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?

Welcome kit do you want to tell us a bit more about your situation? Is your Ds restricting what he eats?

@Bettybarkalot123 sh*t that's a long time to wait!! It's not the fault Camhs but rather funding but this is our children who need help. The funding should be there given all the hype about how our kids have suffered from lockdown. Makes me so angry!!

Hi @Kitfish you’ve come to the right place for amazing help, advice and support.

@vagor I know it’s rubbish, lockdowns have massively impacted on our young ones. We’ve had support from the community ED team at camhs but we did have to wait for the appointment with the doctor. She’s doing really well, but her anxiety is high. She’s eating regularly but not really tackling those tricky fear foods, I’m hoping meds will give her the confidence to do this.

@Bettybarkalot123 hopefully the medication will help to take the edge off the anxiety for her and then she might be able to tackle those fear foods 🤔🙂

hello @Kitfish and welcome... There have been a couple of posters who have some experience of ARFID but they were on earlier threads. I think @Lougle has some insight too

@Bettybarkalot123 another floux household here - we've recently upped the dose and for us it is working..

DD had her first meeting with Adults today - they're going to be seeing her weekly for at least 12 months. I'm a bit surprised as to be honest I thought they wouldn't be able to devote that much resource to her (I am very grateful though)

We've also had a good family chat tonight about how still using the CAMHS meal plan framework is reinforcing eating disorder culture in the house which means DD feels she is always reminded of being ill when at home compared to at work. Obviously we can't ditch 'the plan' entirely but we're going to try to move to less of a "care-giver" relationship about food and more 'normal parent of late teenager'. As the seesaw moves to lessen her anxiety, ours will increase but hopefully it will balance out in the coming months. In the spirit of 'free-er eating' DD had a ham & cheese toastie from Starbucks today which she's been craving, then she was hit by extreme hunger pains - but she coped well.
@Bluebuddha10 I know your DD is still in tricky waters but did you go through anything similar about the meal plan?

We talked a little about her recovery attempt in summer and this one and I do wonder whether actually her getting a job where people don't associate her as having an ED may have been the mental tipping point?

I don't want to jinx it but I have that glimmer of hope again... (but lets keep it to ourselves for now?)

Thanks @myrtleWilson. I thought I remembered there were a couple on here. The other good thing that came from the appointment was that now she’s on medication the doctor said she’ll have regular appointments with her. She was so lovely and seemed to just click with DD. She didn’t talk down to her. Dd loves science and wants to be a vet and the doctor kept saying “you’re a scientist xx, you understand that …” it really seemed to click with her. She just had such an amazing way of explaining things. I think some of it may have clicked. Fingers crossed 🤞🏻

Hi. Thanks for responding - it's great to be heard. Yes, son restricts what he eats substantially. Won't eat breakfast, won't eat at school at all (age 14 so no-one there to supervise), when he does eat it will only be if its one of about 4 meals he will agree to. Won't eat fruit, barely eats vegs (a couple of mouthfuls every couple of weeks), is painfully underwight and has stunted his growth from lack of eating (looks about 11 years old, even though he is 14). Refuses a meal if there is something "wrong" in preparation - e.g. wrongs two items touching, not on separate plates etc. When he does eat, will only eat a few mouthfuls (usually) then says he is not hungry. I feel like my life is spent trying to think of foods he will eat and then preparing them in a way he will ike. I feel like it's a small victory everytime he actually eats a meal. I don't know what to do to help him.

Kit are you getting any professional help? Has he seen a dietitian or anyone from an ED team? When was the last time a Dr checked on him?

If he is restricting to less than 500 cals a day he should be on bedrest/taken to a&e.

Is he neurotypical? My understanding is AFRID is more common in ASC kids.

Betty if your dd responds well to the science she might like Tabitha Farrah, I've not read it but the neural rewiring for eating disorders book might be a good one for her to read. Good luck with the antidepressants, I personally didn't get on well with fluoxetine but I think I'm very much in the minority as most people seem to find it helps a lot.

Hi all. Just popped in to give a yay from me. Well, a qualified one I suppose.

DD mental state is still not brilliant. Still hiding food, crumbing, commenting how she looks bigger and she likes the way she looked when she was in hospital, not eating ANYTHING outside her meal plan, scared of bananas (WTF?), cake, peanut butter etc etc. Massively long list of fear foods. So state not great.

Weight however, she put on 1.7kg this week! OMFG! She's now 94.64 WFH. When I first came on this group in September I never would have believed it. I'd never have believed it if you told me I wouldn't want to not wake up each morning either....

So. We still have a long way to go BUT she is looking so much better. Weirdly I'd be happy for her not to put any more weight on now as she looks normal again, but her mental state is not right so we must keep going.

How is everyone else?

Brilliant weight gain dark, I've thought all the way through from 94% to 100% wfh that dd looks about right weight wise! The weight just sort of distributes itself so she looks in proportion plus she's grown a couple of cms as well. I've just made the worlds most calorific fishpie for dinner, fish, white sauce (with butter, cream and soft cheese) topped with mash potatoes with added butter, cream and cheese 😋 so I'm definitely not letting up yet!

We're doing okay I think, hoping for a better Christmas than last year which had me in tears for most of it and dd trying to hide food in her knickers!!

Hi again all. Not posted since my DD (15.5) was admitted 9 days ago. It's been a total blur, a few ups but loads of downs. For those of you whose DC have been in hosp I wonder if you can help/tell me what to expect. She's on a 3 week re-feeding plan (3+3) at Bristol Children's hospital. She ate a few actual meals in the first few days when the portions were small but of course by day 5 - and ever since - the portions are huge (E.g. 2.5 weetabix plus toast & jam and juice for breakfast) so we had a few days where she didn't eat any real food at all, just the supplement drinks. She tended to drink the 'snack' size drinks as they were only 200mls but had to have NG tube for the 'meal' size drink as they are 400ml and obvs v thick, sweet and gloopy. Not ideal. Since meeting with CAMHS on Tuesday she has managed some of the 'snacks' - toast/biscuits with fruit, but still no main meals. I can't see that she'll ever manage a main meal when it's so big and followed by a big pudding too. I know the portion size is non-negotiable, and understand food is medicine, brain starvation etc. what worries me is a) the fact that therapy can't start till she's 're-fed'(so effectively she facing her demons alone) b) they say she won't be discharged home at the end of week 3 unless she's eating. But there isn't an ED unit near us so she'd be hundreds of miles away. We have about 10 days to try and turn this around. Meanwhile she's admitted she does not want to get 'better' and will go back to trying to lose weight when she can. I absolutely do not want her depressed and miserable hundreds of miles away from home, but (almost) equally do not want her home with the kind of behaviours you guys talk about, and having to deal with that and fight against it on my own. She's yr11 so totally does not want to miss more time off school....but she's definitely in the grip of this. Her wfh isn't too bad but mental state is! Does anyone know what's likely to happen re discharge (12 days' time) if she's eating snacks & drinking supplements but still not the big meals? Or when the therapy might start...is that to do with wfh or amount she's 'eating'?

Oops forgot about paragraphs!

@NCnora I can't really help. DD was totally compliant during her 10 day stay. She started with half portions then increased to three quarters. By day 4 she was on full sized portions but to be fair I don't think they were huge. Breakfast was cereal plus 250ml milk which was enough for her as that's the trickiest meal for dd. She had three big snacks in addition to three meals.

Won't they just keep her in if not ready for home? I guess they'll have lots of experience being a children's hospital?

@NCnora
Sorry you are going through this. My daughter has had numerous hospital admissions. Sometimes she would be compliant just so she could get discharged quicker and then she would revert back to her usual behaviours and lose any weight she may have gained in hospital.
Other times she would not be as compliant, sometimes would have to be tube fed .

Her stays were sometimes very long, but usually would be transferred to ED unit.
She has always come out of hospital stays and lost the weight she gained very quickly.
The therapy never really seemed to have much effect. Hope things improve, being in an ED unit so far from home would be tough. We were lucky in that her team and the ED unit (adolescents not adults) was very local.

CAMHS ED team said it's a 3 week programme offered by the l
children's hospital here to restore physical health, and after that she'd need an ED unit if she's not eating actual food, so that apparently means Kent, London or even further afield; depending on where there is a bed. We are in Bristol.

@myrtleWilson
my daughter still follows a meal plan from adolescent service, despite now being 20. She eats virtually the same every day, rarely veers from it, never ever eats out or buys take outs or sandwiches. Everything has to be weighed, measured and made at home. Shes a bit OCD with the meal plan but calorie intake is really low. She is pretty rigid , totally inflexible.

Ncnora my dd wasn't ever admitted so I'm not really qualified to comment but my understanding is there are very few ED inpatient beds in the country at the moment. I would push to keep her on the ward until she is eating 3 plus 3 routinely and not needing the NG.

If they talk about sending her home check what community services will be in place. Have they discussed trying any meds? It sounds like she might benefit from olanzipine or similar to quieten the ED thoughts.

In the mean time read everything you can about FBT, are you on the FB group?

@NCnora - my DD complied in order to be discharged on her first admission then rebounded into hospital again a couple of weeks later as we just didn't have the CAMHS support in place we needed. Following her second discharge, we started to have more intervention from CAMHS. She needed (medically) a further two admissions but we felt after each admission, her mental health declined so CAMHS agreed with us to put in place re-feeding at home. Her last re-feed at home was this time last year and we were warned that the next option was specialist unit.

We learnt we had to be very pointy elbowed and advocate loudly and repeatedly for additional support at home because otherwise we saw ourselves in an ever decreasing circle of admissions and drops in mental health. Eventually, we were having about 9 interventions a week from CAMHS including 1-1 therapy, family therapy, dietician support, meal support at home x 2/3 per week and 3x per week of intensive home support for DD around care plans, self harm etc.

I think compared to others on this thread we had more direct support - I think this was because DD at the time was close to turning 18 so CAMHS were very much "kitchen sink" time. So, my advice would be to keep shouting up - make a nuisance of yourself.

In DD news - her lanugo hair is definitely going! Her body is healing.

Hi everyone.
Can’t even remember what I said in my last update, it’s been a blur.
DD was admitted to hospital for a 2nd time last month at 31kg, she was there nearly a month and is now in a Tier 4 unit.
Still being tube fed though so she’s been tube fed for a whole month now, she won’t eat or drink a thing.
Although she is being given meds and vitamins so has to have a sip of water which she hates doing.
Can’t begin to think about how hard Christmas will be without her here.
Thinking of you all.

Oh @SnitchyBitch I'm so sorry. That must be incredibly hard for you. I can't help at all but these are for you x

@SnitchyBitch wow 31kg! That's so low. My DD is the same although it's her first admission she is refusing food and won't even take the ensure shakes through a straw. She's also relectant to drink and has to be prompted by the nurses as she won't listen to us. It's been 18 days so far in hospital with no signs of improvement 😩
She's not going to be home for Christmas so feel your pain Hun 😢😢😢
Feel useless! The hubby and I are doing shifts at the hospital and have been with her 24-7 even though she doesn't want us here we're here regardless. At 12 I'm not leaving her 🤦🏻‍♀️🤷🏻‍♀️
I hope things get better for you and your DD. This thread gives me hope that slowly things will get better. Just taking every day as it comes and trying to be strong and not cry 😢😢

Oh @vagor So shit isn’t it. I hope things improve for you too.
DD was allowed some home leave during her last week in hospital which was nice.
The consultant said she could be waiting months for a bed so he wanted to make the wait as good as he could facilitate without interfering with the tube feeding.
He’s been amazing, couldn’t have got as far as we have without him. Hope you have someone fab at your hospital helping you x

@vagorvag @SnitchyBitch am so sorry that you're having to cope with this, especially at Christmas and with all the covid shenanigans too...