Teen Eating Disorders support thread 3

[Girliefriendlikespuppies]

Thought I better get a new thread going!

Please come and join us if your teen is struggling with an Eating Disorder. We are a kind, supportive bunch of parents looking to support each other through the dark days of caring for a teen with an ED.

Yes, they do have caveats for low income, but they are using the £16190 figure used for free school meals.

I know they were challenged last year because they had decided they weren't providing transport at all, I think it was. They were taken to court and backed down.

It won't be until next September, but I'll definitely contact Sentas nearer the time. The thing is, if they levied a charge equivalent to the bus pass charge (£475 per year), I'd think fair enough. But they want £433 per term.

@Lottsbiffandsmudge 🥳🥳👏👏🎉🎉🍷🍾

Well done you!!!

Well done @Mogtheanxiouscat

Hello, I was on the original thread and thread 2 as TheySeeHerRowling - had to quit because dd started stalking me.

I don't want to sound smug or annoying but if anyone remembers me I just wanted to let you know that dd is within 2 weeks of discharge, at 99% of WFH. She genuinely just seems to have got bored of AN - in her case, I think lockdown pushed an adolescent crisis into a pathology.

Just want to say, in the hope that I won't be back, that I wish you and your dc all the very best. I can't imagine going through anything worse (still cry when I look at pics from last summer) and will push whenever and wherever I can for better ED provision for all in future. At the moment it's hit and miss, to say the least.

I will continue to follow the thread in case I can help, but will keep quiet otherwise. High calorie love to you all xxx

Fabulous news @AnaCanDoOne How long has it taken?

It started in January 2020 NCTDN, after some kind of friendship issue that still hasn't been explained. She lost about 2 stone in 4-5 months through ridiculous amounts of exercise (was a size 8-10 to begin with).

Amazing news Lotts and AnaCanDoOne. Well done on all the hard work.

Lougle £433 is excess. I think it is an underhand way of limiting pupils' choice of college - they can't lawfully say they only provide transport to be nearest college as the gov policy states "they must be supportive of reasonable choice" for post 16, but by increasing the price it limits the choice for some. Besides low income shouldn't be the only consideration.

I wouldn't assume the LA's policy is lawful just because they were taken to court recently. They wouldn't be the first to replace one unlawful policy with another.

Once DD is 16 you can apply for UC for her in her own right which may help. 16 year olds in receipt of PIP and with a limited capacity for work are eligible for UC even if they are in full time education. This would then allow DD to apply for a 16-19 bursary, which could be used for transport. You would lose Child Benefit and, if relevant, any CTC/UC from your claim for DD1, but sometimes works out more overall.

@NelleBee I think PDA and ed is a particularly horrible combination. As if life wasn't hard enough?!
@Rollergirl11 I think she might be slightly relieved. Her friend's mum just text me to say DD had told her daughter, which I'm hoping is a good sign.

I don't want to contact gp, but it's the responsible thing to do. I think getting some baseline tests would be good too. And she'll have to realise it's serious.

Well done lots I was wondering how you were getting on, that is great news and you should be proud of yourself and your dd!! Does your dd still have OCD? What form does it take? My dds OCD seems to be getting worse the better the ED gets 😩 I think my dd will have to go over 100% wfh as she was on the 75th centile for height and weight previously. Not sure what that means I should be aiming for though as my maths is rubbish!! Did you tell your dd she had made it to 100%?!

Ana brilliant another amazing achievement, I keep praying my dd will just get bored on it!! I'm certainly very bored of it 😉

Thanks @EDNC

@Girliefriendlikespuppies I think my DDs OCD was a way to cope with her intrusive thoughts and anxiety caused by her perfectionism. She swapped it for her ED... her OCD was around arranging things and tapping. She still likes routine and is very much a creature of habit. She still has anxiety mainly around her football playing and has her confidence knocked easily. We are trying to use evidence based techniques to help her. She also struggles to let go of things outside her control. Which is a nightmare when she plays team sport as there are a whole lot of uncontrollables. We are also asking her to sit with those feelings of anxiety and learn to tolerate them.
She is going to do some therapy around her perfectionism in the summer with me and her KW.
I think you are prob right that your DD will need to go higher wfh % wise. I really recommend pushing until her state of mind improves.
First day of phase 2. Already DD resisted her cereal at breakfast saying she wasnt hungry. She ate it. So this isn't the golden dawn of normality by any means.
I told her her weight was about right and we now needed to maintain it. She decided to drop her 2 glasses of milk a day (c260 cals) and I am secretly flexing her evening smoothie to make up the rest. That way if she starts doing more and loses weight I can add the cream back in... this is just whilst we work out what she needs to maintain.

@AnaCanDoOne great news and well done
Wishing you all the best in your onward journey.

@AnaCanDoOne hey there, I don’t know you from the other threads as I am a newbie. But it’s lovely to hear a success story. May your DD flourish from strength to strength.

@Lottsbiffandsmudge it’s funny you mention perfectionism. DD saw her psychotherapist last night and she is saying to DD that she thinks she is a perfectionist and has always had an inner voice telling her that she isn’t good enough or deserving and that now it has manifested itself as an ED.

@AnaCanDoOne yay and double yay! That is lovely and inspiring to hear, thanks for sharing.

And well done to @Lottsbiffandsmudge too.

Gosh my DD's weight gain is glacial. I think we made the mistake in the beginning of not taking over all food and prep, but letting her having some autonomy. To be fair to ourselves, CAMHS just emailed us the diet plan and didn't have any guidance as to how to put it into practice. I think we probably seemed more competent than we are.

Second mistake was her going back to school without morning/lunch supervision.

Hey ho.

Lots I can imagine letting go of the reigns a bit must be quite nerve wracking tbh, I'm feeling nervous for you!! I guess you'll have to see how it goes and if she loses weight or the anorexic thoughts start getting loud again go back to plan A. Is your dd responding to hunger cues or able to choose a snack?

Letting go of the reigns seems a million miles away here, although dd eats well three times a day she is in no way able to eat outside of these times and still not able to make any sensible choices re food.

I think you're right re going over 100%, in my mind I think she needs to be just over 9 stone, so not a million miles off.

I am still living in fear of her finding her weight out though as she still thinks 8 stone is her ideal weight 😩

@Girliefriendlikespuppies we are not giving her much autonomy yet. She decides between hot cross bun or crumpets for afternoon snack and that’s about it. She has started to express a preference for foods and for instance asked for a chicken and pickle roll rather than her usual tuna last week.
I don’t think she has been that hungry on 3300 cals a day! There was one time when she was mountain biking with her dad but she merely brought forward part of her lunch and ate it earlier but didn’t add extra.
We are going away next week so will probably try to eat out once and challenge her a bit which I know we need to do.
Because she is 13 she doesn’t get a say in lunch and dinner anyway (none of mine do) but we are trialling 1 day a week school lunches after half term when she will have school dinner and have some independence there. But if her weight drops she knows she will have to come back home again....

Hi, I’ve been lurking on MN for years, but this is my first ever post. Having spent a few days reading this thread, I’ve come to realise that what I’ve known to be a problem for some time might be more serious than I realised, and I’m hoping you can give me some advice.

I’m really worried about my DD. She’s 11 (nearly 12 - yr7) and has been restricting the types of food she’s been eating for a good 12 months. At first, it seemed to be about health, not calories or volume - she’d happily eat cheese, roast potatoes etc, even fruit with cream, but cut out sweets and ‘junk food’. Over the last 6 months though, it’s been gradually getting more and more extreme -
no cheese except feta and cottage cheese, no white bread, pasta or anything, no butter. At one point she’d eat loads of nuts but she’s even stopped that. She’s not actually lost weight, but hasn’t put any on even though she had a massive height increase last year. She’s always been very tall and slight for her age, but now weighs 38kg at around 164cm.

My GP has been pretty useless. She saw us before Christmas and basically said ‘eat bigger portions’. When I told her that DD wouldn’t touch puddings, chocolate etc she actually said ‘nobody needs to eat those foods’ (in front of DD, which hasn’t been helpful!). After calling again at Easter, blood tests were arranged, which apparently didn’t show anything of concern (I had to chase the results).

I’ve spoken to DD and she knows that she’s underweight, and that it’s not healthy. She’s agreed that she’ll eat exactly what I give her, but at the same time there’s no way she’d touch the sorts of foods that are bring discussed on here (ice cream, milkshakes, cream) - she’s so bloody stubborn and I can’t actually force her to eat.

What do I do now? Give it a couple of weeks and see if I what I’m giving her is enough to put on weight? Go back to the GP and kick up more of a fuss? Or something else? I just feel so bad that we’ve got to this point.

Oh, and she’s also exercising excessively, which we’ve stopped at home, but she’s still doing horse riding and athletics club and anything else going at school!

@ResistanceBanned
Poor you, it's so stressful isn't it, especially at this point where you know something's wrong but bewildering.

Her diet sounds similar to that of my daughter - a bit orthorexic. We've discussed this on these threads, but the government/primary school obsession with 'healthy' eating and balanced plates and 5-a-day does some children (ours) no favours at all. There was a lot of talk in lockdown around food and exercise too. The weight and height you give suggests that she is underweight as mine was. In a way, this is helpful as it means her situation will be taken seriously - some children don't get the right help as they might still have a 'healthy' bmi.

The first GP I spoke to fobbed us off. The second, very senior and experienced, immediately got her in (and this was in full lockdown after the Christmas break) to weigh and measure. Straight away she was referred to CAMHS who rung to triage that very day.

I'd suggest that's what you push for. There was nothing wrong with DD's bloods either nor with her ECG, heart rate, blood pressure etc but all these things need to be checked as a matter of urgency by a paediatrician.

Then you'll probably be advised to do FBT - Family Based Therapy - i.e. taking over her diet and following a diet plan. I wish we'd been advised to take over entirely and not offer her choices with this as our progress has been very slow.

Others on this site are far more knowledgeable and everyone is super helpful. It's been a lifeline for me.

PS DD not allowed to exercise at all other than family walks

hi @ResistanceBanned you're certainly at the right place sadly. I looked on the NHS child BMI and your dd is below the first centile by my calculation @Lougle can do the calculations wfh etc I don't have the app.

My DD also didn't lose a lot of weight but what happened is she stopped growing and it happened over a period of time, by the time it was serious she was 10kg below her friend (they'd previously been the same weight).
Cutting out the foods and restricting dairy is a bad sign, I would have been really really angry with your GP. We had a bad experience with the GP first time around, she seemed to think I was a hypochondriac and was quite rude. After the appointment though she rang me and apologized as she had calculated DD's BMI and she was below the first centile. She then took it very seriously.
Restricting fats and calcium is a real problem as the developing brain needs fats and the body in the teens is storing calcium and developing bone strength and if that is not actioned it can lead to bone problems in life. I would be calling your GP and requesting a referral to camhs. Some camhs also let you self refer. I would expect they will tell her she must stop all exercise, they might even say no school (most likely actually as she is way to light).

The problem you have is that what you agree to give her won't be enough to put on weight and start the growing. She needs 3 full meals and 3 big snacks a day. My DD also will not eat ice creams, cake, pasta milkshakes etc they have all become fear foods unfortunately.
My DD is also very stubborn and it took a trip to A&E and being put in for a week to get her to eat the plan that she needs to. Every day there is a struggle with some meal and she will try and cut all the corners possible.

What my DD is eating now as an example (NOTE your DD has been restricting so couldn't eat all this straight away, LOOK at re-feeding syndrome). Even with all this food she is putting on less than 1kg every 10 days...
Breakfast
2 weetabix and 1 toast with peanut butter (thick)
Snack
1 trek bar and a glass of semi-skimmed milk
Lunch
Ham and salad sandwich (full) and a 150g pot of yogurt
Snack
4 custard creams or digestives and a glass of milk OR
yogurt (150g) granola (2 table spoons) and fruit 1 piece or 2/3 cup berries.
Dinner
Family meal (same size as mine) and I have been making full fat everything and plenty of home made curries as it is easier to get the calories up
Snack
trek bar and glass of milk.

Hi @ResistanceBanned sounds like we are at a similar place with our dds.

I'm going to attempt to get a GP apt again tomorrow. Our surgery has rubbish system.

I've told her no exercising today other than the dog walk. She's come straight in from that, had ice cream and started exercising in her room.

@ResistanceBanned

Oh, and she’s also exercising excessively, which we’ve stopped at home, but she’s still doing horse riding and athletics club and anything else going at school!

@ResistanceBanned that all sounds very hard. I've given your DD a birth date of 27th June just to put her details through my app (feel free to PM me with her actual date of birth if you want more accurate results) and that gives her a Weight for Height of 78%. That means that she's 22% lighter than the average girl of her height and age.

In terms of significance, different CAMHS have different policies, but mine would say less than 80% no school, no exercise and wheelchair when out. 80% no wheelchair and can go back part time to school, but no PE and supervised eating. 85% full time school but no PE.

How many calories do you think she's eating? If it's less than around 800 per day, I'd consider going to A&E tbh. Certainly you need to contact the GP and ask for assessment.

Gosh that's interesting @lougle and totally different to our CAMHS (in London, allied with Maudsley).
For us:
At less than 80% no school but never heard mention wheelchairs and she was allowed a 15 minute dog walk a day. It was lockdown anyway.
80% she's in school full time and didn't have to have supervised meals (though we are now going in for lunch).
85% is the benchmark they've been given for being able to play football, do PE etc.
I think they maybe go by the other stats as well as weigh - DD's period came back when she was less than 80% and her heart rate etc were fine.

@SoTiredNeedHoliday diet plan is pretty similar to the one we were given and fairly standard, I think. Three chunky meals, three roughly 200 calorie snacks. And we've been following it and DD is nowhere near gaining 1kg every 10 days. I wish...

Can I pick your wise brains? No diagnosed ED here, but clearly an unhealthy relationship with food. DD is 16, ongoing mental health difficulties (depression, self-hard, suicidal thoughts). She has gone through phases where she hardly eats, and times where she makes herself sick, I've always seen this as another form of self-harm.
My main issue at the moment is a very specific one - classic example today, haven't eaten lunch and would like something to eat after school. We pop to McDonalds for a mid-afternoon snack, and she orders a two whole meals, an apple pie and an extra cheeseburger.
How should I be reacting? I'd spend whatever I had if it actually helped her feel better. But I presume this is to overeat and then be sick. It's just not an appropriate amount of food to order, but any comment is met with fury about my insensitivity. I feel like a total mug who just shuts up and buys her whatever she wants even though it's a bad idea... Guidance appreciated!
Apologies if I've said anything wrong, I've not previously posted on the ED board, and am very conscious I need to do more research on the subject.