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?

Ginger I think you need to start gearing up for refeeding, as I've already said your dd needs to be checked out urgently. Ideally in a controlled hospital environment so that obs, cardiac function and bloods can be closely monitored. Refeeding will be a 24/7 job, if you work you'll need to take some time off. As your dd has been severely restricting and is a dangerously low weight you'll need advice from specialists re how to increase calories. You'll eventually get to 3 meals plus 3 snacks, high calorie and high fat.

She will have to come out of school, at that weight she should be on complete bedrest imo.

If you're on fb I'd recommend joining the EDSUK fb page, they have resources in their files which are v useful.

I hope you do get lots of support - at a similar WFH, we just got emailed a fantastical eating plan and told to get on with it 3+3. At the very least Girlfriend is absolutely right that they'll say no school and bedrest (or 10 minutes exercise a day, which effectively is bedrest).

@HelplessAndLost a refusal to acknowledge the seriousness of the situation is a hallmark of anorexia, isn't it, which just makes it all the harder for them to get better.

Hope everyone's weekends were good. We had a reasonable one until yesterday's 'challenge' snack of an almond croissant which led to a sweary outburst to DH who took it really badly. I think I'm rubbish in that I don't push hard enough to stick exactly to the meal plan, but I think he's too rigid. Sometimes it's worth making a small compromise in order to keep more or less on track rather than risking a full on strike.

But god it's so hard to judge. I know we're entering the danger zone of a 'healthy' weight and the return of her period. Would be such a shame to get stuck at 45kg when she needs to be 48+.

It's worth remembering ginger that anorexia has a similar mortality rate to childhood leukaemia and if you'd just been told your dd had leukaemia I'm assuming you'd have no qualms about taking her out of school for treatment. I appreciate your dd hadn't had a formal diagnosis of anorexia yet but with the severe restriction and extremely low wfh I'd be confident in saying you'll get a diagnosis...

Posted too soon, it is so hard valley I feel I walk a constant line between good cop bad cop!! Dd is struggling mentality at the min, talking a lot about wanting to die again which is awful. Honestly feels never ending and given her weight is so good I'd hoped mentally she'd be better by now.

She's also full of cold and has the bulk of her mocks this week so all in all is feeling rubbish.

I missed her snack Ystd as completely forgot, realised this morning and could have slapped myself!! It's only 200 calories but it feels like giving the ED an easy win 😩

Oh god we've forgotten snacks so many times, really easy to do.

Really sorry that she's so down. We don't have that, as yet, but maybe it will perversely come if she ever does put on a decent amount of weight.

@SnitchyBitch I'm so sorry to hear that. It is so frustrating isn't it? Has there been any talk of a tier 4 unit at all?

@gingerscientist hospital admission oddly was the best thing that happened to my DD. I never thought they'd admit her but I think if I hadn't taken her, she'd be dead now. If you read my earlier threads you'll see how despairing I was. Actually, she might not be dead now, but I almost certainly would be.

Hope you are all ok. Somehow I seem to have managed to swerve Covid! Daily lateral flow tedts since Thursday, a PCR yesterday and on Friday, and all negative. DH is out of his gilded cage on Friday (I cannot wait, I am utterly exhausted), so I hope I can continue to test negative. It's been 7 days since he showed symptoms, 6 days since he tested positive, but I will continue testing until Thursday (positive test for him first thing Thursday).

Both my DDs are testing negative too. I can hardly bear to hope. How on earth could I not have it after sharing a bed with him for 5 days after he was exposed/infected? We are both double jabbed, my booster is tomorrow.

Update- it’s all been very overwhelming so far. We have been triaged by CAMHS yesterday and today had a call from the eating disorders team who are seeing us on friday morning for the first assessment. We also had the bloods done at the hospital yesterday and the ECG is booked from a couple of weeks time. When I explained to DD that she might have to come out of school or go into hospital, she said she didn't want that and would do whatever was necessary to prevent it- so has been eating a lot better since- having 3 meals and snacks, she is convinced she has put on weight already but I don't think so- we will find out on friday! She says she is ready to give up the control and pass it to me and will eat whatever I tell her to so I’m pushing on with that (fully expecting this might change in the future though). Is there anything specific I should ask about in the assessment on friday?

@gingerscientist personally I would insist on blind weighing as knowing their weight can stress them out as I discovered to my cost. Use weight for height but don't discuss with your DD.

The eating disorders UK Facebook page is a mine of info too. Good luck! Use every bit of leverage you can. If she's under 80% WFH they will say no school. Just so you're prepared.

@DarkBlueEyes she has already said she doesn’t want to know her weight so I will tell them that. Yes I joined a fb group it was quite troubling- I think she probably is still below 80% wfh so it’s going to be a difficult visit if they insist on no school 😞 is there a minimum time or is it until she reaches a target wfh? She has mocks in 2/3 weeks

It's as long as it takes. My DD was mortified she couldn't do school but she just wasn't well enough. If she's below 80 and you can go for it then you might be able to get her weight up quickly. Also remember her brain will have shrunk and she'll be cognitively impaired. She may be entitled to extra time. I have some good recipes I've posted for massively calorific food you'll find on here. We had the Lidl melt in the middle caramel pudding tonight. Omg so delicious. Small, but 407 Cals and double cream on top so probably 500 Cals in total. I've got Bircher muesli in the fridge tonight which is a great breakfast with added ground almonds , cream, chia seeds, ground Linseed. Home baking is the way forward too. Apparently those who eat cake recover more quickly!!!

@DarkBlueEyes No not yet, she’s terrified of going into a ‘proper’ unit though.
She’s eaten next to nothing today, cried on and off most of the day. She can’t see that the less she eats, the worse she is mentally. She can’t cope with the guilt of eating. I might have to take her back to A&E before our Friday appt at this rate.

Forgot to name change back for this thread so I posted under my other name HelplessAndLost up thread by mistake!

It's so hard at the beginning. I hope they get a good plan quickly.

DD1 is ticking along. I must weigh her, really. We have a psychiatrist and LD nurse appointment on 23rd November. She had an Educational Psychology assessment today. Verbal feedback from her pastoral lead is that her cognitive ability is far higher than her processing speed and working memory, so she's basically forgetting things almost as soon as she's heard them.

I phoned the GP about DD3. She recommended a local counselling service. They replied that they can't see anyone with ED or emerging ED, so contact CAMHS EDT. CAMHS EDT said to do a general CAMHS referral. I hate those, so I've put it off for now. Last time I did one, for DD2, they rejected the referral because I hadn't done the Barnardo's Cygnet Course

@DarkBlueEyes sounds delicious, I will have a look! Problem is that she’s vegan but I’m hoping they will tell her that she needs to eat dairy for high fat intake- she said she would if they insisted on it but hasn’t yet.

Ginger you need to insist on her not being vegan, you can't rely on CAMHs to make those decisions- you have to be the one in control. She eats what you give her. Betty was in a similar situation with her dd I think. She needs butter, double cream, high fat and high calorie. I think when you start to start prodding the ED your dd may start to push back a bit (not a bad thing.)

If you can get her up to 2500-3000 calories a day she should gain 0.5-1kg a week. I never quite managed that with my dd but my dd seems to have bursts of weight gain and then long periods of maintaining.

I think your dd is around 70% wfh? She almost certainly will be pulled out of school and she should be on complete bed/sofa rest.

I agree with blind weighing from the start. I wish we'd done this, dds blind weighed now but the damage caused by knowing her weight early on was awful and long lasting.

Hi @gingerscientist my daughter was 78% wfh when first assessed by camhs and as the others have said school was off until she reached 85%wfh and even then it was part time until 90%.
She has her mocks too so between us we compromised and said she could return at 82%, mornings only on the strict condition that she continues to gain. As I understand it anything under 78% is complete bed rest, apart from trips to the bathroom. My dd wasn’t well enough for school when she was below 80%.

Yes my dd is vegetarian and one of the earliest concerns was her wanting to become vegan. I said no, she wasn’t well enough to make sensible decisions about what she eats and until she’s better I have to make those choices for her. She’s recently started to eat a couple of eggs on toast with avocado and I can see the changes in her already. I fortify her foods when ever I can, and it’s since I started doing that that we’ve seen any substantial weight gain.

My dds biggest fear is fat in foods so it has been challenging but so essential. It also helped me to remember that weight gain can be slow, it can stall a little but their bodies have to heal from within and so initially all their calorie intake goes on that. Don’t be disheartened though, take each day, one meal at a time. Camhs have given her a fat fact sheet which explains why they’re so very needed in our diet.

I would also say make sure she starts taking a multi vitamin (a~z) with minerals and I also give my daughter omega 3,6 and 9 supplements each day. Avocado, chia seeds, almonds, desiccated coconut, hummus have all been really helpful.

The FB group is super helpful and so is here. I hope we can all help you feel confident about refeeding and tackling the AN head on. I think once you have that confidence you will feel more in control and less overwhelmed. I found my resilience also built up over time and I was less scared of “the beast”.

Also remember when they’re not in school, getting back to school often becomes a huge motivator to eat. It certainly has for my dd. xx

Dark it's so positive to read what you are putting- even though I don't know you irl I was really concerned for you a few weeks ago.
Newbies it's so horrible but at least this thread is so supportive.
DD has an assessment today for cbt- we've waited such a long time for the nhs to provide anything like this. She's still got major issues with certain foods so I'm really hoping that they can address this.

Morning all,
dark so good to see your posts, you're a transformed woman and so very inspirational.

nctdn how are you/your Dd feeling about uni applications? Is it proving to be a motivational driver for her? Hope cbt assessment goes well

ginger I hope Fridays assessment goes well for you all

lougle am not surprised you're put off from doing the referral - you have considerable experience of supporting DC with additional needs so to jump through an unnecessary hoop (in my view) seems daft

We're doing ok. Dd is keeping to her supervised meal plan - sending us videos from work etc. She tries to negotiate swaps occasionally - so a biscuit for a packet of crisps so my brain is back in "quick maths" mode. I've said before but if the numbers round in Countdown was based on calorie and carb meal planning calculations I'd be awesome!!
Dd went out with friends for food last night and called me earlier than I thought to pick her up. My heart dropped but actually was really proud of her. They were at one of those food villages places with lots of different stands. One friend was late and a bit moody and said she wasn't going to eat. Dd recognised this would be a massive trigger too her ED so rang me to come home to eat. Obviously end goal is to find a way for her to find a way to stay out and eat but v proud of her for taking herself out of a tricky situation.

@myrtleWilson I am absolutely transformed, you're right on that count, but inspirational? Definitely not!

I was just having a look at my calendar. I was pretty suicidal in late August, I couldn't see the point of carrying on as I couldn't get her to eat and my other DD really doesn't like me (which was confirmed by a social worker as she told such lies about me it took my breath away). I cried every day and the last thought I had at night was that I didn't want to wake up in the morning.

DD was admitted on 23rd September and was in hospital for 2 weeks and 4 days, which gave me time to regroup, and by that time the sertraline had properly kicked in. During the first week of her admission I was very tearful but by the end I had turned a corner.

Now I feel like I've got some of me back again. I will go off the sertraline eventually, but not yet. DD's psych said 6 months after you feel better, start to tail it off so I will look at that in May next year. Part of me feeling better is linked to DD's progress that's for sure, I imagine I'd be in a different place now if it weren't for that.

She's in no way there (hid half of her snack from the nurse today and when called out on it couldn't/wouldn't explain herself) but there are glimpses of the real her and she looks so much better. I weighed her at home yesterday as we are still isolating and she's 90.03% WFH! 1.1kg on this week! So she can start to walk home from school as of next Monday which she is desperate to do.

Next goal isto play some sport. ED is pushing back hard but I am not going to let things relapse.

However, I am eating ALL THE FOOD! I lost lots of weight and now cannot stop stuffing myself! It's hilarious really but there you go. I am so hungry and so THIRSTY all the time (anyone know why that is? Even if I haven't had a drink the night before, just recently I've had 5 cups of tea by lunchtime!). Surely I can't be diabetic?

Dark have you had any bloods done? I wonder if it could be a side effect of the sertraline? You are an inspiration, you have fought so hard for your dd but also for yourself. Mind you I keep eating all the food as well 😶 I find it very hard to resist eating all the high calorie snack stuff I buy for dd especially when stressed and tired (ie 99.9% of the time!!)

Dd is absolutely full of cold and looks knackered, it's been mocks week for her this week. I might keep her off tomorrow to regroup a bit. She said the maths mock was shockingly hard and everyone came out in tears 😕

School are running a London trip in a couple of weeks which she's keen to go on. It will be a very long day (coach leaves at 6am and returns at 10pm!) I've said she can go on the promise she eats and responds to hunger cues...

Quick question: does anyone's DC get extra time in exams due to the ED? Just wondering if this was a thing. DD has asked about it.

@DarkBlueEyes i would be interested to know this too- my DD has mocks in a couple of weeks (if shes still in school). Has anyone been allowed to do mocks from home or just come in to do the exams, then go home again? I will ask the school this but need to wait til the assessment on friday to see what they tell us first.

@DarkBlueEyes sertraline can increase appetite which might explain why you are hungry. It can also cause a dry mouth for some people too.

Re the extra time - yes, I got extra time in my exams but that was also due to OCD. I also know some people applied for rest breaks when they were underweight - you just need the support of your doctor / psychiatrist etc and the SEN co-ordinator at your school who will write to the exam board and explain the need for the additional measures. They are there to ensure it is a level playing field for all.

My DD's HOY mentioned extra time in exams in a meeting we had with her..

Hello, I'm not sure I'm in the right place but was hoping you all might be able to offer some advice? (Waves to girlie)

Dd (11, started secondary school in September) has very suddenly stopped eating. Literally since Saturday, which is why I wonder if I'm in the wrong place as it's only been a few days and I'm aware you've all been battling this for years. I'm going to give a quick day by day account if that's ok?

Friday: home from school as normal, no issues, seemed happy, ate the muffin I got from Costa and loads of pizza for dinner.

Saturday: no breakfast, not unusual at the weekend, said she didn't feel great but recently had a cold, lunch a whole bowl of noodles and a bag of mini cookies, dinner ate nothing as said she felt sick again.

Sunday: no breakfast, felt sick, lunch ate 5 mini sausage rolls and two cheddars, dinner ate one slice of bread and butter and two pigs in blankets.

Monday: no breakfast, felt sick, cried that she didn’t want to go to school, lunch ate two mini sausage rolls and a frube, at home I tried talking to her as she’d just seemed so down since Saturday. I said I’d make her anything she wanted for dinner, mentioned something about not wanting anything with sugar in but wouldn’t elaborate. Ate one bite of veggie sausage and all her broccoli. She’s now refusing to drink anything but water. She wouldn’t tell me what was wrong but agreed to talk to my friend who she told she had been weighing herself often and didn’t like how her body was changing, feels she’s fat. My friend had brought a cream cake round and dd ate that.

Tuesday: refused brekdast again no drink tried offering tea or milk. Pastoral lead spoke to her and has referred to school counsellor. Lunch again two mini sausage rolls and a frube. Dinner agreed to 1/4 of 1/4 of a slice of pizza with salad. We sat watching a film and she seemed happy, ate it all including her brothers crusts then had a hobnob but swiftly retreated to her bedroom (not bathroom).

Wednesday: no breakfast, lunch two sausage rolls and a frube, when home complained that she bought a fizzy flavoured water at school that said sugar free but when she looked it wasn’t. I lost it a bit before dinner and said she needs to stop this now before it takes hold of her. That we wouldn’t go to London in a few weeks and I would cancel our trip to Edinburgh at Christmas as it’ll be rubbish if she’s miserable and refusing to eat. Said how she needs food to function etc. Dinner came and she ate 1/2 a slice of gammon and all of her veg.

Now it’s Thursday, she’s woken up in the same mood, headphones on, not eating. I’ve checked her phone but can’t find anything (I can’t even find any browsing history?). She doesn’t have TikTok but I know it can be accessed on the browser so I’ve blocked that. YouTube is all one direction videos. We've also removed the bathroom scales.

If anyone has any advice on how to approach this I’d be so grateful. I’ve read the whole thread and wish she could see the direction in which she could be heading.

She just came to me and said sorry and had a cry. She just doesn't want to eat anything because it's all unhealthy I 100% take the blame for all of this because a) I eat low carb for medical reasons and b) I do a lot of work with overweight children so diet (as in what we eat, not weight watchers ) is something that is often discussed at home.