Teen Eating Disorders Thread 7

[Lottsbiffandsmudge]

We have managed to fill the previous Thread here https://www.mumsnet.com/talk/eating_disorders/4471980-Teen-Eating-Disorders-Thread-6?page=40

So I thought I would start a new one.

Everyone supporting a young person with and ED is welcome here for advice (non professional but lived experience) and support.

Hoping everyone can find us...

SwattyPie This is a support thread, somewhere to get advice, offload, have a bloody good scream and shout if needs be. We get it. Big hugs to you.

@SwattyPie I feel like I'm doing the same and feel guilty too. But when you are in full on crisis mode I think that's normal and fine, and I hope what I'm going through will be helpful both in terms of others reading it now and for advice I'm able to give in the future.

We're into day 4 of food refusal now, she's now only eating/drinking orange juice, smoothies (shop bought which I'm decanting, adding oil and cream to, whizzing up and then putting back into the bottle 😖), graze nut packs and now the fortisip bottles from the GP.

She managed one bite of tomato and spinach sauce from her dinner last night and then freaked out saying she wanted it out of her and sobbing. But one bite better than not at all I guess.

The thing im having a hard time getting my head around is she WANTS to eat, she is saying stuff like it looks or smells good, then as we were sat there she started listing all the things she wants to eat (dominoes pizza, dough balls, ramen soup) but can't.

Anyone else had this? How to respond? It's heartbreaking as I'd drop everything and buy all of it, but she just can't allow herself to eat it. And she admitted every day she doesn't eat it becomes harder to take that step.

It's terrifying

@SwattyPie well done for last night, I hope you enjoyed your wine it sounds thoroughly deserved! being in despair after similar situations I once spoke to an ed nurse and she reassured me never underestimate the power of those standoffs as it sends a very clear message to the ED and often lots of progress it made in those standoffs.

@LittlePickleHead in my experience I treat it as a glimpse of old D coming through desperately seeking outside permission against her ED to eat those things so I serve them to here after hearing her say something like that, of course when it is in front of her it is a different story all together, but even if it takes hours and tears and re plating due to thrown food it does get eaten and I know she wanted it even if her ED did not

LittlePickleHead I posted much the same thing a few weeks ago. Many of our chats were about foods she missed and I (wrongly) took her supermarket shopping everytime she asked and bought everything she wanted. A dominos delivery was a disaster as she just couldn't eat and dh and I felt awful. I thought I was helping her by indulging her every whim, but after posting on here about it and getting some great insight, I realised I was giving her choices she couldn't cope with.

I switched to grocery shopping online and tried to stick to our weekly menu. No more going to the supermarket with her. We talked to her about how we could make her fear foods easier for her, such as roast potatoes cooked in the airfryer with just a spray of 1cal oil and mini yorkshire puds that weren't too daunting. Then I suggested gravy in a jug on the side so she could pour what she wanted. It was a bit of a gamble because obviously I was giving in to the ED worries about cals and fat, but she ate them and by just opening that door she'll now eat a roast dinner every Sunday. Now I do the roasties in goose fat, buy slightly bigger Yorkshire puds and get 40g of butter into her gravy - she's totally none the wiser. Pizza is still difficult but she'll have half a bagel with cheese and tomato grilled (with a load of olive oil glugged on under the cheese) so it's pizza-ish.

Keep going getting the fats in as much as you can. The graze packs are often oily anyway so you can maybe spray on some olive oil. I fill an empty fry light bottle with olive oil and spray it on everything I can.

I spoke to the school this morning and now I'm so confused as advice from all angles is so conflicting.

I got DD into school this morning after a glass of smoothie, trying toast and when uneaten giving a fortisip bottle.

I spoke to the school safeguarding lead today and she said that they can advocate for not going into school or provide any provision for home learning and that the other AN girls in the school all go in regardless, even if they haven't eaten, or the my just rely on meal replacement drinks.

Obviously this flies in the face of 'life stops' and is contra to my plan to bring her home at lunch if she doesn't eat. Do I offer her normal lunch and have a secret fortisip/packet of nuts as a backup? But surely she'll rely on this?

She's said herself the longer she doesn't eat normal food for the harder it is so what do I do?!

They can't advocate not going into school

The safeguarding lead sounds clueless about ED. Just because some ED sufferers manage school it doesn't mean all of them can. Your dd needs to be given a plan to support her as an individual with what she can manage right now in her recovery.

Tell them she will be part time for the time being. GP or camhs will back you up. Part time can be all day but less days a week, until break or until lunch or even just one lesson a day. Whatever your dd can manage. This will probably change day to day, week to week.

Any day she doesn't have enough calories for breakfast she shouldn't go to school. That's the mantra.

@LittlePickleHead what is her weight for height? We were told that under 80% was bed rest/wheelchair, 85% was part time school, 90% was full time school but no PE, 95% normal activity.

I don't know her WFH but last measurements are (DD13) 161cm, 46.5kg so she's not drastically underweight (yet!)

It's more how the fuck I get her to start eating proper food if she thinks she can fall back on the drinks. Every day she doesn't do it it gets harder and she's admitted this herself

I don't have a plan, I feel woefully unsupported here. Spoke to CAHMS crisis team right now and there is a referral to the Maudsley underway but this could be another 6 weeks and even then they might not accept her

The private psychiatrist so far has only prescribed her fluoxetine which hasn't yet kicked in and we still haven't managed to get a therapist referral in place (we have spoken to someone from the team who is arranging but nothing set up yet)

It honestly feels like she needs to deteriorate dramatically for anything to get done which is ridiculous. In the meantime I have conflicting advice from everyone I speak to and DD adamantly telling me she's not going to eat no matter what (and I'm still trying with every meal)

She's feeling weak and getting leg cramps

I was just sobbing this morning whilst she was at school as I just feel so terrified by all of this and I don't know what to do.

DD still seems convinced she can go to her friends birthday party on Saturday and babysit next week despite me saying she can't if she hasn't eaten properly. She just tells me to wait in case it's ok by then - at the same time and telling me nothing will change and she can't eat

If someone could do a wfh for me I'd appreciate it

So sorry LittlePickleHead. It shouldn't be so hard to get help. It's an absolutely terrifying and souk destroying place to be as a parent and something I wouldn't wish on my worst enemy.

To be honest though, even once you get camhs appointments they are only generally to check the childs obs and talk about how to get them to eat. I've had better advice and more success with the tips shared here. The dietitian was helpful but again, nothing I couldn't research or seek advice for myself.

Definitely say that party and babysitting can't happen unless she eats. Write down what you expect her to eat each day from now until the party. If she refuses she won't be going. Anything is worth a shot. We cancelled everything, including our holiday, until dd fully complied to her meal plan and she now knows all future plans depend on her eating well.

Littlepicklehead
I think her WFH is around 85.5%

The issue is not getting her to take even a bite

We've got first appointment on 1st Dec with the ED unit. How on earth can we wait that long

I'm sorry I'm panicking. I've had calls from CAMHS crisis team, a social worker, and the ED unit today so I know she's in the system now, but the fear of her never taking a bite of solid food again is overwhelming

The range of advice people get from CAMHS is mind blowing.

DD14 is currently 73% WFH but they've said she's OK to go to school. She's had one online and one in person appointment but - as far as I can gather - that will be it. They say that because she doesn't have body dysmorphia and is cooperating (more or less) with eating more that I can just weigh her at home and get in touch with them if she starts to lose again.

We've also been told that any talking therapy for anxiety / stress / OCD involves a 6+ month waiting list and "Did she feel like it would be helpful to be put on the waiting list and remember that nobody can force her to be on the waiting list if she doesn't want to". And of course she said, No thank you, I don't want therapy.

I completely get that there are much more serious cases (as this thread will testify) and that CAMHS need to prioritise them and focus on using the overstretched provision they have on the most severe cases.

But the selfish irrational mum in me feels like we have been fobbed off (I do know rationally that it's good she doesn't require urgent intervention!!)

@LittlePickleHead I am so sorry you are going through this. I am stressed beyond reason and my DD is trying to eat so I can't imagine what it's like for you

@LittlePickleHead my app says 92-95% depending on whether she's just 13 or almost 14.

However, WFH doesn't tell you everything you need to know. Her intent is just as important and if she's refusing to eat, she can be very ill very quickly.

@LittlePickleHead - it is completely understandable that you feel overwhelmed and consumed by fear. All of us on the thread know those feelings. Don't worry too much about using the fortisip - its doing its job right now - getting the calories etc into her. Just make sure you're offering food first, setting a time limit and then providing the fortisip.

It is quite usual for those with an eating disorder to be obsessed with watching food programmes, following food related tik toks etc. For some it may be the non ED voice coming through - for us it was the opposite, it was a way of 'consuming' food without actually eating it.

To anyone who feels like they're not giving back to the board - please don't apologise of beat yourself up. No-one is doing a running tally - I think on thread 1 I posted about how quickly you become an expert in your DC's ED (partly because the mechanism of care is you have to practically do it all). Think of the thread as a (sadly needed) relay - the baton of advice and support is constantly being passed on. Some runners only need to do 1 lap of the track as they get the right intervention and support and move into recover, others are still going round and round because for them recovery is not linear. We all pass the baton and receive it gratefully when we need it.

I just need a strategy now to stick to with an iron rod.

Has anyone and this total refusal for days and managed to break it?

@LittlePickleHead We had to lean on fortisip very heavily at times and also had to move to NG tube feeding during hospital admissions. Prior to hitting that wall, I would have imagined myself to be aghast at the thought - but actually we (including DD) were asking for tube feeding because it was just too hard for her to eat - she was so weak and tired that it was a case of ever decreasing circles. For the time needed the fortisip/tube feeding allowed her to rest and reduce some of the stress. My dd lost a lot of weight in a v short time caused by near starvation.

I hope that doesn't add to your stress or give you a new worry, I shared it because when it reached those points, I saw the fortisip or tube feeding as something that was helpful rather than it being all consumingly scary. Eventually, after a few days she did revert to food - it does happen.

Sorry! Am spamming the thread - but to give you some hope @LittlePickleHead -

DD was incredibly weak - she'd fall over multiple times a day, she was always freezing cold, she never passed a postural drop observation ever. That was summer of 2020.

Now in 2022, she can squat lift 78kg and is planning to run a marathon next year!! The ED voice is still there - but very much diminished.

I have certainly had those days of panic where you think they will never eat again, my dd occasionally withdraws, one time not eating or drinking for 24 hours and I called the emergency CAHMS line and they said it's up to you to do what you think is right?! Obviously I didn't know which was why I was calling.

you know your dd best, in my case, I've realised that with my dd, sometimes a strategic retreat is best so we can advance, but we were not on a meal plan at the time, she wouldn't accept any such thing, although we are now and she's actually doing quite well on it. Things change, and times change. I don't believe we've cracked it at all, but knowing that things can be different, and someone who adamantly refused or would even storm out/leave if presented with food is now eating it quite acceptingly if grumbling, is good to know.

I don't think you are yet in the stage where you can stop being incredibly anxious about every meal, because you don't yet have a team around you (if you got accepted by the Maudsley that would be great, you could also go for private referral if it's in your neck of the woods) and the longer term perspective. When we lose a battle, say my dd doesn't come down til 2pm and hasn't eaten anything that day, I used to get upset, agitated, mention it every two seconds, cry and so forth. Now, I just say 'catching up to do', how can I help' I tell myself also that no one meal or one day is the critical day in this illness, it's easy to get caught up in the emotion of it all, but ultimately they have to learn to eat themselves (my dd is 17 so in one year will be out of children's services and make her own decisions about even engaging in treatment) and long-term sustain themselves.

I really feel for you, this is a very hard journey to be on, but things will change over time. I thought going into hospital would be terrible for my dd but in fact it's helped a lot having someone other than me tell her what to do!

I really do appreciate all your experience and support.

I need to look at positives: she is at least taking in some nutrition. The fortisip might help her not to lose too much weight too quickly before she's see . There is help at least in process (despite CAMHS crisis team saying 6 weeks wait, the Maudsley called me an hour later to say she was accepted and offer the 1 Dec appointment) and the meds should hopefully start to kick in over next few weeks.

I guess right now it's a meal by meal process and showing DD I won't give up?

The Maudsley are super-experienced, we don't have that in our area and their version of the Maudsley model is a bit questionable at times. So, I know it's so hard right now, but honestly, that's great news that the referral has been accepted. I was wondering whether to get a second opinion at the Maudsley but my dd is now engaging having refused for many months, so I'm holding fast for now.

I also found reading the book written by the Maudsley people really helpful, it seems a lot more of a rounded and nuanced approach than what often ends up delivered by some overworked CAHMS person and it shows you good things to say and do when you are stuck- also the BEAT helpline are lovely, may take a while to get through, but they've listened to me warble on when I was really just overwhelmed, and they are so non-judgemental and nice.

www.amazon.co.uk/Skills-based-Caring-Loved-Eating-Disorder/dp/1138826634

Little (apologies if this has already been mentioned I've not had chance to read all the new posts yet) if your dd is feeling weak and has new symptoms (leg cramps) I'd take her to a&e and get her checked out again. Kids with anorexia can get v sick v quickly and she may now be struggling. If nothing else it hammers home the message to your dd that she is ill and not eating is risky/not sustainable.

Ideally they will do bloods, ecg and more obs (heart rate, bp etc) plus it may get you bumped up the Camhs list.