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 sorry here's the correct ones

42kg
162 cm in height
August 2011

Thank you x

@keepfaith22 87.4%wfh.

@Curlyhairedassasin thank you - can you shed some light on what this means?

Also what's everyone's opinions on Snapchat/tiktok for my 12 year old going through what she's going through?
I've always let her have them but what with everything going on surely she can't ? I'm thinking about keeping them but putting a limit on so say one hour per eve after school? I know I should have done this prior but I don't
Think it helps
She just told me she needs to do a chat so she can keep her score up?!
Just need some
Guidance on what I should or
Shouldn't do. Thank you

Hey @keepfaith22. Sorry to hear about the self harm, but agree it's good she was able to tell you.

The weight for height is a way of working out how close your young person is to the weight that would be most likely for someone of her age and height. So, percentiles mean that if you got every person who was born on the same day as your dd, and is the same height, and lined them up in a long line in order of weight from lowest to highest, the person standing right in the middle would be at the 50th percentile.

The percentage that you calculate (weight for height) means that your dd is 87% of the weight of that middle person.

But, this is a very inaccurate tool, it's based on statistics and humans are individuals.

Teenagers also have a lot of growing to do, so from what I've read they need to achieve and maintain more than what the 100% weight would be in order to a) enable the body and especially brain to recover from starvation, and b) to give a buffer so they don't lose weight when they grow.

@keepfaith22 I'd say no Snapchat or tiktok. I saw a horrific video on tiktok which I reported and they said it didn't violate their terms. The woman had an and was sharing her 'tips' to weight loss and the perfect body but it was so obvious she's very unwell. Snapchat is very hard to monitor and as everything vanishes you don't know what they are discussing or sharing

I'm Thinking this too but wasn't sure I would be doing something to make her matters worse so to speak
I want to support her
All her friends have these apps

Keepfaith do you know where your dd sat per centile wise as a baby/young child? It might be in her red book. For example my dd was always on the 75th centile line for weight and height so I needed to aim for over 100% wfh.

87% is a low wfh and means no sport/no PE generally. My dd never went below 90% wfh and at her lowest weight was extremely ill, low bp, heart struggling, periods stopped, always cold etc.

I banned social media, it's toxic and Tik Tok is especially bad.

Curly the lack of support you're getting is shocking, for your ED team to make suggestions without offering any practical solutions to implement them is laughable! It's like telling you to walk to Timbuktu with a blind fold on and no compass. Have you got a social worker for your other dd? I know it's unfair on her but the only thing I can think of is to ask for respite for a couple of weeks for her and to focus entirely on your other dd.

I can't see how you can get over the barriers of weighing food/pre packaged food otherwise.

Nan yay for the advent calendar 👏🏻 we've got a hero's one here and dd has been helping herself to it which is major progress and the first time in 4 years!

@Girliefriendlikespuppies that is joyous news re heroes calendar!
@keepfaith22 Pre DD getting ill I would not have understood that you could be v overweight and anorexic. It is v much the behaviour/thought patterns which all lead to see the same risks. My DD presented in the way that medics could accept she was unwell as she was emaciated but her eating disorder was there for months and months when she looked a more 'normal' weight and there was a lot of brushing off. In fact DD found it hard to think she was anorexic enough because of the way it is normally portrayed. If the thoughts and behaviours are there in my mind it is AN regardless of wfh. Our DD is now close to 100 but the thoughts are still strong so she is not a well non AN teenager yet.
I also think SM is unhelpful . Lots of SH stuff on there and your DD is young.

Her centile as a baby was 91st she was 9lb born x

That's makes perfect sense thank you
I agree - absolutely hate SM especially right now x

If she sat on the 91st centile then she should be well over 100% wfh, my maths is not great so someone cleverer than me might be able to work it out!

@Girliefriendlikespuppies no, no social worker for my older DD despite her severe needs. I had a meeting with school last week who finally agreed to refer to social services but knowing the local provision we will get nothing with the excuse that there are no safeguarding concerns.

I caved in this morning and wanted add butter that had been scaled and DD hit the roof. At least DD was taking butter after a hard battle provided we scaled it and now even that is not possible. So angry with this ED team decision.

Curly you could certainly argue there are safeguarding concerns as her sister has anorexia which causes violent behaviours at times 🤷‍♀️ you need a social worker to help with support for your disabled dd. Trying to juggle both your children's needs without any support from the state or even your husband is impossible imo.

That said I do agree in the long term the scales need to go, are you able to keep your dd out of the kitchen so she can't see what's being weighed and what's not?

@Girliefriendlikespuppies
she is always hovering around in the kitchen but since she is refusing home cooked food it doesn't make much of s difference.

I spend the morning with DD1 outdoors (she loves nature walks and cannot leave the house alone and she needs this outlet and tbh, it does me a world of good too). DD is now upset that I gave her sister 2h of my day. She has been crying and shaking, and screaming since I came back how much she hates her life, how much she wants me to kill myself. She doesn't wanna eat now as too much fat on her body (she hasn't refused a meal in months so this is new again). DD1 is sobbing as she cannot cope with the screaming and DH is out. I am not even angry, panicky, or upset anymore. I have no energy for emotions left. I am just so fucking fed up with this shit and everything it does to my family.

Dd used to be such an independent little soul and now she is clinging to me every waking hour of the day. I know her MH is shot. but it's just so suffocating and I feel I have nothing left to give.

So sorry to hear about your day @Curlyhairedassasin. Sounds like your dd has really got completely unsettled by the message from the team, and ed has grasped onto it as a way of avoiding all fat.

Sometimes one thing that works for us is to offer a forced choice between two things. Eg, you can have butter which is weighed, or butter which is not weighed. Those are the choices. So you'll be having butter at the next (or whenever the usual meal would be), let me know how you would like it. And sticking with the food is medicine, we know what you need etc.

But I know that this advice is almost the last thing you need, it's so horrible being the object of such an overwhelming amount of distress. One thing I try to keep in mind (and probably about 80% of the time fail!) is that this is projection - getting emotion out of her into you. So if you're feeling terrible, it's probably helped her a bit.

Hope your afternoon hasn't been too hard for you all. Can you take some time out and recharge a bit any time? Sending you a huge hug xx

I'm sorry things are so hard curly life is not fair for you at all 😢 could you lock your dd out of the kitchen? I feel like this would sort a lot of issues out. If she can't see the food being prepared then she can't lose her mind if it's prepared differently iyswim. In a way if you've got to the point where all your emotions are shut down (and I know that feeling, I can remember feeling like I was dead inside at one point) then now is the time to implement change as it can't feel any worse.

I'd lock her out of the kitchen, throw the scales out and make and prepare the food you want her to have. The pushback will be awful but it's a pain barrier that will be worth breaking through I think.

That said I also kept some 'rules' for want of a slightly easier life like dropping a snack and allowing leaving some food on the plate so do what you need to do to survive at the end of day 🤷‍♀️

I'm sending you a virtual hug.

Oh my gosh I am so sorry to read this @Curlyhairedassasin that is all brutal. You are trying to manage so much at once, you really need some practical support from somewhere. The toll on your own MH must be huge. It sounds relentless

Oh and watched Planet Earth 3 with dd earlier which was very triggering at the end 🙄 just to give anyone the heads up that might be planning on watching it. She's now saying she wants to give up dairy ffs.

Hi, I’m unfortunately new here. I’ve been lurking for a couple of days reading this thread. DD15 has an ED. Brief background; she’s has anxiety which lead to self harm but having seen clinic physiologist worked on strategies to deal with this, was discharged in Feb. I thought I’d survived my hardest parenting issue. She now evidently has an ED, we saw a Dr last week as periods have stopped for over 6 months and she has a low heart rate. Dr said maybe hormone issue and we have bloods and ecg this week. I now have a call scheduled with Dr this week as it is an ED, she skips meals (unless told she must eat), and the food she makes is super low calorie eg weekabix with water when told she must have breakfast before leaving the house. She’s very sporty and loves the gym (all encouraged previously as helped with MH). She’s told me she has hang ups with food and worries about being fat. She’s 58kg and 5’8’’ but all her weight is muscle and her limbs are very lean, however to a Dr she’s not underweight, but to me she is, previous clothes don’t fit and has asked for new sports bars as old one too big etc.
That was a lot of info, sorry, but now you have some background.

Hi @NotAllGood sorry you have found yourself here but welcome.
It's sounds v much like ED to me.
GPs often don't understand that absolute weight is not the issue, a sufferer can be overweight and still have an ED.
What matters are her weight loss, loss of periods, eating behaviours and her heart rate is also a real concern.
My DD is very sporty and weight loss can be extreme and rapid and things can go south alarmingly quickly. You are right to be v concerned.
When the body is deprived of calories at shuts down non essential systems such as reproduction.
I would take immediate action
She cannot be exercising unless eating well. Especially if her heart is already showing signs of distress.
See if you can self refer to ED services in your area.
Still talk to the GP as she does need that ECG and full blood works urgently. But he needs to interpret the results looking at it from an ED perspective. A specialist service is best doing this but they will always ask a GP to do the tests.
I would sit her down and explain that she is not eating enough to fuel her exercise, growth, reproductive system and her normal daily requirements and that needs to change.
Make a meal plan of 3 meals and 3 snacks a day. Take control of meal decisions, prep and serving away from her, that should be done by the carers.
Start with stopping the losses. So enough calories to fuel her usual life. (I would be banning exercise until this is established).
She will react badly. Read Eva Musby (she has a website too) to help with strategies.
And then support her to eat the meal plan
This is the basis of FBT (family based treatment) which the ED service will prob recommend.
It's easy to type but not easy to do. There will be others along to add to this.
But it's important to say that you are not over reacting. Be pointy elbowed with the GP. You know your DD and you need a referral.
She is underweight for her (as evidenced by her periods and HR) and so her actual weight is irrelevant.

@Lottsbiffandsmudge thank you. I have a call with Dr on Thursday, I’ll sharpen my elbows. Until I started reading this thread I hadn’t realised the low heart rate was a sign, surely GP should have. They’ll certain know when I speak to them.

@NotAllGood Slow heart rate is classic if the heart is struggling due to AN. Mine couldn't keep warm and body temp was just over 34 degree Celsius (that is also something you could check at home) but other checks such as ECG and bloods need to be done in a clinical setting. I think lotts gave you brilliant advice, nothing to add other than sorry you are finding yourself here.

I found also knowledge and understanding of AN in primary care patchy at best.

Just wanted to ask how low the heart rate is? We were told to attend a&e for checks if it drops to low 40s.

Notallgood** it's the weight loss that's a concern as a healthy teen shouldn't be loosing weight. A low heart rate is worrying, they also need to do a lying and standing bp, an ecg and full bloods.

How much is your dd actually eating at the moment? If less than 500 cals take her to a&e for all the medical checks.

You might be able to self refer to the ED service depending on where you live so worth checking,

Sport stops from now, without wanting to sound dramatic her heart could fail. 58kg at 5ft 8 is a low weight, do you know where your dd usually sat on the centile lines?

If you have scales in the house throw them out or hide them to stop her weighing herself.