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?

@Bettybarkalot123 oh god I hit a wall so frequently. @Rollergirl11 is right with the utter tedium, drudgery, boringness of it all - weirdly when it's going OK is almost the worst as there's no adrenaline, just day in day out boring bloody planning, buying, preparing and pushing food.

I'm sure your dd's weight gain is better than mine - less than 3kg in 9 months! That's a bit unfair as it was actually 3 kg in six weeks initially but since then it's been up and down, up and down. It's been four or five weeks of consistent gain (but small,

PS @myrtleWilson your evening of cocktails and dancing makes me very happy! How fabulous.

That's so true valley there is definitely not a one size fits all approach to treating EDs and yy to being an expert in what works for your child. I remember reading that you absolutely should under no circumstances praise your child when they've done well with food. My dd found that approach really disheartening and said 'why do I bother when whatever I eat is never good enough for you.'

I now do say well done if I can see she's made an effort and she appreciates it a lot more.

Hi all, update from me. DD still in hospital and has now been there for 10 days. ED clinic staff member came to see her on Friday. Talked through what she's doing to herself, which she knows anyway.

Despite constantly asking from me they haven't reviewed her sertraline.

She is compliant but reluctant and had a tube feed a few days ago. Not in a great place, wouldn't speak to me for most of today.

i had to take DH to A and E (at least I was going to hospital anyway = rolls eyes) he had some kind of gastric episode and was up all night. His heart rate is very low - around 35 - 40 resting pulse and they are worried about it, he has slept and is now feeling better, so we left the hospital at about 2 as DD asked us to leave her alone.

She's only on 2000 calories and it just isn't enough. No afternoon or evening snack and no juice at meals. I have asked and asked for this to be reviewed so I will ask again tomorrow!

I don't want her home until she's on three + three and juice with meals.

And now I have to find fuel - thank god we have a hybrid. 24 mile round trip and our car will do 20 on a charge.

Hope you are all ok. I feel like I'm treading water.

DBE

PS to add my DD HATES being praised. "Well done" is the worst thing you could say after a meal and the bloody nurses keep saying it! I know it's an automatic thing but it makes her feel so guilty.

@DarkBlueEyes my daughter also hates being told well done at the end of the meal. She really shouts at us.
Glad to hear your daughter is getting help. It sounds gruelling for you all. X

Good to hear from you @DarkBlueEyes. It sounds like she's trying, but I agree that 2000 calories isn't going to be enough.

DD1 is doing better. She's still feeling a bit unwell but her appetite is back. We drop her Olanzapine completely on Tuesday.

A big help is that we now have a learning disabilities nurse who seems to be very committed to helping her and is advocating for her with school. School seem to have really started to understand that she needs lots of help. They've been confused because the help she needs changes all the time, but that's just the complexity of DD1.

It definitely showed that all are different and one rule for one doesn't work for another. DD needs the praise and the acknowledgement that she's doing well but the clinic haven't given that to her on weight checks. She saw a paediatrician there other days and it was lovely to hear the priest and to be told how well she is doing.
I'm so anxious even though we're on the way to recovery- I think the stress is now taking it's toll on me and I'm going to the go to see if I can have some meds.
Dark why aren't they giving snacks? We were categorically told that she needed something every three hours and no longer than that in between.

Going to try a vanilla milkshake for morning snack today with lots of ice cream. We’ve tried smoothies for snacks but I’m thinking a milkshake would up the calories!
Hope everyone has a good day. I woke with a feeling of impending doom! 🤨

Oh god it's all gone to pot here. She refused her evening snack yesterday and has refused breakfast this morning. Says she's disgusted by her body, she's not 'properly underweight', she's not a 'proper anorexic', everyone on her 'for you' page is sicker than she is.

Think I'm going to have to take away her phone. Everything just gets taken away until there's nothing but her and the ED.

It's so mad. Just listening to her say that she needs to get dangerously underweight in order to have a reason to eat. We are so close to going back to school, to a semblance of normality. It's like she's self-sabotaging. Just as I had some glimmers of optimism. I don't know how long I can keep doing this.

Oh no valley what's a 'for you' page? Yy to taking away her phone, they're bloody toxic at the best of times. I know you probably don't want to hear this but the fact she's kicking off means the ED knows it's under pressure, it knows you have the upper hand. Keep going.

I felt really low last night, saw another horrible self inflicted bruise on dds arm 😞 it's just soul destroying, she looked so empty and lost when I tried to talk to her about it.

It's fucking shit.

Just quickly name changed (lurker) in case the info could help any of you but the for you page is TikTok which has really poor form with pro content and can be extremely triggering (sort of like tumblr was.)

@Valleyofthedollymix sorry to hear you've hit a bump. Can you perhaps delete tiktok off her phone, or else the phone goes? We use Nest wifi and are able to control when the kids can access the internet, at least that means if DD doesn't eat internet goes off etc here
Hopefully, the ED will realise you mean business and she will eat soon.

@DarkBlueEyes I'm glad DD is still getting the help she needs. Can you perhaps put a sticky note on her chart "Don't praise after eating" ? I'd be speaking to the head nurse and demanding that DD is given all 3 meals and 3 snacks..... otherwise youu're going to be in there a very long time. As you say she can't come home anytime soon as she's not eating a full meal plan.

@Bettybarkalot123 that would like a good plan if she will eat it. you can also get vanilla protein shakes (powder form) and you can make that up and include ice cream... perhaps DD would feel better about drinking a protein shake rather than a milkshake?

I've also been making overnight oats for breakfast and using 3/4 double cream, 1/4 milk and a dash of vanilla plus a dash of maple syrup. DD loves it! I add a tablespoon of peanut butter sometimes too. It is an excellent breakfast.

@Valleyofthedollymix I think that's the cruelest thing about ED.

@Girliefriendlikespuppies I totally needed to hear that thought that maybe she's kicking off because we're finally beginning to vanquish the stupid ED.

Yes 'for you' is tiktok and once a user has ever searched for diet stuff it will carry on pushing it in a self-fulfilling prophesy. I think her 'for you' page is clearly full of anorexics, including in fact her cousin who got promoted on her tiktok (she's in hospital).

I've just had to turn some work down as I just can't commit to this particular thing as it involves lots of other people and it's in half term - I just know that the ED will sense that I am committed elsewhere and use it as an excuse to not eat. And my temporary crown has just come out.

So a good Monday.

@DarkBlueEyes thinking of you. I know it must completely grim being in hospital but I sometimes wonder whether we've made things worse and more prolonged by avoiding hospital (other than two nights). I really want to keep her out of an inpatient unit but at the same time perhaps she needs it in order to realise finally that she is a 'proper anorexic'. Really hope this is the bottom that you needed to reach in order to make the journey upwards and onwards.

It sounds like she's seen something v triggering valley, social media has so much to answer for. Hope the rest of your day has been a bit better.

Hi all, sorry I haven’t been back for a while, just find it so hard reading about other people’s struggles sometimes as it’s so upsetting.
We’re no better here.
DD isn’t at school and I’ve been signed off work to care for her. I have to constantly monitor her eating and supervise her, it’s just exhausting.
She feels faint all the time and sick. Had another set of bloods taken on Friday so awaiting the results and got ED clinic tomorrow. Praying for a gain but I really can’t see it happening.
Thinking of you all on here.

Also check that definitely not on pro ana website.

And following any “recovery” Instagram

Or “what I eat in a day” Instagram

Still so horrible for everyone. I can't remember who is it with their child who has been in hospital longer than dark? Apologies I can't remember your name but I hope you're doing ok.

A very mixed day here.. had a hugely helpful chat with the dietitian today. We spent over an hour on the phone and I got more insight and motivation and reassurance from her than I have in the numerous calls with our ED nurse. She said she’d been treating anorexia for over 20 years and she swore that in her experience even after a couple of weeks of solid weight gain, she found mental health did start to improve.
She told me to put my boxing gloves and get properly fighting with the illness. No negotiation, no backing down.. even if she screams the house down.
She told me how many calories were in a tablespoon of cream.. I actually didn’t realise. Even though you guys had said, I imagined having to add half a cup full!!
Today after our call I stood totally firm, through the screaming and shouting and f words and eventually DD ate a huge bowl of banana and custard after her lunch (instead of her usual oat yogurt and strawberries). Then tonight I added two tablespoons of double cream to her hot chocolate and she didn’t even notice. Her brother did a great job of distracting her with his silly dancing and rude jokes. Their relationship has never been good but he’s been so kind to her. I’m proud of him.

I also spoke on the phone to the clinical lead, we arranged a teams call for tomorrow and he said, presumably the Ed nurse told you to give DD vitamins with minerals to keep her electrolytes stable.. I said no, I’d never been given this advice. So now she will have a multivitamin with minerals each day.
I feel empowered for the first time in a long time, despite the screaming and shouting. DD had gained 200g at weigh in but her other were very good and healthy.

Betty the dietitian advised me to get dd on one of the A-Z type vitamins, I give dd the Boots own one and I also give her a high dose probiotic as there's evidence that gut health has a direct impact on mood etc.

That's brilliant you felt empowered, well done!! Double cream is amazing for packing a calorie punch 😁

I need to put my big girl pants on again as dd left half her breakfast and half her dinner 🙄

@Girliefriendlikespuppies thanks I’ll try some probiotics too. I just got the Sainsbury’s a-z with minerals.. He said it was the minerals bit that was important. It sounds so obvious but I just didn’t really think about it.

That's great @Bettybarkalot123! Yes, DD1 was on strong vitamins and thiamine for 10 days at the beginning, then just Sanatogen A-Z, then her calcium and vit D dipped a bit so we added in Calcichew D3 forte. Now she's weight restored I've dropped the vitamins and Calcichew.

DD1 took her last Olanzapine tonight. I guess we'll find out if it was the right move in a few days.

This is what I give dd, I've started taking them myself as well! Not sure I can see much of a difference other than our hair grows v quickly 😬

@Bettybarkalot123 our ED nurse gave me a similar pep talk as your dietician ...and we have gained 1kg in 3 weeks which I am thrilled about. The advice was to keep challenging the ED, keep stepping it up. Seeing those reactions is exactly what is needed. I knew this before of course, but easier said than done. But a firm but kind good talking to really helped me!

She's gained 2kg in total now (over 3 months) and I just feel there's been a slight change in her thoughts recently for the better. And she doesn't seem quite as sad.

Long way to go though.