Teen Eating Disorders - Thread 5

[myrtleWilson]

Welcome everyone,
Our last thread can be found here
www.mumsnet.com/Talk/eating_disorders/4279530-Teen-Eating-Disorders-Thread-4?watched=1&msgid=111172926#111172926

That we're on thread 5 in about a year is a reflection of the incredible increase in mental health issues, including eating disorders amongst young people over the last couple of years.

With that in mind, we thought we'd try to include some resources that have helped us along the way to date. No one resource will be a panacea but hopefully this list will be a useful starting off point for any newcomers and a reflection for others. It is our first go at sharing a list of resources on a thread so it won't be perfect!

www.beateatingdisorders.org.uk

anorexiafamily.com/?v=79cba1185463

www.youtube.com/evamusby

www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA

www.orri-uk.com

www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/eating-disorders/overview/

www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf

People to look up on social media
Hope Virgo
Ro-Recovering
James Downs
Cara Lisette
Adam Fare
BarefootRebel
Ilona Burton

Girlie hope Covid is not too bad for your DD

Betty - great news on a gain!

dark how are you doing?

Thank you @Lougle & @Girliefriendlikespuppies
Oh my goodness she’ll be furious if she can’t do her sports. I hadn’t even considered that would be an issue. It may perhaps give her the impetus to eat though? Does it work like that?
She’s 12 years and 8 months. She’s always been slim but rarely weighed so I’m not sure how long it’s been going on. She’s always done a lot of sports other than last year due to covid/school mixing etc. She was certainly eating well during lockdown / home schooling and did no sport. Last year she did no extra sport as it was hard for her to get to school, let alone stay back for sports. She was also diagnosed with ADHD last year and started on stimulants that can reduce appetite albeit only for a few hours, after which she should be ravenous. But maybe it’s a culmination of re-starting sports, appetite suppressants and being a very picky eater that it’s showing up now and haven’t picked up on it until now.
I raised it with her tonight and she agreed that she doesn’t enjoy food and thinks she may have some body dysmorphia. I was really surprised as I thought she’d be annoyed about the appt and vehemently disagree. I’m pleased she’s willing to seek help.

Complex anorexia is an illness that is caused by weight loss; the fear of food, irrational thoughts, desire to exercise, obsessive behaviours all kick in once the brain starts to struggle due to lack of nutrition. I don't think people really get that, I think most people think the anorexia causes the weight loss when actually it's the other way round. Your dd definitely needs to stop the exercise and massively up the food intake, I'd suggest she may even need to come out of school until a routine and weight gain is established.

I've had a really tough evening, dd has had a crap week at school and it all came out tonight. Some of her 'friends' have been really unkind and there's been some teasing about the fact she's not got a Dad around. Why do kids have to be horrible to one another?! It makes my blood boil.

I've got a big meeting with both Camhs teams tomorrow which I'm feeling anxious about. I think they're both wanting to discharge her 😓

I hadn’t realised that thank you. I’m just reading the beginning of the thread and working my way through. There’s a lot I don’t know.
So sorry to hear your DDs ‘friends’ are being vile. Makes me livid. Why are ppl so cruel? Hope your meeting goes well tomorrow and you get the outcome that you need/want.

@Girliefriendlikespuppies sorry you're having a tough time again.

I agree with girlie @ComplexNeeds. There's a theory that some people are genetically predisposed to eating disorders and it's the weight loss, however that comes about, that allows that predisposition to be realised.

I'm having a real struggle with DD1's school. I send a snack box in for her, which is kept in a teacher's office. Two days ago, DD1 took the snack box in and didn't hand it to a teacher. She got peckish in maths and started tucking in. Nobody told her she shouldn't. Then yesterday, she left first lesson, went to the office, took some popcorn and brought it back to class to eat. I challenged her on it and she said that the teacher said she has permission to eat in class and that she 'stress eats'.

I am not happy at all. They need to help her to follow school rules, not just do what she wants, when she wants. There was no way she needed to snack on popcorn at 09.30 in the morning. Then she's avoiding proper meals.

I bet school are thinking they’re being helpful and kind lougle Nightmare.
I’m still reading through the thread and wondering if you count their calories? I’ve never dieted so have no idea how many cals are in foods. Are you given guidance on products? I bought a box of ‘protein yoghurts’ with my usual online shop thinking they’d be high energy but they’re low fat

I think there are some apps that can help but otherwise it's checking labels complex. For me double cream was life saving, it packs a really high calorie punch and can easily be added to porridge, milk, soup, eggs, mash potatoes, sauces and most other dinners. That and butter which is also great for adding to things.

There is some debate on here about the rights and wrongs of adding fats to food and I think the general consensus is go with what feels right for your child. My dd stays out of the kitchen and has never raised any suspicions around what I give her so it's worked well for us.

My fitness Pal is free and you can scan barcodes so it will count for you. Your DD will need at least 2000 calories to gain, if not 3000 because she's exercising.

I’m still only on page 5 of this thread but making notes as there’s so much to take in. I’m already adding cream to foods. Have done that for a while. DD happy for creamy pastas and porridge. She’ll even have a donut (or two). But wouldn’t eat a sandwich for example - just a quarter. So like many others I’m reading about (girlie,lougle, moom), I’ve been trying to give her small amounts that pack a punch. Whilst these are probably high calorie and sustaining her somewhat they’re not nutritious. She does has vitamin/mineral supplements (well teen). Reading your posts has been a real eye opener for me. Because she eats high calorie foods quite happily I’ve dismissed any notion of her having an ED. Yet the amount she eats is woeful.
Appt with nurse tomorrow. I’m worried she’s going to fob me off when we say what she will eat. Is she likely to do the ecg and bloods there and then? If she does agree to make a referral how long does that usually take please?
Thank you so much for your help and support. Not just here and now but being able to read through past posts is so very useful!

@ComplexNeeds DD1 hungrily ate a bowl of Coco pops when she was offered it by the nurse in the assessment ward. She was still admitted for 9 days until she was stable on a meal plan.

They use <a class="break-all" href="https://www.google.com/url?sa=t&source=web&rct=j&url=www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf&ved=2ahUKEwiXs_uk8MD1AhWBi1wKHdzABz4QFnoECAYQAQ&usg=AOvVaw2O12G8fmaHr5gOmRkyh7hU" rel="nofollow" target="_blank">This framework to risk assess the patient.

That’s so helpful thank you!
I’d not thought if my fitness pal - great idea!

I’ve just collected DD3 and today she’s had…
B’fast 730- 2/3rds yoghurt pot
Lunch 1pm carrots (nothing else as chicken had bone)
4pm Into town with friends Taco Bell chips and churros
6pm 3 x mini wispa (thumbnail size) during sports
730pm Refusing dinner of pasta bolognese
This is absolutely typical.
@Lougle does your app suggest she should be 36.5kg if 12yrs 8 months and 142cms please? It’d be interesting to know what the 100% would be. Huge thanks!
How did your big meeting go @Girliefriendlikespuppies
And did you get a chance to speak with school @lougle

It sounds like it might be atypical anorexia which is what I think my dd has complex my dd never stopped eating completely and still ate biscuits and chocolate but it was very disordered. At the point of being referred to the ED team a typical day was no breakfast, a small lunch perhaps a sandwich and a piece of fruit and then a normal sized dinner and milk and biscuits in the evening. She was probably having around 1200 cals at her worst but she had also massively ramped up the exercise.

She lost weight, periods stopped and hair was falling out 🙁

If that's all your dd is eating she should definitely not be exercising, it's nowhere near enough to sustain her. I would stop all clubs and work on 3 meals plus 3 snacks, life stops until you eat.

The fb group is useful EDSUK for advice on FBT (family based treatment.)

My meeting was okay, about what I expected. Dd has been discharged from both Camhs teams so we're on our own now. Fingers crossed I can keep her moving forward...

@ComplexNeeds

I’ve just collected DD3 and today she’s had… B’fast 730- 2/3rds yoghurt pot Lunch 1pm carrots (nothing else as chicken had bone) 4pm Into town with friends Taco Bell chips and churros 6pm 3 x mini wispa (thumbnail size) during sports 730pm Refusing dinner of pasta bolognese This is absolutely typical. *@Lougle* does your app suggest she should be 36.5kg if 12yrs 8 months and 142cms please? It’d be interesting to know what the 100% would be. Huge thanks! How did your big meeting go *@Girliefriendlikespuppies* And did you get a chance to speak with school *@lougle*

37.41kg would be 100% if she's exactly 12 years 8 months and 142cm.

Tbh, from your description today, I'd say:

~She's started breakfast but wasn't feeling it, so left the rest. 50 calories there, perhaps.
~The bone put her off her lunch (is this something you already knew?) Carrots - around 20 calories
~The 4pm late lunch would have been around 350-400 calories
~3 x mini wispa 147 calories
~Refused dinner - 0 calories.

So total calories, if we give a generous 50 for the part yoghurt pot, 620.

She's doing 2 hours per day of physical activity, plus school, on 620 calories.

We have had an up and down kind of week.

On the plus side dd has gained 1kg which is the first time she hasn't lost weight since the GP first weighed her on Nov 3rd. I was amazed, and delighted, as she has had such a hard few weeks. Despite feeling awful she has stuck rigidly to her meal plan, and she's been able to eat a bit more some days. I haven't told her about the gain, I really couldn't judge how she'd take it at this point.

Another plus, she has gone from 25 to 50mg sertraline today, we saw a slight improvement even on the very low dosage for 10 days, so I'm really hopeful that her mood will start to improve soon, and the crushing anxiety will begin to lessen. The GP prescribed her a beta blocker for the pounding heart, I was so excited (!) that it would help will the physical symptoms of anxiety, but it hasn't made any difference so far.

The panic attack/rages had eased off a bit, but she had a terrible one yesterday when we got home from the GP, I suspect because the doctor was really upbeat and optimistic about the sertraline helping her, the ED voice really hit back at her with a vengeance.

I am absolutely worn out today, I can't leave dd alone for more than a few minutes, in case the anxiety overwhelms her and she starts hurting herself. I hurt my back yesterday trying to hold her, usually dh comes to help me but he was on an important work call, so I was on my own. I really am so fed up with Anorexia and how it has ruined our lives. I'm so grateful to have this space where I can actually say that and know that you'll understand what I mean.

@LizzieDarling I’m new to all this but crikey it’s hard isn’t it? Hard to see our children suffer and be furious with us. Exhausting worrying and trying to protect them. I’m only at day one with DD. You’re doing a great job. Sounds like your GP is ok. Is he doing all the care or has she been referred to an ED clinic.
We saw our GP yesterday to ask for a referral to ED clinic. She didn’t weigh DD3 or anything. No BP. No nothing. She said she’d do the referral form today (yesterday) but then rang later to say I needed to arrange bloods to be taken before she could do the form 🙄 our GP surgery is dreadful at the best of times.
My eldest had a bit of a wobble yesterday too. She has MH issues and attempted suicide a few times last year. I’m really concerned that any conflict with DD3 and I is going to cause DD1s MH to deteriorate. I’m going to have to really watch everything. Why’s nothing ever simple?

Lizzie that weight gain is brilliant but I'm sorry your dd is struggling so much. I hope the meds increase will help, it's completely normal to resent the anorexia and your child at times for bringing it into your lives. It's so shit.

Complex well done on making the first step. Definitely start 3 plus 3 now, the Eva Musby book is useful on things to say when they refuse to eat, she's also done some YouTube videos. Basically though your dd only has a life if she eats (which is true in all senses of the word life.) No school, no exercise, no seeing friends, no going out unless she eats. It's pure hell but ultimately life saving.

We're slowly crawling to the other side of it now, dd is weight restored plus some and routinely eats 2500-3000 cals a day. Last nights dinner was a veggie cheese burger with chips and salad (which included a lot of avocado) pudding was an Oreo milkshake which was around 8 Oreos, a decent slug of double cream, ice cream and milk. She ate it all (bar the smallest amount) and enjoyed the milkshake.

It's still early days but I have that glimmer of hope that she will be okay and we will get passed this.

She's had upsets at school this week, lots of tears over a friend not being nice but I've not seen any pushback on the eating and I've felt this is normal teenage stuff rather than the ED stuff which is not normal iyswim??

Still lots to work on though including the fact that I still make and prepare everything she eats at home and the rigid rules she has around eating....

Anyway for those of you at the beginning of this God awful journey keep going, keep pushing food and hold onto the knowledge that your child is in there and really really hungry!! It's just the ED that doesn't let them eat.

"Anyway for those of you at the beginning of this God awful journey keep going, keep pushing food and hold onto the knowledge that your child is in there and really really hungry!! It's just the ED that doesn't let them eat."

Absolutely. Even today, with DD1 fully weight restored and on meds, she kicked off about lunch. She said she couldn't possibly eat lunch because she was too full from snack time, and if she did eat lunch she wouldn't possibly manage dinner. We said 'not to worry, we can make dinner a bit later for you.' Eventually, she ate lunch (all of it).

I found the easiest thing was to make it less personal by saying 'it's the rule' or 'the hospital said....'

For those of you with children at or nearly at 100% wfh, do they still stick to the meal plan?

@NCTDN

For those of you with children at or nearly at 100% wfh, do they still stick to the meal plan?

No. We still stick to breakfast, snack, lunch, dinner. Afternoon snack is hit or miss depending on how tired she is. We dropped evening snack when she was about 90% WFH.

I don't calorie count but I do have a rough idea of what she's eating. I tend to go with the scales and her behaviour. If her weight dips or her attitude to eating changes, I become much more careful to ensure she's eating well. If her weight is steady and she's happy to eat, I let her roll with how she's feeling.

@NCTDN

For those of you with children at or nearly at 100% wfh, do they still stick to the meal plan?

Pretty much, I'm going on state not weight and we're still not quite there yet. That said dd doesn't have a morning snack and I count pudding as her evening snack. I still try and pack as much as I can into what she does eat though.

We're in a situation now where I don't know what dd weighs and other than taking her down to the Drs have no way of knowing. In some ways this is useful as takes the focus off the numbers and places it back on her mental health. That said it's obviously risky as wouldn't immediately know if she'd lost weight...

I still haven’t read the whole thread - on page 13. You ladies are amazing!!! It’s been a huge eye opener reading your posts and a realisation how difficult this is likely to be.
UPDATE - we saw the nurse (not GP) at the surgery on Friday first thing. I explained that I thought DD3 has an eating disorder and I’d like her to be referred please. I told her the weight and height and a bit about her eating habits and scheduled sports. She said she’d refer later that day. She didn’t do height, weight, Pulse or BP. Nothing whatsoever and zero mention of ECG or bloods. But this was all before I’d been on the FB EDS group and found out what should have happened otherwise I would have queried. I was later called asking to make appt for bloods and they could do at the surgery in 3 weeks time. Seemed delayed to me so I’ve booked online out of area for them doing tomorrow. I asked about ECG but the surgery had no clue. I plan to call them tomorrow after bloods are done to chase up and ask what happens next. I know they can do an ECG at the surgery so I’ve no idea why that hasn’t been booked in.
Meanwhile I’ve been recording her eating in My Fitness Pal and it’s perhaps not as bad as I thought albeit she knows I’m doing this so maybe eating more. It was 600-800 Thurs & Fri as didn’t have school lunch. But 1300-1500 today and yesterday. Predominately sugar. She’s currently making choc chip cookies (to take as pud) and prior to that prawn gyoza (of which she had 1). Ive talked to her about stopping sports and she cried. She’s happily discussed what will go in her lunch box for snacks and lunches each day. And is already eating the biscuits she just made.
My plan is everything continues as normal but she has 3 meals plus 3 snacks. She stops school lunches and takes in packed, which I have some control over and know what she’ll eat. This will include a ‘pud’ (which is a first as we don’t really do puds). She will also take in two snacks. I’ll record everything on MFP so that when we do finally get the referral I have some data to provide. I think this will highlight her food issues, such as refusal. I’m still not sure if she has an ED or has got into bad habits - I think this will help clarify. I keep thinking about previous posts saying ‘weight or state’. Looking at ‘state’ DDs ok - glossy hair, very active, doing well at school, reasonably happy but very skinny. She does take multi vitamins and omega so maybe that’s disguising a lot?

Oh gosh that was so long! Sorry!

@ComplexNeeds - you're doing great, really you are. Apologies if you already said, have you had a conversation with school? If not, I would recommend - my DD's school have been amazing, really flexible around her needs.

Can I ask a question about cognition - how bad did/has it got for your DC? DD is now weight restored, self harm free for a few months and doing well with new recovery programme. However, her cognition is nothing like what it was - it feels like her cognition took a hefty whack from the anorexia (at its worst she couldn't read anything, couldn't concentrate etc) am just wondering if anyone has read anything about cognitive recovery alongside physical recovery?

@ComplexNeeds well done. That's a great start. 1300-1500 is still in pretty severe diet territory though (minimum recommended calorie intake for an adult woman who is dieting is 1200 calories).

I think what will make it clear re. just underestimating calorie needs or eating disorder, is how your DD reacts to you saying that she needs to increase her intake. 1000 calories isn't actually all that much, though, so you'll be able to up that quite quickly. I used to make a batch of pancakes for DD1 for breakfast that was 1500 calories by the time I had used duck eggs, double cream, butter and golden syrup.

That’s exactly what I’m thinking. Once I know she’s having 3+3 I can then ensure those are gradually higher calorie/fat. As I mentioned she’ll eat cake, biscuits etc - veg on the other hand! That’s why I’ve pushed vitamins for yonks. We’ve written on our menu board 3 choices for bfast; 3 for lunch and a long list of snacks to choose her 3 from. I will dictate dinner. She was absolutely fine about it. I’ve said she needs to feed her brain & organs - nourish them. Words you’re all using rather than ‘weight’. She’s so far accepting but I’m not entirely convinced to be honest.
@myrtleWilson I’ve not raised with school as yet. We only saw the surgery nurse on Fri. If she’s diagnosed I will. DD1 was at the same school last year and they were absolutely appalling when we told them she’d attempted suicide - they suspended her for two weeks. So I want to get all my ducks in a row and know what ‘should’ happen before I involve them. I’m really hoping this isn’t an ED as we are still managing DD1s MH. She’s ok(ish) now but She’ll really struggle with any conflict!
With DD1s MH I used a ‘partnering not Parenting’ approach, which definitely worked well but it seems with EDs it’s very different. I guess due to the denial.