight gain but also throws electrolytes out etc.
So 'keep calm and carry on feeding' is the simple answer. Very hard to do though

@greydoor my understanding has been that the hour 'rule' is to prevent purging. Our DD hasn't purged at any point as far as we know but in the early days we had to sit for an hour afterwards to try to regulate her again as she would be so distressed. It was so time consuming. Trying to work around it is really difficult, there aren't enough hours in the day.
I found it v challenging and hurrful to be the object of hatred when I was trying to accommodate all this but I worry most about the relationship w her sister than me. It has taken a beating from this journey

@greydoor sorry to hear you're having such a hard time, from my experience it does improve but you are in the eye of the storm now. At the beginning and for a few months DD's behavior was frightening, she physically assaulted both me, DH and DS, destroyed the house, the Police were involved, she ran away, climbed out of windows and she didn't speak to us for weeks - she sat in the back of the car with headphones on blanking us. Being told to die and off was common. This behavior is quite usual (one parent warned us about this) and it is so difficult to remain calm (we didn't always). Today she attends college, is now at a fireworks party and she asked me to book concert tickets for me and her next year. It does improve, the light at the end of the tunnel slowly gets brighter. Our relationship has changed, I don't know if she remembers the hard times but I would expect the relationship to change from 14 to 17 years old anyway.

Recovery is a long process, they are addicted to the ED and we have to slowly wean them off their reliance on their disorder by feeding and monitoring them. The hour wait is for the digestion to start - I have read real life stories where bathroom and bedroom doors are removed, I thought that extreme but sometimes 'needs must' to show the ED that you are stronger and will do anything to confront the monster controlling her.

Thanks so much everyone, those messages were a lifeline last night, I was really struggling.

I couldn't even think about how to keep going so thanks for reminding me about what I CAN do.

@Lottsbiffandsmudge - I can do firm and compassionate. That feels much more genuine and realistic. And of course, good idea about using headphones on my call! I can do that!

@Nomoreplease23 and @ReineDeSaba - thank you for the support. It is so hard being the object of hatred, I agree. Things had already started to become tricky in our relationship pre Ed with typical teen stuff, although I suspect that was also Ed starting too... but I can keep going and hope we come out of the other end with a relationship that is ok.

@Proseccoismyfriend sorry you're experiencing this too, and thank you for the hug. I think I'm going through a kind of grief process for our old life. I feel like I'm having to come to terms with the fact that's not our life anymore.

My younger child was in the house yesterday when things were horrible, and we went for a walk together last night and I was telling him that this was just a hard bit, but that dd will recover and one day we will look back on this. Think it helped. Wish I believed it more!!

@greydoor I think our girls are similar ages (11). Thankfully hormones haven’t hit properly here yet but I have an older one and remember reading an analogy for normal teens which makes a lot of sense - they are in a life ring and you’re holding the rope on the shore, they will fight and stretch and struggle to find the edges of their boundaries but just need to know you won’t let go of the rope, no matter what.
Theres also a letter you can find online written by a therapist from the pov of a teenager to their parent called “what your teen needs you to know” or something like that…
Add in ED and it goes stratospheric! You are doing fine, like labour, it will end and you just have to hold tight and roll with it. Sending love and solidarity!

@greydoor glad you're feeling better today and the messages helped. You've had good advice. I just keep a mantra in my mind, this is the ED. I have a lot of practice being shouted at when I'm at work , which weirdly helps! I just focus on staying calm and kind. DH finds it harder but we swap out when the other has had enough, do you get any support from family?

We've been trying to get some 'quality time' with her. Which at the moment is watching MAFS together. It's quite dreadful 😬 but a good opportunity to talk about rubbish relationships and what you shouldn't put up with!

For us, yesterday's weigh in was positive, though she had loaded herself down with things in her pockets 🙄 which DH retrieved. She's back to 92 WFH. But still a long way to go. Our saving grace at the moment is that she wants to go to school. So that's our leverage.

I've got some questions -

I'm concerned about the effect on her younger sibling. Any tips to help him? He's 10.

I also have a question about negative influences. She has a school friend who is exceptionally slim and ate like a bird when she came over a few months ago. We're avoiding any meals with her now but we can't separate them at school.

I also looked through her phone yesterday, this is an agreement we have as I pay the bill. The dodgy Pinterest board was deleted (calorie burning ideas) as we agreed, but can you 'hide' Pinterest boards? There were 65 browser pages open, all YouTube. Mostly related to her interests but I can't look at them all in detail. Any tips on what to look for? Snapchat is a mystery to me but a lot of potential for dodginess. She's getting these weigh in ideas from somewhere.

@Kelkee I'm so relieved and pleased for you, sounds really positive.

Sorry not to reply to others, my brain is a bit fried. But I am reading every post and sympathising with the difficult times and cheering on the positive news. It really helps to hear from others in a similar place.

I saw this on Facebook

Learning to “speak” ED

I’ve been seeing a lot of posts lately were people talk about the “no” foods that their kids “won’t eat”.

I want to tell you a story:

When my daughter was sick, it was like learning how to speak a secret language. It was like learning how to read her eyes and her energy while the words coming out of her mouth were the opposite.

 For example: one time we went out to eat and ahead of time my daughter said “mom, when we go to the restaurant I will eat whatever you get, but I don’t want french fries. Please anything but french fries.”

I could just feel it in my guts that my real daughter wanted french fries and the eating disorder was telling her that french fries were absolutely unacceptable. So when the waitress came by and took our order, I ordered french fries.

My daughter cried and whined and all of it.
But she ate them.
From that moment on french fries were a regular in her diet. Months later she would say things to me like “mom I remember when you got me french fries I wanted them so bad and it was such a relief.”

That’s the thing with this disease. The eating disorder does not let them tell their truth.
It forces them to react and respond the way that they do. Because if they don’t, the eating disorder will torture them even more. Then in their mind, they can at least argue with the eating disorder that they “tried” to get out of it. Their “mean mom/dad etc” “made them”.

It is all very counterintuitive. It is very very difficult to feel like the “bad guy.” It feels like we are furthering their torture when in reality we are doing exactly what it takes to beat ED.

@mum2three48 thanks, it's summarised and clarified what someone told me a while ago. It explains why DD will eat things "under duress" and actually look like she did want it. Our ED team are very strong on 'holding boundaries' in the face of resistance, this also supports that.

Mum2three yy to the secret language of EDs, I've had similar experiences with my dd where she's said 'well I'll have a pudding but I definitely won't eat the chocolate brownie' which is code for 'I'm absolutely craving a chocolate brownie right now.'

With younger sufferers and phones personally I'd take all social media off their phones until they're well into recovery, there's so much toxic crap on sm and it's virtually impossible to police it all. Sites like tiktok have particularly strong algorithms so if they hover over a 'ideas for weight loss' for a second they will be inundated with weight loss videos. There's also a lot of pro anorexia content (even on mn 😕) which can be hard to avoid.

If they are desperate for sm then that can be more leverage for recovery 🤷‍♀️

I'm worried my dd has lost weight, I keep giving her the side eye trying to work out if her clothes look looser. She's definitely not eating enough during the day and I lost my shit with her Ystd as it turned out she'd only had toast and jam, a chocolate bar and two small sweets for lunch despite having done a lot of exercise.

She also looks pale and seems v tired as well as feeling cold.

If she doesn't improve I'll have to take her to the Drs as she maybe anaemic apart from anything else.

I'm off to a works conference from tomorrow but my mums moving in to keep an eye of her.