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?

@myrtle thank you for your reply, I am saddened to hear of your DD current situation. It seems that ed are such an unpredictable rollercoaster and having read through these posts I am in awe of the strength you all have in working with your DC. It feels like we are at the beginning of a very long journey here at the moment and it is already very overwhelming. Tonight has been particularly challenging. In contradiction to what has been said here, the school have advised yesterday that we 'keep everything as normal as possible'. Her mum managed to get another GP appointment yesterday and they had a quite angry and hurtful DD because she had not lost enough weight. The dr was different than last time and seemed to be focussing on more than just the weight and registering DD overall attitude and denial of an issue with current eating situation - which was positive, but there was no mention of anything like what was mentioned on here. My OH is currently trying to decide whether to essentially quit his job in order to provide a single base for his DD here and provide the 24/7 support suggested here. DD has a blood test and ecg due tomorrow but it feels like every day counts, she is still refusing to eat breakfast and lunch and ate dinner tonight at her mums - crackers, plain noodles and cucumber - but this meal was only eaten as part of a deal that she can go to a drama class - 3hrs long - on saturday and still attend school if she eats evening meals and a bowl of porridge on saturday before her class. Our feeling based on what has been said here and what I have read on the facebook group suggested is that this is the totally wrong path to follow but her mum is taking the brunt of DD atm and she just wanted her to get some kind of food into her, it took a number of hours to get her to eat this food. But with the prospect of OH quitting work this is a very big decision to make when school / dr are suggesting carrying on as normal and have made no suggestion of anything like 3+3 or forcing the issue - maybe this is purely because she hasn't done the other physical assessments yet and the fact that she is currently not underweight. I know it was advised by @Girlie before but should we wait for the results of the tests and hopefully a refer to a clinic to get a proper plan and support - we have no idea how long this will take - or do we take her out of school against the school advice and have my OH quit his job tomorrow? We have been going round in circles about this for the last 3 hours and still don't know what the best thing to do is.

Mama can you self refer to your local ED Camhs team? Will school supervise lunch and snacks? 3 plus 3 is standard advice for any child with an ED and it is absolutely imperative your step dd does not lose any further weight.

Re your dh can he take a period of sick leave from work? That's what I did a couple of times to get dd started on FBT.

@myrtleWilson I missed your post about your DD. I'm sorry things are so difficult again.

@myrtleWilson I'm so sorry too that it feels like your DD has gone backwards. You've been so generous with your help and advice on this board and I'm very grateful. I'd love for karma to kick in so that your DD recovers completely. And soon.

@mama1644 - your DH should be allowed to take compassionate leave. It does take someone around pretty much full time initially, unfortunately so he needs to work something out with her mother. DD eats really slowly (a hallmark of ED) so three meals and three snacks is a loooooooong time. We were also told to stay with her for half an hour each of them in case she was purging. We don't as I'm as certain as I can be that she isn't but did do this initially. Mostly because the self-hatred and guilt was at its highest after eating.

DD put on no weight this week which means only 600g over the last four weeks. However, she's not losing any and she's had massively increased output by going to school every day. I'm not too concerned because her attitude seems so much better. She talks about recovery positively and is setting herself goals. I'm worried about her period coming back as I think that'll be a green light to keeping her weight at whatever point that is. So I'm crossing fingers she puts on at least another 2kg - her period came back in February at a lower weight than she is now.

My dd (17) has just confessed that she has binge eating disorder. I've suspected for years but she's finally told us and the dr.
She has been referred to an eating disorder clinic and has a lot of blood tests to take.
She's a size 26 at 5ft 6. I'm so worried about her and feel a bit helpless.

@sonicshoegazes poor you, you must be reeling. I hope you'll find support here although her eating disorder is taking a different form from the majority. All our children share an unhealthy, emotional relationship with food.

Hi @sonicshoegazes - my thoughts go out to you. There is a good resource on Orri's website for binge eating disorder (link below)
www.orri-uk.com/resources/

I would also suggest their vimeo channel vimeo.com/orriuk for both you and her.

Wishing you all the best.

So sorry to see new joiners it’s a bumpy old road you’re joining us on that’s for sure. I’ve found the support here invaluable though.

Myrtle so sorry your dd has slipped back, I hope it’s only temporary and she’s back in a better place soon.

Hope everyone’s mocks have gone well this week.

Had CAHMS appointment today and the nurse is asking the psychiatrist to review and consider medication for dd. I do feel she needs it.

He has spoken with work today and they have been very supportive which is good to hear especially as he was supposed to have the whole of Dec off to work round when our son is born.

I have spoken to a person at the best charity today and they also provided the same advice as the gp.and school are currently doing which is not to try and implement these eating plans without a referral to a clinic. They said it could make things worse in terms of her mental state. We are just left feeling so conflicted. It feels like doing nothing could be disastrous but we have no idea how long a potential referral might take. Mum has spoken to go again today regarding additional self harming behaviour and did get advice re taking to a and e if she doesn't eat for a few days or intake is very low. Thank you all for your responses. I apologise for all the lengthy messages. Today has been extremely emotional all round and we just feel a bit useless. My colleague has suggested a private psychiatrist.... in your experience might be a better route forward if nothing transpires following these tests tomorrow?

That should be beat charity.

Hi @mama1644 am glad his work is being supportive. What a stressful time for you all, especially with the baby.

I think managing 3x3 at the moment may be too much of a jump from where you all are (emotionally and psychologically) and there is risk to your SD if she's been very restrictive and then suddenly eats more (it is called re-feeding syndrome). I'd focus on not letting her restrict any further.
Sometimes a private therapist can be a good 'holding pattern' I don't know whether it was fortuitous but our therapist rang the GP to make an urgent referral and to suggest the GP considered an emergency bounce into CAMHS - I think our therapist was known to the GPs etc so maybe her saying something was received differently as they knew she was using her professional judgement (not that should be needed but you know what I mean...)

Mama have you checked if you can self refer to an ED team? In some areas you can, once the initial tests are done in theory the wait from referral to being seen should be no longer than 3 weeks. I'm really surprised Beat gave you that advice, I suppose if you can hold her at her current weight and ensure no further weight loss then that might be for the best until you can get her seen by an ED team.

What I would say is that all the evidence shows that FBT and hitting it hard and fast gives you the best chance of getting her well again.

My dd had her covid jab today, she's currently stressing out as has a history mock tomorrow. I'm praying the jab doesn't make her feel ropey...

Hello everyone, I have been away for a few days as it's a mad house here,@myrtleWilson I'm so sorry to hear your DD has gone backwards and send you all my best vibes. Hello to everyone new and I'm very sorry to see you here, but hope you'll find this thread as helpful as I have.

Mixed results from us - weight is on an ok trajectory (now up to 88%, 900g on last week, God knows how with three meals missed) but state is DREADFUL. We've had throwing plates, food, telling me to F Off, refusals galore. We were back in A and E on Sunday ("they won't do anything as I've put on so much weight"), luckily they said they'd admit her if she didn't eat a sandwich. So she ate a sandwich... They figured out I was the mum that baked them muffins and I am apparently welcome any time!

Monday was ok as we went to Six in the evening and she knew she had to eat. Tuesday she refused her afternoon snack and went batshit, hiding in her room - as she wouldn't eat a morsel of cake to replace the large mouthful she spat out at lunchtime. Plate thrown, food smacked, you name it. Then she slept for ages, and DH bless him managed to get her down and distracted. All because I cancelled her yoga due to non compliance with eating. She did apologise after, but I'm learning I need to hold the boundaries and carry out the threats.

It's been ok since. HOWEVER DH tested positive on a lateral flow today and I'm bricking it as I'm surely going to get it - I don't know what to do! Today I sat in the car with her at lunch with the windows open and a mask on (he was with her yesterday, having tested negative since Tuesday when he found out his niece had tested positive on Tuesday afternoon).

So I'm having to do everything including feed him (he's banished to the guest room until the 20th), feed her, take them all where they need to go etc. God help me I'd never survive as a single parent.

I guess we're all going down..... but in the meantime I'm rattling with all the supplements etc I'm taking and supervising meals from 2m away, with mask on...

I am feeling slightly like I'm getting a cold so I am preparing for the worst but I have no idea how to deal with her lunches, as one of us drives to school and has lunch with her in the car. Today I did with windows open and a mask on (usually eat with her) but I had a negative LFT today, what if I test positive? Would that be out of the question? how on earth do I get her fed?

Anyway, strength and love to you all in this relentless battle.

Welcome to all the newbies and sorry you have to be here
COVID is definitely doing the rounds isn't it, and that doesn't help keeping up the eating.
I feel we've plateaued here and worried things will go backwards. DD wants the independence but portion sizes have certainly decreased when she's making her lunch. I'm getting eye rolling whenever I say anything. Mentally I feel like I'm suffering now as much as DD but in different ways.
I just want things back to normal. Can I ask for that for Christmas?! Though dreading what we will do on Christmas Day

Dark I somehow managed to avid getting covid when dd had it a few weeks ago and was obviously in close contact with her throughout. Are you vaccinated? Hopefully you'll be able to dodge it as well.

Dd is complaining that her arm is 'killing her' this morning post covid jab Ystd. She had a meltdown last night about a few things and it took a long time to calm her down. Bit concerned if this is how she is during mocks that it's going to be a hundred times worse next summer!! She also tried to refuse her vitamins at bedtime but did eventually take them.

NC sorry to hear you're struggling, I know what you mean though, I can feel my own anxiety levels constantly bubbling away.

My daughters been a bit meltdown prone this week too. Definitely the mocks causing the stress and like you, I am imagining the stress next summer!
She’s spent all day on school today, for the sixth form open day. She messaged me at lunch time to say she was worried her soup would smell and the others would make fun of her and could she bring it home and eat it when she got back. So she did.. she said she also had a hot choc and a kitkat.
She had a really good weight gain this week so fingers crossed she doesn’t lose after a really busy week at school.

Hi all, @DarkBlueEyes hope you enjoyed Six, it’s amazing isn’t it, saw it Feb 2020 and can’t wait to go and see it again.
We’re having a bloody nightmare here, DD just got so bad and was admitted to hospital beginning of the month. She spent a week there and ate/drank absolutely everything they gave her and was like the person she used to be but has now been discharged and gone straight back to restricting and being argumentative.
Some days I feel I can’t cope anymore. DD says she’ll never be free of anorexia and never eat normally.
I think she’ll be readmitted to hospital again next week if things don’t improve

Hi everyone, I haven't yet RTFT but I am scared about what is to come from what i have read so far.
my16 yo DD has just admitted to an ED this week and agreed to go the the GP, who was very concerned and has written an urgent referral but I have no idea how long this will take- what is a usual wait time and can i push any quicker?
I’m just learning about WFH now so have no idea what she is - but is 152cm and 33kg at 16 y 1 month, never had a period. She says she is so tired, scared and sad and does want to be helped but doesn't want to eat more until she has been seen by the specialists in case she puts on weight and they don’t believe there is anything wrong with her. She has been eating 400-500 cal per day and has lost a stone since sept.
The GP said she must add breakfast so has been having another 100 cal for the last few days but won’t have any more until her appt. How long is normal to wait? She is very hardworking at school so the possibility that they could stop her from attending school would terrify her right now- she says the restricting food is linked to obsessive studying and she worries that if she relaxes with eating, she will also lose motivation to study. She is also vegan which I can see has been mentioned a few times already. Can anyone help?

Hello @gingerscientist so sorry that you've had to find yourself here. It's crap, it really is, but it's always better to get it diagnosed and to start dealing with it than being in denial (which I was for too many months).

WFH is the percentage that your DD weighs relative to the average person of her age and height. Lougle has a special app but I just do it by trial and error via the NHS app. I think 100 WFH for her is 45kg as she's small, which means she's currently 73% WFH. Under 70% is red light - go straight to hospital and 70-80 is amber and normally there's no school etc at this. The lack of period is also not great at her age.

She'll eventually need to eat around 2500 calories a day split over three meals and three snacks (approx 600 for each meal and 200-250 for each snack). However since she's been restricting to such low numbers she'll need to get up to this gradually - probably having twice what she's having now but half what she'll eventually need for a couple of weeks.

She probably won't be able to go to school. My dd hates this but at least it's a motivator for her.

@SnitchyBitch really sorry about the hospital. It's such a stupid cycle isn't it - admittance, feeding up, discharge, restriction.

On a different note, Six is great. We had to postpone endlessly because of lockdown and then when we eventually went I got so overwhelmed by the crowded theatre and the female joy that I sobbed throughout, much to daughters' amusement.

Ginger google junior marsipan checklist abc take your dd to a&e, she needs admission, urgent bloods and an ecg. She is a massive risk of organ failure, that is a frighteningly low weight 😢

She needs to go to hospital today, she will be a risk of refeeding syndrome and refeeding needs to be be done in a hospital environment, at least to start with.

@gingerscientist Hi, sorry you find yourself here. My DD was admitted at 33kg, I would definitely be taking her to the hospital.
Luckily we saw the ED specialist who works with our CAMHS clinic, who took one look at her and said she was peripherally shutting down and she needed to be on the paediatric ward. She had bloods done, blood pressure, ECG straight away.

Whilst you should go to hospital to get her completely checked out, I don't necessarily agree that she's at imminent risk of organ failure - dd has been 73% WFH and all her bloods, ecg etc were completely normal. Every person is different. I don't want to minimise the situation and she might well be in a critical condition, but DD has never been re-fed in hospital despite twice going down to a similar WFH. In some ways I wish she had been as it was all on us but they've never wanted to keep her in more than just the one night because there was no sign of her being in danger.

Exactly valley and without knowing the advice has to be that she's seen today. My dd would certainly be dead/dying at that weight or wfh.

Thanks for your comments and support, it does sounds a worryingly low weight I agree. I have moved her blood tests forward to tomorrow. She has agreed to slowly increase her cals as she doesn't want to be taken into hospital or even kept off school and I have just spoken to a friend who was a dietitian in the ED team. I will try to contact CAMHS tomorrow to see if they can give me any idea of timescale.

DD was seen by CAMHS the week after we went to GP so they were very quick and we’ve attended weekly since.
Unfortunately, DD can’t comprehend the seriousness of her situation and had also near enough completely stopped eating which is how we ended up at the hospital.
It’s an absolutely shit situation to be in and I look back at photos from the the beginning of summer and cry and cry at the life DD had before this illness consumed her. Wouldn’t wish it on anyone.