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

@Curlyhairedassasin will be keeping fingers crossed for you! Glad you haven't had a repeat although sorry to hear about DDs mood. Mine is 11 and going through lots of hormonal changes i think so it's really hard to know what's typical teenage behaviour and what's related to ED.

Please join me and add your name to this open letter campaigning against the 'palliative care' pathway for anorexia. Recovery is always possible:
https://the.organise.network/campaigns/network-people-with-eating-disorders-are-not-untreatable-c625ae4710165ef7?utm_campaign=M6ACTjpmex&utm_medium=whatsapp&utm_source=share

@NanFlanders so pleased to hear your news! That’s wonderful.
I’ve signed the Open Letter x

Thanks for the letter, nan. Was just talking about the palliative care way at work the other day. I am sure a few people must have thought I am making it up.

First weight check for a months. I think we gained 300gr. Sounds very little but it's the first time, we didn't just maintain or drop in a long while.

They noted that DD is very treatment resistant and has made no progress on a very long time but are unsure what to do next. They just keep asking me what I think what is causing this. As if I knew. FTB clearly has it's limitations for us. Going back in a few weeks to the clinic without a real plan forward (other than asked to make a few small changes which she already had a massive meltdown about in the car after the appointment)

Have others had stretches of 7-8 months with virtual zero progress? We are stuck on 90%wfh (-ish). So physically, she is stable. She just eats the shitty plan. I would describe her as a 'functioning anorexic' if that makes sense but it's no way to live!

When I try to push food more she gets extremely violent and physical so this isn't really an option.

@NanFlanders signed, I think this move is outrageous and there is no other field of MH in which a 23 year old would be left to die.

@Curlyhairedassasin we also have had periods of stability, in fact, I think it's a strategy to get everyone off their backs. In our case, it has then gone unstable again, but there is a weight at which a clever older teen will realize they don't get hauled back into hospital and then just sit at that. Also, our problem is bulimia which has a different profile than anorexia, and many many bulimics do function just ok in the community, there are probably more undiagnosed than diagnosed, the issue is with the health risks of that behaviour which are quite profound and rear their ugly head quite a bit for us even though they don't end up most times with a hospital stay. It's functioning, but not fully living. I don't know the solution, just wanted to empathise.

but there is a weight at which a clever older teen will realize they don't get hauled back into hospital and then just sit at that.

I am starting to wonder if she knows she is stable enough to stay out of hospital and go to school full time (very important to her) at her current weight and that in some parts drives the 'being stuck' as she gets away with it in s way.

@Curlyhairedassasin glad to hear you have a gain, even if small. I think you’re right ‘functioning anorexic’ probably is a thing, a really sad thing.
We’re earlier in our journey than you so I can’t comment on periods of zero progress as fortunately we also had weight gain today, we’re still at the weekly FBT and weigh-in stage.
I hope clinic come up with more ideas if FBT isn’t really working, surely that’s their role, to guide us as parents. Although in all honestly I’ve found this chat to have the best ideas.

@Curlyhairedassasin yes, we have had long periods maintaining at a low weight but functioning normally for someone with anorexia I.e. going to college but not being able to socialise as much as she would like. Being tired and cold all the time etc. She then fell off a cliff face which necessitated more intensive treatment. My DD is older and autistic so recovery is hard but not impossible.

I did the BEAT workshop and they told us that recovery is not linear. They even went so far as to say that recovery without relapse is suspicious. They likened it to climbing a cliff. You can make progress and then relapse or you can become stuck on a ledge for a while. The key is trying to find a way to move forward again using the skills you have previously learned so that you can move forward more quickly. One step backwards, two steps forwards so to speak.

i appreciate this is all theory but I hope it is helpful. It enables me to manage my expectations. But please remember that my DD is older so a different scenario in that she is treated as an adult.

@Curlyhairedassasin that is encouraging about the weight. I think it takes around 3,500 extra calories for every lb (450g) gain, so that 300g would be about right based on your calorie calcs around the milk? Certainly good that it's not a loss. Keep going with it, maybe see if you can get away with a higher ratio of cream? The fats seem to help in brain recovery too.

I don't know about the plateau really although what others have said makes a lot of sense. The bit about recovery not being linear (which I also gleaned from a beat course!) is certainly something I've found helpful in managing my own anxiety around it all. Having said that it seems you've been stuck for a while. Is there anything at all that could incentivise your DD to eat more? Either a reward or something that could be taken away? It seems harsh but we have had to do this sometimes, e.g. being allowed to go to the school disco is dependent on eating the yoghurt on the mealplan etc. It does cause an eruption to begin with but ultimately for my DD at least she really values social stuff with her friends so it's a really good incentive. We try to frame it as "this is what your body needs for extra activities " rather than a punishment.

@GrannyRoberts nothing to bribe her with. she has no social life (and no interest in having one). She goes to school and that is it. Her world shrank down so much!

I hope it's the milk. it's not a huge gain but it would enable us to squirrel away and slowly build it up.

@NanFlanders I'm so happy for you! Really great news 🥳

My DD refuses to wear a coat, it's exasperating, I agree it's an ED driven habit. If I force one on her at the door as she leaves for school, she takes it off at the end of the road. I have decided it's not a hill I can die on. I'm saving my energy for making sure she eats.

Ahh @Curlyhairedassasin I'm so pleased you got a gain! I really hope it continues.
We're really struggling again I hate this illness. We're about 101% wfh and he's struggling with almost all meals again, finally got the go ahead for full time school today (teacher supervised morning snack and I went for lunch) had to bring him home at lunchtime as he didn't finish all his crisps and his mood has gone from very emotional to very angry that I won't allow him to run around the house playing nerf. I've said I will no longer respond if it's a nerf related question so he's stomping and sighing and shouting about how much he hates his life. I'm hoping this is the ed that's pissed off? Clinic keep saying it should begin to get easier....... I just want to run away. I'm hoping he gets the afternoon at school tomorrow and showing him a firm boundary helps, I also really want a break from him for just a little 😔

Hi everyone, just wanted to check in. I've signed that letter Nan - quite shocking, I had no idea this was a conversation that was happening. I think it really reflects an out of date way of thinking about eating disorders as being purely psychological / psychiatric, without having a better understanding of the biological / brain aspects.

@Curlyhairedassasin - it's really positive that there's been a gain. I'm hoping that it's the fortified milk and you can achieve a gradual gain consistently without your dd noticing for a while. I don't know if that's sort of naive of me, but more weight can only help. Do you think you might be able to edge towards introducing anything home made? I was mulling it over the other day and thinking about what I'd do if my dd would only eat prepackaged food, and I was imagining removing the lids from yogurts and adding in some double cream and then glueing them back down....

Hi to you @keepfaith22 - how are things going? My dd's eating gradually declined and we spent a while where she was saying she wasn't hungry / felt sick / had a sore tummy. This was before we had realised she had anorexia, so I was trying super hard to not put pressure on her, but it just made everything speed up in terms of more weight loss. My dd also had some friendship troubles, and I think this was one of the contributing factors.

The requirement to eat 6 times a day has ruled our lives for the last 4 months since we started it, and it's been very hard, but gaining weight has helped things, although we are a very long way off getting back to anything like normal. I did the beat course 'developing dolphins' which I found super useful, im planning to sign up for their raising resilience one soon.

We are plodding on. We had our physical health appointment at camhs today (STILL on the waiting list for the eating disorder team). Dd is now 103%, after quite a rocky ride over Christmas. We found it really hard to keep to the routine and she missed snacks almost every day, and it had such an impact on her state - we had a few days where she was absolutely awful, right back to the wailing and screaming at us. I put my foot down heavy on fats ( we've gone through a litre of double cream since the weekend) and things seem to have settled a bit. It was obvious that unless we are putting the food in front of her, she won't eat. So there is a very long way to go.

I've been fantasising about getting the sack from work this week 😂 it all seems so tiring!!!

Anyway, just wanted to say hi to everyone living with this, such a lot of admiration for all of the strong women on this thread! Imagine what could be achieved if they got a whole room full of ed parents together - world peace? Maybe after we all had a nap 😂

@greydoor Snap! I was actually wondering today about buying super glue and enhancing all sort of puddings and the gluing the lid back on too but I think I would get busted. I will just stick to the milk but the mind really wonders, doesn't it?

Had a call from the eating disorder team and they want to see her for a physical exam a week Thursday so just be nice to get some support as feel I don't know what I'm doing....

Tonight she hardly touched her meal and she says she only eats because I force her and that she tells me she is trying so hard and I generally feel she is....she shakes and gets upset and I can see she's so distressed so I gave up and said to eat half 😞I feel it's draining me and I can't wait for meal plan and something to follow as I feel I'm failing

Hey @summertimesadness24 sorry to hear about how hard it is. How old is your dd? It's so counterintuitive as a parent - we are always trying to prevent distress and keep them away from what upsets them, but it's the exact opposite if they have a restrictive eating problem.

We have been seen for physical health checks every few weeks for 4 months now, and have not yet had a word of advice re eating from camhs or the eating disorder team. I know from this group that the main approach is to have a structure of 3 meals plus 3 snacks every day. I aim for minimum 500 cals per meal, and 2-300 per snack, but to be honest often they exceed these. Animal fats are important to help brain recovery, so eating meat and dairy where possible, and adding high fat ingredients if you can.

We started the 3+3 the day we went to the gp, and have kept this going mostly. I aim for meals and snacks which are as small as possible in terms of size, but this means I load them up with lots of calories. For example I make a shake with a half melted small tub of haagen dazs, 100mls double cream, a couple of strawberries, a teaspoon of sunflower oil, and sometimes a heaped spoon of cashew butter. This makes a small glass, but can be at least 800 calories.

If you are able to start 3+3 even with smaller meals, having a structure will help. The only way out of anorexia is to eat their way out, and it's very distressing, for them and for us. Some folks like to start slower and build up, we decided to jump in and go for it.

Evidence for teens suggests if you can make some gains in the first few weeks this is more likely to lead eventually to recovery.

Have you read the Eva musby book? That's also where I learned a lot about how to support mealtimes.

I've signed that letter as well, that's absolutely shocking and sickening that they'd give up on a young person with anorexia because they didn't feel they were engaging with treatment 😡 wtaf.

Curly that's great your dd has had a gain, I think you need to ask your team about home meal support. You need to tell your dd the pre packaged meals are stopping but have someone with you for the inevitable carnage that will happen when you put a home cooked meal in front of her. I don't think there's another way through this other than the hard way, the longer you put off challenging the ED the more difficult it becomes.

Alternatively I think I'd be asking for her to go on the waiting list for a tier 4 bed, maybe she needs to be inpatient to move forward especially given the violence she's shown you and your responsibilities towards your other dd.

I don't think you'll get the weight gains you need to see meaningful change sadly on her current plan. My dd needed gallons of double cream and even then it wasn't a straight line to recovery sadly.

The being cold thing is definitely a ED behaviour, dd was the same and at her worst she left windows open, had cold showers and wouldn't wear enough clothes. I still catch her doing some of these things now but it's tricky as I think she's autistic and she's never been very good at recognising if she's too hot/too cold.

I monitored showers, enforced her wearing vests and jumpers and covered her bed in blankets. We got a heated blanket which seemed to help a bit.

We're plodding on here, dd seems pretty good at the moment, eating well and making some good decisions. I'd like to see a bit more freedom, she still sticks to stupid rules like only drinking two non water drinks a day 🙄 but generally seems to be in quite a good place.

Hi just wanted to say your not failing, it's heart breaking to see our children getting so distressed and we're hardwired to try and elevate their suffering not add to it!

Unfortunately EDs exploit and manipulate that instinct and we have to battle against our intuition. It is important your dd finishes all of her meal, ideally every last scrap.

Tips for getting her through it include lots of distractions, put the telly on, talk nonsense in between coaching her to take another mouthful, play a game, anything that takes her mind off eating. Music can be helpful as well.

I personally wouldn't rely on a meal plan from Camhs, they're often woefully low on the fats and calories your dd needs. You know your dd best, you've been feeding her since she was born! You decide what she needs based on what you know she likes and what is going to get the most calories in.

Thank you, I've had a good chat with her tonight and she seems in good spirits apart from she looks like she is wasting away and she is feeling dizzy/faint
She knows she isn't eating enough and says she can't
I have to get on top of what to feed her as she's hardly eating anything

She's 12, 13 in august

Same age as my dd. Mine was similar when we realised what was going on - I was hoping the summer holidays would allow me to 'reset' her eating, but I couldn't get a hold on it at all. It wasn't until the penny dropped that she had anorexia that we could start to move on.

It genuinely is hard for them to eat. Physiologically it doesn't make them feel good at the start in particular, and they also have an 'ed voice' inside telling them all sorts of stuff about how terrible they are for eating. I found this a good watch to help me understand.

But, there is no way to recover without eating. When ed sufferers are at a low weight, brain function is impaired, and so recovery of this needs to happen before anything else can. We quickly descended into a place where my dd was hiding and discarding food, extremely distressed, verbally aggressive, frantic. But the wisdom from this page and other sources eg Eva musby is that's actually a positive sign - the ed is 'rattled', and starts fighting to remain.

Take each day as it comes. What's your plan for dd's eating today?

dd13 was on the 75th percentile for weight and height prior to the ED however she is refusing to return to that as she insists she was fat. She is currently 50th percentile which I believe is 100% wfh(someone plz correct me if I’ve misunderstood this) and she is still distressed at this weight. Lots of confrontation over only being permitted 30 mins supervised walking for excercise and I suppose I am just wondering what the “norm” is?

@summertimesadness24 I echo what others said. Anything you can do to establish 3 meals and 3 snacks helps. Could you tell a lie and say GP or clinic have called you and said she must start this? We started this with DD being required to eat same as rest of household, as we were told we need to establish that before we can move to a weight restoration plan. Although I wish I’d just tried to sneak extra calories in at that point. It was hard, and met with strong resistance from DD and not every meal was finished, but if you can I’d try to start.
Sorry if I’ve missed it but has GP done all her Obs? Standing and sitting heart rate etc?