Teen Eating Disorders - Thread 6

[myrtleWilson]

Hello everyone, and welcome to anyone looking at these threads for the first time..

Here is a link to thread 5 www.mumsnet.com/Talk/eating_disorders/4360801-Teen-Eating-Disorders-Thread-5

We've seen such an increase in young people facing eating disorders and these threads are testament to that.

With that in mind, we thought we'd try to include at the start of each thread 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

Hi,

I haven’t read the full threads (so much to read) but I really feel for you all.
My daughter, aged 15, started restricting food at the end of 2021. I initially thought she was being ‘healthier’ but she has gradually cut out most foods and vomits if she eats anything significant. She currently eats fruit in the morning - eg watermelon and a few strawberries and then eats and drinks nothing until the evening when she will eat salad and a wrap. That’s it. She’s really controlling about preparing her own food, cooks cakes etc only to throw them away, talks about food and drinks Diet Coke to ‘fill up’.
Shes been seen by the GP twice (bloods ok 4 weeks ago) and has been referred to CAMHS but I have no idea how long it will take to access help.
Im a lone parent (widowed 4 years ago) and I’m struggling. The GP told me to back right off around food which I’ve done but she’s eating so little that this can’t be sustained. She spends most of her time in bed under the duvet (even in this heat) but is still attending school.
Any advice/ solidarity would be greatly appreciated.
Thanks for reading.

Hi @Louloubelles and welcome but sorry you have had to find us.we have all been here and it's terrifying.
Your DD sounds v unwell and is clearly in the grip of an ED. All her behaviours point to that, as well as her severe cal restriction
It's great that you have sought help and have a referral but I am afraid your GPs advise is terrible. You are not 'backing off' from your DD's eating but allowing an ED free reign to entirely dictate her diet to a dangerous level.
Initially we thought backing off was the best option but it is exactly the wrong thing to do.
Your DD is eating too little, precariously so, and I would take her to A and E now/ tomorrow. She needs blood pressure and heart rate checks (sitting and standing) and an ECG. Blood tests being 'ok' can mask issues. Look up the MARSIPAN guidelines for teens and take it with you.
She cannot wait for a referral.
Please take her out-of-school and once given the go ahead by hospital (she could be at risk of refeeding syndrome) start FBT (family based therapy). This is what CAHMS will have you do anyway so you may as well start.
The EDSUK face book page and BEAT website have good resources to help. But essentially you start ensuring she eats 3 meals and 3 snacks a day.
Which sounds easy but isn't.
Your DD is at the mercy of a terrorist in her head and she needs you to advocate for her. Please get her seen urgently.

@Louloubelles I second that. When I was waiting for a referral from an Ed specialist, the community dietitian said not to force food and not so worry. In that time her weight dropped dramatically. I wish I'd acted sooner.

@Louloubelles Please take @Lottsbiffandsmudge advice, as shocking as it sounds this is the reality - GP’s missed my daughters illness for nearly a year, we trusted them - they did all the usual tests - on balance GP’s know little about Eating Disorders, I wish I had found this thread then we wasted so much valuable time, DD was hospitalised and her recovery is a slow road. And we are not being alarmist but be your daughters best advocate - her illness will despise you for it but deep down your DD wants you to take charge and push the Eating Disorder to one side to save her. The resistance and bile is the illness, when you are getting that kick back you are challenging the anorexia, then you are doing a good job although at the time it doesn’t feel like it, but it means what you are doing is working - as an analogy you are fighting an abusive partner your DD is under the spell of, at that point she trusts him but in the long term when you have broken their relationship your DD will see what a destructive arrangement it was. This sounds dramatic but is how I rationalise DD’s illness.

Hi @Louloubelles - I agree with @Lottsbiffandsmudge - go to A&E tomorrow armed with the Marsipan list (if its not in the first post of this thread it will be in the first post of thread 5) you'll have to be her advocate and don't be afraid to be pointy elbowed about it. You'll have lots of support here.

@NanFlanders If I had a magic wand etc etc. However, your DD's trajectory seems similar to mine. She was bouncing in and out of admissions for refeeding , and then CAMHS gave us permission to do re-feeding at home rather than in hospital. Would that work for you or not? For us, we had reached the point that a hospital admission would spiral her downwards whereas re-feeding at home was at least in a safe place. CAMHS put in place loads of support and we used the crisis line A LOT - we had bloods done every 24 hours. It was hard but after her last admission we did re-feeding at home for about 6 months and then she decided to recover. I think the 'safe place' and family focus helped her decide to recover as the impact on us all was more evident to her than when we in a hospital setting. Her first attempt at recovery was for us, it didn't succeed - but it laid the groundwork for her second attempt which was for her. But you do need a CAMHS team to be all over it I think to help make it work.

Hi Loulou your situation sounds very familiar and most of us on this thread have gone through exactly where you are now.

All lots advice is spot on, your dd sounds completely in the grips of anorexia. You need to be fast tracked to the ED service Camhs (general Camhs will be of no use) in some areas you can self refer.

If you can join the fb group as they are a good source of information and support, there's an a&e file which gives clear instructions on what to ask for when you take your dd. The fb group is EDSUK

She needs to be put on a refeeding plan of 3 meals and 3 snacks a day, all high calorie.

Do you know her weight? Has she lost a lot of weight?

@bringmethehumous it sounds that you have a co-ordinated plan involving your family and it is working well - I hope it continues, this stage of refeeding is usually the hardest as your child (the ED) suffers the distress of being bullied to eat by those who care for her.

@NanFlanders been thinking of the outcome of your DDs ED team meeting today - hoping it provides some assurance to progress.

@Girliefriendlikespuppies hope your holiday avoids the problems caused by the fires in Portugal - after waiting so long for a holiday you couldn’t make this up.

Hi. Thanks @D1ANA22 . We have a plan now that DD has home leave from 11 till 6 every day between now and Monday. If she doesn't eat or drink the Fortisip equivalent, she get 1.5x the Fortisip equivalent down the NG tube on return to hospital. Then discharge on Monday, but straight back in, if she doesn't gain 500g in a week or if her heart rate dips below 50.

So are the hospital happy if it's all meal replacement rather than actual food?

@NCTDN Yes. As long as the nutrition is going in. I doubt she'll drink the Fortisip to be honest - she will either eat, as it's usually fewer calories than Fortisip, or the tube as then 'its not her fault'.

That sounds like a sensible plan Nan, good luck in getting your dd to comply.

We're in Portugal!! We saw some fires as we flew in to Faro but where we're staying seems okay. It's hot but not stupidly hot so far!

Dd had quite a good day Ystd food wise (better than me as I hate flying so was too anxious to eat properly!) however today has been trickier to navigate. Breakfast is included but dds choice at the buffet this morning was toast with a tiny scraping of butter and some fruit 🙄 she did then eat at Portuguese tart as I moaned. Lunch was a cheese toastie and a calipo lolly and she's refused anything else until dinner as she's 'not hungry' 😒

It's nowhere near as much as she'd normally have at home.

From tomorrow I'll be deciding what's for breakfast and getting stricter during the day.

It's just so frustrating that we can't have a relaxing holiday without the EDs constant presence.

@NanFlanders DD hated drinking the fortisip too - reminded her of hospital and by nature they hate liquid calories. It forced her to eat as the threat of fortisip was there (bottles always kept in the fridge). I hope you can cross that hurdle, like all things with this illness it is tough.

Hospital instigated home visits for DD, we live some distance from the hospital so the time at home was quite short (and didn’t cover meals, just snacks at home). DD wanted desperately to leave hospital so that was her motivation.

Hope things improve.

@Girliefriendlikespuppies my DD’s anxiety through this illness is so high flying is off the cards, despite her travelling long and short haul for years before lock down.

I imagine with the heat then appetites shrink naturally, and by the very nature of holidays your daughter won’t be as active and hopefully relaxing and not burning much energy. Eating out constantly must be good exposure work for your DD. We rarely eat out, we did yesterday and after the meal DD had a meltdown, wanting to be taken straight back home. On reflection after her evening meal at home she always goes to her room immediately, being out meant she couldn’t do this - another eating disorder rule we will have to break.

Hi, I posted on 13/7 about my 15 yo daughter and got some great advice from you. Thanks. I ended up getting a number for the duty clinician at the ED clinic nearest me and spoke to her about A&E and if we should go. She advised I should get her checked so we went. All checks were ok apart from blood sugar being low. In the end they asked her to eat a sandwich and drink some juice which she did and we were able to go home. I’m hoping that the experience of spending 6 hours in hospital with screaming babies and talk from the doctor will help her think.

I spoke again to the same clinician yesterday and she said that she has put my daughter on the waiting list for referral despite not having received the CAHMS form from GP. She kindly put her as a ‘red’ priority referral but said there are a lot of reds at the moment as they are getting an influx of ED sufferers. She also said she would speak to my daughter while we await face to face services.

I’ve been supervising meals and keeping my daughter out of the kitchen as much as possible and trying to monitor her bathroom use to make sure she doesn’t vomit. All exhausting and tricky on my own but I’ll do my best. It will be easier to do over the summer when kids are off school and I’m off work. I’m going to see ABBA show today with friends so I’m looking forward to that but also anxious that I can’t keep an eye on her.

I’ve also started reading Éva Musby’s book which is very helpful.

Thanks for reading and wishing you all a peaceful weekend.

@Louloubelles that all sounds very positive and you have an insight into the eating disorder already - I was so naïve at the start, CAMH gave me a photocopy of a meal plan and sent us home, it is no wonder DD ended up in hospital.

I found the Eva Musby book is useful for advice and support - there are a few too many chapters devoted to the ‘bungee jump’ analogy where one chapter would be enough, but for different stages of recovery (ie returning to school - going on holiday etc) the book gives helpful pointers. I must admit to not referring to the book as often since finding this thread which is a lifeline.

Have a good weekend everyone.

Thanks so much for the update @Louloubelles and it's great to hear how much progress you have made... well done you!
Has your DD kicked back much yet? It would be expected. My DD never purged but I have read that motoring for at least an hour after meals is required.
Watch out for different compensatory activity (exercise, making herself cold (tough at moment!) etc...
Hope you are seen soon. When is the clinician going to speak to your DD?

On a different note DD had her ittom teeth brace fitted on Weds. She had no issues with her top brace. We have come away on hols (UK) and she has a very sore inside bottom lip from rubbing. Which is impacting on her eating.
This is sending me into a complete tizz. I keep getting flash backs to last year in the caravan with a child I had to bully to eat. She isn't eating enough but still v active. Walking swimming etc
Ordered wax (to cover the offending bit) on line which arrives tomorrow I hope. Its also her 15th birthday.
She still makes the 'wrong ' choices whe our.... we all had ice cream earlier and she wanted a tea cake which she smeared the tiniest amount of butter on. Even tho ice cream would be easier on her mouth.
Even after a year of recovery these behaviours are so hard to move on from....

Yep lots that's kind of where we are as well, dd will still try her luck with choosing something she thinks is vaguely healthier just to save a few calories.

Today she's been really up and down, managed to get quite a bit of food into her but she's been miserable. Talking about saving up to get a nose job (there's nothing wrong with her nose!!) and comparing herself unfavourably with everyone else.

Then at other times she's been laughing and loving life in the swimming pool.

Hello all, I am really hoping someone can offer me some advice please.

We are relatively new to this situation - our 13 year old daughter has been restricting food and has lost a lot of weight. I'm not sure how much as we have no scales in the house but she is very thin. I thought she was just becoming a fussy eater so we estimate that she's been gradually restricting her diet for about 2-3 months. She finally admitted it to us a week ago and it has been hell since. she is despondent and depressed and actually seems worse since it became out in the open.

We have an appt with the GP booked and was advised to self refer to CAMHS which I have done. She is not eating much but I am managing to get 3 small/moderate meals a day into her + smoothies and I'm planning to start with milky supplement drinks in between meal next week.

One thing that I don't understand is in all the reading I've been doing people are talking about their child eating 3000K calories per day. How is this possible? How are you doing this? I don't know how much 3000K looks like but it sounds like an absolutely massive amount of food.

Welcome @BloodyHellKen You've made all the right decisions so far and you're getting some food into her so mega congratulations - seriously, don't underestimate how much of a good job you're doing.

What you need to do now is make sure you're harmed to the hilt for the GP appointment - in the first post of this thread is a heap of resources - including the MARSIPAN junior scale. This is what clinicians should be using to assess the eating disorder. Use it in your discussions - ask how your DD rates on Marsipan Junior, ask what her postural drop is etc. Don't be fobbed off by a GP saying they'll weigh and review.

Do you know your DD's weight and how many calories (roughly) she's eating?

Be prepared if your DD has had a significant starvation experience to argue for admission to hospital for re-feeding. Re-feeding syndrome is when the body's systems are compromised due to starvation experience and the body needs to be supported to increase calories gently but regularly to avoid organs going haywire and sadly occasionally failing.

Don't focus too much on the 3000 calories yet - there are lots of different approaches and much will depend on your daughter's character and the nature of her food intake now. Some people are able to load up on calories with the implicit/tacit agreement of their child, others will manage to work around any fear foods and try to reintroduce these safely.

The general recovery approach is "FBT - family based therapy" which entails you as a parent taking control of meals and eating - which you're already doing. Where it differs is that each family will find their own version of "FBT"

My main advice to you though is be the squeaky wheel - ED services are stretched but they won't be any less stretched by you advocating strongly for your DD.

Do use the thread -no stupid question, no shame for when things go badly off track, lots of support and huge cheers for every success - whatever that looks like for us individually

(that meant to say - there is no stupid questions rather than how it looks as telling you not to ask stupid questions - SORRY!)

Thank you @myrtleWilson . That is all very, very helpful.

I am exhausted. I've spent over an hour this evening persuading her to eat but we went from tears, 'I'm not eating that, why have you given me so much?' (it was a very modest portion) to 99% of it being eaten - Salmon and potatoes fried in butter with chopped tomato/basil drizzled in a little oil and a large glass of fruit smoothie. I'm not sure how many calories that was as I have zero experience of counting calories but it must be quite a few I hope.

Strangely enough she seems in a better place after eating it, if only for the time being :)

I'm off to look up MARSIPAN, thank you x

@BloodyHellKen Sorry you find yourself here, butbas @myrtleWilson says, you are doing all the right things. If it helps, you can DM me with your email address, and I'll send you my Dad's NHS meal plan.

Welcome bloodyhellken ir sounds like you're on the right tracks already. Quite often when parents initially take control the child is relieved and will offer very little resistance to eating.

Unfortunately that doesn't tend to last and there is some push back.

3000 calories sounds a lot but once you get to grips with it isn't that hard to do. You can add butter and double cream to pretty much everything. Plus doing 3 meals and 3 snacks a day you can break it down into manageable chunks.

I aimed for 600 calories for breakfast, 700 for lunch and 1500 for dinner including a pudding. Then snacks are around 200 cals each. The only way I could do this was adding double cream and butter to everything.

If your dd likes smoothies or milkshakes you can easily make one drink that equals 800 calories plus.

Does your dd exercise? If so that needs to stop.

@BloodyHellKen sorry you're facing this. I drop off this thread and then pop up again. DD1 was 37.5kg in January last year and I also couldn't imagine even 2000 calories. She is a bit atypical as she has SEN so couldn't appreciate calories and rather classified food as good or bad. Fortunately, chocolate and pancakes were 'good' foods. We got a long way by switching out ingredients in classic recipes. For example, duck eggs have double the calories of hens eggs, but it's still "2 eggs". Double cream has masses of calories but doesn't change the appearance of smoothies, mashed potato, etc. Nuts pack a lot of calories but they're small.

At this stage, any food is healthy. Ignore 'balanced diet'. Always choose the highest calories you can get away with. You are saving your Dd's life - balance can come later.

DD1 is on the side again, I think. She had a D&V bug in April, and lost 3kg. Then a Covid like bug (quite possibly Covid - tested negative but her whole school went down to the extent that they had to close year groups). It knocked her appetite, her mood dipped, she's been refusing sweet treats, resisting breakfast, not massively accepting of lunch and trying to leave half of dinner. She just wants to sleep all day. Dark circles under her eyes. She was 56.7kg in April, lost 3kg in May, maintained in June (couldn't get her appetite up) and now she's lost another 1.2kg, taking her fractionally below her target weight for the first time since October '21, when they had to restart Olanzapine. I do hope we don't have to start it again. Such a pain dissolving it and drawing up syringes. But her thoughts about food being poison are back, so it may be necessary.