Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

LaCerbiatta I'm not surprised your dd was happy to work with this team if they're suggesting she can eat less 🙄

How do they justify a meal plan so low that she will still lose weight?

It sounds like they've just given the anorexia a massive thumbs up and completely undermined you tbh.

Her ECG showed some abnormalities that the dr decided were nothing as not backed up by the blood test.

It's really worrying that she may continue to lose weight 🙁 although she stabilised from last week. I'm not sure what we'll do now but dd being told this it will be really hard to make her eat more indeed... We'll just have to continue monitoring I think.

Thanks for your comments, it's really important that we're aware of how risky this approach could be....

Not ED-related, but I've managed to get 4 tickets for the Taylor Swift concern in Liverpool for next year. DD is the biggest Swiftie in the world, so hopefully a good incentive to get out of hospital!

@Nomoreplease23 my dd is turning 16 soon and we have been WR for about 2 years

Dd got to 105% wfh similar to your DD. We also stopped weighing. As it was causing more issues than it helped.
Letting go is so incredibly hard.
It's taken me 2 years to get to a point where I have almost stopped checking up on her eating. But tbh I still do keep a mental note.
She plays sport so I get to see her in sports clothing so no hiding under baggy clothes so i have that at least.
She is in a good place mentally but even I am still struggling.
I don't have the answers tbh. My DH gave up worrying almost as soon as she WR (and was complaining I had made her fat). I still have massive issues with PTSD and find things like her turning down dessert in a restaurant or choosing baked fish every single damn time we are out a massive trigger.
But I have to try to hide it. .
As she is an elite sport person we do actually have to worry about nutrition so I can't let go entirely as fuelling her for performance is now a bit of an art form. But when she isn't training (like now) I do try to step back. She gets v cross with me. And of course can't understand my side at all. Cos she's better so I shouldn't worry.
This is a bit of a ramble and I am not sure ot adds much except maybe some solidarity?

@LaCerbiatta oh my goodness. No wonder she liked the team....
1200 cals is ridiculous.
Was she actually showing any compensatory behaviour on your plan? Great way to put that idea in her head...
I'd be absolutely fuming.
1200 cals for a normal woman is a weight loss level of cals.
Have they redone the ECG and looked at the QT phase? Bloods are irrelevant.

@LaCerbiatta for what it's worth, my DD was on 1200 for the first few weeks, just to get her back into regular eating of 3x3. I don't know how low your DD is, but we were about 85% WFH. It then got upped to 1500. She didn't actually lose much weight at this, about 0.5kg in all, but she wasn't doing any exercise and wasn't in school full time either. It didn't last for long before it got upped.

My dd was fixated on 1200 cals at the beginning of her illness is well. Where are they getting that figure from?!
It's frightening. I just saw two very slim girls going through tesco meal deal sandwiches looking for the lowest cals. They had phones and I think were looking at MFP or similar. My heart sank.

Reading some of your posts makes be feel scared what illness is my DD going to go through? She is only 11 years old, 12 next month and I think she is already showing symptoms of anorexia. She is increasing her exercise goals, to make matters worse she has an Apple watch which counts calories. I am kicking myself because I know it had started 2months ago but I didn't notice. She doesn't look thin but she is definetly decreasing her food intake. She has been asking to go to her dance studio more often, daily runs with me, workouts in the our home gym with DH and we have let her. I feel so sad now that I haven't realised what I am doing? I don't know why she's doing this to herself, she isn't overweight or anything. You are probably in further stages of this illness, so you probably have some advice . thanks

Scream generally speaking for anorexia to take hold the sufferer has to lose some weight. Is your dd eating okay? If you feel the exercise is becoming obsessive then stop encouraging it - no more joint runs, the watch can be 'lent' to a friend, check her phone for any signs of calorie counting.

Start encouraging lots of food, you'll soon see if there's an issue if your dd is refusing foods she previously enjoyed.

If it's early days you can turn it around quite quickly.

@Lottsbiffandsmudge thank you for the solidarity handhold - DD says that her Eating Disorder is 'behind her' and DH has compartmentalised this since discharge from CAMH, his approach is that DD is 'living with Anorexia' (she is living, going out with her friends etc.) - I'm afraid I don't feel I can rely on him for pushing the food nor being vigilant. I see the ED habits, zero sugar drinks, just leaving a bit of food on the plate, coffees now and again (I swear she doesn't like coffee) and they are all triggering.

Could I ask what you mean by you stop checking up on her eating? I surreptitiously watch her make and eat breakfast and also we always have a family dinner in the evening together. To be fair she is eating OK, has a sweet tooth, it is the downward spiral that I am conscious about almost every waking minute of the day. As you say I need to let go and remain watchful.

Hi screamtime

Early intervention is key and it sounds like she's still at the point where you can turn it around. I'd approach it gently at this point and encourage eating more as she's exercising a lot. Try not to discuss calories or weight with her and approach it as energy being essential for exercise. How she reacts to this will be very telling. If she's defensive then you might need to think about banning some of the exercise unless she eats enough. The watch probably needs to go unless you can disable the calorie function?

@screamtime MyFitnessPal was definitely a factor in my DD's illness taking hold. She became obsessed with it, and kept reducing the number of calories per day. Before the AN really took hold, she did realise it was doing her no good, and deleted it, but by then she already knew the calories of almost everything. I would seriously get rid of that watch, and put a parental controls tracker on her phone so you can see if she downloads anything similar.

Not sure how you can stop it. Last summer DC weight was fine but I knew she was purging. She was already having 3+3 meals. I could see her slide down. The more I got her to put in the more she must have purged till we got to 76%wfh.

Not to be discouraging but that's how it was for us

@Nomoreplease23 when I say 'stop checking up on her eating' I mean asking her what she had when out, asking if she had snack whilst I have been out etc.
At some point I have to trust her again. And I do. I just do not trust that an ED ever goes away properly.

@screamtime this is exactly how my DD started with AN. Increased then excessive and finally obsessive exercise. We even encouraged it to start with (it was lockdown, her sport had stopped, everyone was working out at home with Joe bloody Wicks, she got exercise to do at home from school, her clubs etc etc).
Then she stopped eating snacks and take aways. Got obsessed with cooking our meals (i was pleased with the help)....
The exercise started in June 2020, by Oct 2020 she was doing burpees in the rain on our caravan holiday and would not stop and refusing to eat fish and chips, by Dec she totally lost it when I buttered her toast. It was then I properly realised how bad it was.
I knew something was wrong (like you do but had been fobbed off by school sports teachers, her elite football physios and coaches who all said her diet sounded fine. (She was actually in a c 1000 cal deficit a day) I knew she wasn't fine. By the time I saw her naked in the Dec she was skeletal and 77% wfh with bones protruding from her bum.
I could not believe I hadn't seen the weight loss. When you see them everyday you don't neccessarily see it.
You are right to worry.
Here is what I would do. Have a chat about recovery, which is a vital part of being fit. 2 rest days a week are a must. My DD plays v high level sport and has 2 rest days a week imposed by her club. And rest days mean no activity at all.
Then talk about fuelling the activity, growth, brain development and puberty. Explain she needs 3 meals and 3 snacks a day on every day (incl rest days) to fuel all that. Rest days need the fuel to repair muscles.
If she won't fuel properly she can't exercise.
I would remove the watch. She's 11 and so it is your decision not hers. They are evil things and banned in our house.
If you get an extreme reaction to any of these suggestions she is probably already in the early grips of an eating disorder.
It's key that you take control. She is v young and therefore IMO not able to decide what level of food she needs for herself. I know others have mentioned allowing some input but that is for older DC.
Just my suggestions! But the quicker you act the better recovery is.

I also meant to say that the 'why is she doing this' is possibly that she is misinformed.
My DD thought what she was doing would make her a better footballer by making her v fit.
Then she lost weight almost by a accident! She didn't mean to. But once they lose weight (because of an exercise obsession in our case) AN can develop. Which leads to the restricting..
My DD never wanted to slim down she wanted to stay fit and even get more fit.
There is a lot of nonsense talked on line about fitness much of which is aimed at adults (but is prob still dangerous) and she bought into all that wholesale. Healthy eating, lpw csrbs, keto, HIIT etc etc
Someone at school had commented that she ate a lot too which made her more conscious of it. She had never considered it before. It was a killer combo.
There is not enough talk in kids sport/ activity about the importance of rest. And fuelling properly. More is not more exercise wise, it leads to injury and burn out.
And also I must add that in the early stages of AN the sufferer can feel very very energetic. My DD ran some incredible 10k times when she first started losing a lot of weight. This often leads them (and carers) to believe they are fine. But its actually the body diverting precious cals from the brain to the heart and limbs to allow what it thinks is a starving person to make a last ditch attempt to find food. It's a primitive response to the early stages of starvation.

My DDs story is almost identical to @Lottsbiffandsmudge
Sue never intended to lose weight and hated her body as it became thinner, but the Ed had taken hold and she couldn't justify eating unless she had exercised.

I think it's quite common in sporty girls as it's so easy to fall into a calorie deficit and lose weight, my sil was anorexic as a teenager and told me it's because she knew the lighter she was the faster her running speeds were.

She like lots dd recovered as she was told she could do no sport unless she started eating. That said even now what she eats tends to be very healthy and she still exercises a lot...

Fell out with dd Ystd over lunch, lunch seems to be the most difficult meal of the day. She's now down to eating jam on toast, a piece of cake and a chocolate bar. I'm so tired of it, I think being off college and not having enough to do is part of the problem, she really needs to get a job.

@Girliefriendlikespuppies it must be difficult for those balancing the over exercise with sports, to monitor when the activity is driven by sport or by the ED. Such a complicated illness.

Like your DD it is lunchtimes that I struggle with - that was when DD was throwing her meals away at school and where I feel the ED tries to exert its influence.

DD is at home alone so makes her own lunch - I try to influence this by making good food choices readily available but she seems to route out something else to make - DH says that she is exerting her independence, I'm not sure. The lunch you mention (jam on toast, cake and a chocolate bar) is way more than my DD will eat independently :(

The lack of structure to our DC's days during the holiday takes me back to lockdown that caused all this.

@Girliefriendlikespuppies it must be so draining having to fight for every meal. At the moment while my DD is in hospital someone else is fighting those mealtime battles for us, but I'm aware it's eventually going to fall back to us and I'm dreading it.

DD is doing slightly better, in that they are happy with her bloods so have stopped her daily blood tests and 4 hourly blood sugars. She's still on 4 hourly obs for BP, HR and temperature though. She's VERY irritable though and is sleeping really badly. She's still on bed rest (probably not helping her mood) and is slowly increasing her food intake although every addition seems to be a fight with constant negotiations going on as far as I can make out. Last night they told me "oh we've run out of oatcakes we need more for morning snack tomorrow". So we had to belt down this morning to the hospital to deliver said oatcakes in time to avoid meltdown at snack time. I didn't even know she was having oatcakes! I'd just left a couple of packets with them when she was admitted but it seems these have made it onto the meal plan.

We've got a meeting with the family therapist later. Not really sure what to expect from that, do others have experience of this?

@screamtime like @Girliefriendlikespuppies @Lottsbiffandsmudge @NCTDN I don't think my DD started with weight loss as a goal. Hers was an extension of general health anxiety. She'd been very fixated on germs and illness for a while with some associated ritualised behaviour /compulsions. This progressed into a drive to eat healthily to support her immune system and to exercise to stay fit and prevent illness. A particular episode of operation ouch relating to the circulatory system seems to have stuck with her, and the idea that fat and sugar thickens the blood. But as the weight loss happened I guess that's when the AN took hold? Is that how it works?

Hi @GrannyRoberts OCD and AN are often co-morbid. My DD often had hands that are red raw from washing. However, falling into calorie deficit itself can precipitate anorexia. There was an experiment during the war where healthy volunteers were deliberately semi-starved and many went on to develop anorexia-like symptoms. There's a link here which may be of interest: https://maze.wp.st-andrews.ac.uk/2021/05/04/the-minnesota-starvation-experiment-how-it-happened-and-what-it-taught-us/

@Nomoreplease23 you hit the nail on the head with "to monitor if the activity is driven by the sport or the ED".
It really was difficult. Her obsessive activity was clearly AN driven when she was logging our lock down walks on her Garmin watch and going to extraordianry lengths to get us to walk further, or power walking when supposed to be walking or pretending to meet a friend and running laps of the village
As she got slowly better it was so hard to tell what was driving the exercise.
She has always been totally unable to not move in a given day. Rest days were hideous.
Even now she does more than her brutal pre season plan, always pushing the envelope. But now I am not sure if it is just her desire to 'make it', or residual ED behaviours; a lot of her role models talk about going above and beyond. But she will now have days off. (Whilst climbing the walls) because that also helps her performance.
@GrannyRoberts hope the family therapy went well? My DD also had OCD as a child. And a certain amount of anxiety. She had CBT to help and we had moved on but her anxiety was always under the surface.
It was her anxiety about 'losing her fitness' in lockdown that drove her restricting and compulsive exercise. But then the rapid weight loss brought full blown AN and it stopped being about sport in any way but just avoiding eating.
This New Year (18m following WR) , whilst on holiday, we turned a corner when her embarrassment at doing her off season MAS runs on the beach infront of dog walkers over rode her desire to do the exercise. My DH and I did a little happy dance about that. (She of course still did do the MAS runs!!!)

Hope everyone's weekends were ok and uneventful.

Just had a question about overshoot/weight restoration as the means to recovery.

DD14 starting RO-DBT in September as is very entrenched and inflexible. Currently weaning her off fortisip.

I'm getting ok calories in but she's hovering around 48-49kg (growth charts and wfh means I think she should be around 52-53kg) so I need to get more into her.

However her Maudsley therapist seems to think that because she's got her periods back weight isn't the issue and that I don't need to focus on more calories. She also told me off for hiding calories to get more into her. I asked her about the theory I've read here and elsewhere about overshooting, and she was skeptical of online support forums and (quite rightly) said everyone is different and talking from different experiences and perspectives.

DD might look ok but I feel that she needs to sit slightly heavier (was always 75th percentile so 100% WFH does not get her back on her growth trajectory).

I'm just torn - do I ignore the advice and carry on trying to get the weight up? Or will a new approach and minimal weight gain be worth a try?

I'm just so tired and worn down of being in the same loop for a year and feel really stuck

Little I was given the same advice and I ignored it as my instinct was that dd needed to get to a higher weight as, like with your dd, she has always been around the 75th (or higher) centile.

I pushed dd over 100% wfh and although a lot of ED behaviours are still there mentally she is much better (getting on with life, going to college, maintaining relationships and nicer to me!) In an ideal world I'd have liked to get her even higher weight wise but with the ED behaviours she still has it's just not possible.

The fear of weight gain amongst ED health professionals is quite frankly terrifying and imo will just keep unwell children unwell for much longer.

*LittlePickleHead

At 78% wfh dd was having regular periods so I don't understand why that's used as a marker that they are a good weight. She was sent for a blood test to check she was ovulating so I'm not sure if camhs actually believed her.

I have added calories because instinctively as her mum I felt I needed to do whatever I could to help her. It's obviously not ideal but I'm hoping with weight gain will come the mental clarity to want to be well. It was only when she hit 95% that she seemed to listen properly to the Psychiatrist about taking medication so that was a huge step forward.

Dd doesn't know her weight and the gain has been very slow so doesn't really show.

You have to do what you feel is right.