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 all, joining you if I may. DD diagnosed with ED in July, FBT since then. Going ok until November time, weight increased but so did suicidal thoughts and self harm as every kg has gone on. Now about 88% wfh and been stuck here for months . Self harm is severe and daily. Can’t seem to push weight as results in severe self harm ( including hospital) can’t reduce self harm as stuck in ED. Anyone else stuck between a rock and a hard place of two such competing mental health problems?

My dds suicidal thoughts and suicidal ideation were terrible for around the first 6 months of FBT and I wouldn't say even now it's gone completely but it did lessen once we got passed a certain point weight wise. For us the answer was to keep pushing food and increasing weight and holding onto the faith that the brain would start to heal.

We didn't go down the route of meds (although the psychiatrist wanted to) but I know lots on here have and have had positive results.

Dd is seemingly in a good place atm, she made me some paper flowers with I love you mum note attached for valentines Day 🥰 Given she couldn't admit to loving me and at times actively hated me for long periods of time over the last two years it's especially lovely.

ah girlie - thats lovely - best flowers you've ever had I expect!

@AskAlexanotme - welcome but so sorry you're here too. Can I ask - is your DD receiving any support from CAMHS about her self harm. My DD as part of her FBT also had something locally known as IHT (Intensive Home Treatment) which was about working out what her triggers were for self harm and putting in place measures to if not avoid but de-escalate. I've posted previously about the 'safety plan" she and the IHT created and would be happy to share again. FWIW, initially I was sceptical about IHT as I felt it was aimed at younger teens (mine was 17/18 at this point) but soon her IHT support workers found the right groove with dd...

@myrtleWilson - hi, thanks for the offer I am reading back through the threads and found your post about safety plan - it’s similar to what my dd is currently working on. she has quite a bit of support from Camhs. As well as the ED team she has had some support from CAMHS outreach and now moved to IHT who seem a better fit to address the harm and she manages to communicate with slightly better.

Unfortunately she is so reliant on harm as her coping mechanism she is struggling to engage with any methods to reduce or de-escalate as she doesn’t want to stop or reduce harming. Any challenging day with food has a direct consequence of serious harm so we just plod along maintains weight most of the time. we have to go to dressings clinic 2-3 times per week sometimes to get sounds checked and dressed,

At the moment I am just praying the IHT team can find a way to get through to her. They are trying out lots of different strategies so I have to hope something helps.

Should have said she is already on fluoxetine which has been gradually increased to 40mg over the last few months and seems to have a slight improvement on mood with increased dose.

Just a quick thanks to everyone who posts their personal experiences on these threads. I am currently working my way through them and it is so so helpful when no one in real life has any real experience or understanding x

Hi @AskAlexanotme - it took us a while for IHT to get to know DD well enough (not helped by being in lockdown tbh) - the safety plan did help her de-escalate a bit. You'll have seen from my posts that holding ice cubes was the most effective technique for us. In terms of cessation, DD just decided one day she'd try to stop - this was part of her first attempt at recovery (last March) - she relapsed but began recovery again a couple of months ago. Self harm urges are still there but she's much much better at telling us now when the urge starts and before she feels compelled to act - thankfully she's been self harm free for a few months now - I hope that gives you some hope there is light at the end of the tunnel...good luck and hope you find the board useful for as long as you need it.

Does anyone know know to get your child into residential. I just can’t cope with FBT. I’m not strong enough. I’m in pieces there’s no support and I can’t do it anymore. Last appointment she was at 89% wfh so she’s probably too “well” for residential. Anyone know of anywhere even privately?
I can’t even remember the last time my daughter was even nice, the constant battles, screaming, tears, etc I just can’t do it anymore

@C4tintherug I'm so sorry to hear this. I can't help over residential admissions but don't want to not reply.
Despite the wfh, is she eating and driving?

C4 I'm sorry things are so hard, what support have you got?

I remember thinking I want to hand my dd over to someone else, it's so hard and the illness is soul breaking for everyone.

Have you spoken to your Dr about feeling overwhelmed?

I don't know about private units, there's the Priory ones I have heard of but I'm guessing any private unit will be £££££.

If your dds with an Camhs team talk to them about how you're feeling, my dd was absolutely horrendous at 90% wfh and so ill physically and mentally.

How much food are you getting into her at the moment?

We had a nice he first meal refusal in ages last night, dd ate some garlic bread and salad but refused 90% of the pasta. Then refused pudding at which point I started getting very twitchy, eventually managed to get her to have a milkshake.

She's been generally good for ages so it freaked me out, we chatted later and she'd had a crap day at school...

Think she's ready for half term next week, the school are really ramping up the pressure of exams as well 😕

Hi @C4tintherug , I recognise myself in your post from last year. (My DD has been weight restored for 6 months now, but MH issues are not resolved) This phase you are in is gruesome. Utter despair. I spent the hours I couldn't sleep at night trying to find a private clinic... id have paid anything to get Dd better. But what I did find was lots of internet articles saying that they aren't the golden solution. There is a good article on this that is searchable by mark Austin (sky news reporter) ... they withdrew their daughter as the environment at a residential clinic was fuelling the issue. (Comparison to others and deterioration in mental health further) .
Somehow I found the strength to nurse DD at home. It's one of the worst experiences I can imagine. But you will find the strength. Perhaps such clinics do work for some kids, but I know my competitive Dd would have tried to be the illest there!

I do know that when I was looking there wasn't a single free bed in any private clinic in the UK.. (I spoke to a few) the nhs had bought them up as had too many cases. I found a live link for free beds... none. Such a tragedy what covid has done to this generation .
I can hear your despair and want you to know you are not alone. You will get through this. You are being an amazing mum to your child, and it will get better, slowly at first. But it will. Sending love x

Hi everyone, sorry I dip in and out. I feel where we aren't in such an acute phase it's better for my MH to think about other things.
It's nice to hear some positive stories.
@Girliefriendlikespuppies , sorry you had the return of the beast last night. I know the ramping up of exam stress is a real issue for my DD currently. I'm holding on for June 16th and end of exams!!! It's going to be a bumpy few months

Sm** me to, I keep saying to dd it's just a few more months. I can't wait until GCSEs are over.

Found a stash of vitamin tablets in a bedroom drawer this morning 🙁 I don't even know how she does it as I watch her swallow them!! It's the lying that concerns me, I am so tired of it all.

Thanks for your comments. It’s just hard to see a way forward at the moment. Have cooked dinner and been called a f-ing bitch, currently refusing to eat it and we are in a stand off.
How long do we wait it out. So tired of this every single day after day after day.

C4 it's beyond shit and I wouldn't wish it on my worst enemy. Are you on the fb page? They are useful for support (most of the time.) That group would say you keep going with dinner for as long as it takes and some parents on there have kept going for hours. I personally couldn't keep going for hours as it's just too hard.

What leverage have you got?

I have taken dds phone off of her and also threatened not being allowed to come on dog walks at times. The phone she would get back immediately if she ate the meal.

Ultimately if she isn't eating or is only eating 500 cals or less you can threaten and take her to a&e.

@girliefriendlikespuppies - so sorry to hear of the return of food refusal. Hoping it's just a blip - how was she yesterday and this morning? @C4intherug - Don't know if it's any help, but my DD's team are saying just go with 30 mins of offering the food, and then offer a hi-cal drink (Ensure or Fortisip - available on prescription) for 20 mins (so there is some part of the day that's not about F*ing anorexia...). Then off to A&E/Crisis line if less then 500 cals per day for 48 hours.

@C4tintherug - I agree with @NanFlanders - we got stuck in a position of taking hours over each meal to the extent that we'd finish one snack/meal and it would be straight onto the next. It wasn't fair on DD - it made the entire day about eating/food - which is just what the anorexia wants. You (generic you) need to create space in the day where the ED doesn't dominate.

When we had meal support they followed the 20-30 mins for meal/snack, then offer Fortisp, then count as refusal and call for support once your particular trigger level is set. Its not easy but it is better for you all in the long run

Sorry @C4tintherug - have just checked and realised I've just repeated myself to you - you said you were going to check in with your support worker - did you get anywhere with them?

Thanks nan she ate better Ystd evening, I had made a fishpie which I know she likes. I confronted her about the vitamins and she just shrugs her shoulders. She looks so pale at the moment I'm wondering if she could be anaemic...

Am so scared of a relapse or missing something as no one is keeping an eye on her (other than me!)

I spoke to support worker about drinks- she said we could “look into it” but had to have meal support first, so having meal support next week.

Meal support hopefully will help - although for us it was never the same dynamic as when it was just me and her dad. DD never swore or threw her food around when meal support was present - part of me really wanted her to so that CAMHS knew we weren't making it up but they've seen it all before (our support worker had previously supported in a tier 4 unit).. Hope it goes well - if you have a choice of meals for them to attend, pick the one your DD most struggles with would be my advice.

Right, so we are now one week today from discharge from hospital (to stabilise heart and re-start feeding). DD is leaving ever larger portions of breakfast (hid bran flakes in her PJ pockets yesterday!), and refuses the juice, refuses morning and evening snacks (and refuses Fortisip alternative), won't have milk with afternoon snack, and will eat only Dairylea wrap (which could be worse, I suppose) for lunch, then 2 Fortisip for tea. I'm calculating that's about 1000 cal per day, which is definitely too much to be readmitted - she was on about 300 cal per day when heart started struggling - but not enough to get better at all. Feel a bit stuck in limbo really. One of her issues, is that if she swerves a meal one day, the ED won't let her eat it the next day, as she has proved she can live without it, so it's 'greedy' to reinstigate it , so the only way is down.... How do we get back on track?

@NanFlanders you have to wrestle the control back from the ED. Use whatever leverage you can. Life stops until she eats. And she has to eat everything. Otherwise ED sees it as a little victory. You have to make not eating harder and worse for her then eating. You need to take all choice and control away from your DD because then it gives the ED a stick to beat your DD with. Tell DD that you know what she needs and if she needs to she can tell the ED that she has no choice because YOU are making her eat it. My DD used to say things to me like “you’re making me eat this aren’t you Mum? I literally have no choice.” She needed to hear it so the ED could hear it and that was the permission she needed to be able to eat. Remember that inside your DD is desperate for you to take control so she can get better!

Yeah Nan I agree with everything roller has said, you have to stand firm and use whatever leverage you can. Life stops until she eats, food is medicine etc etc. I used the 'when and then' technique with dd at times so 'when you've eaten that then we can go on a (v short) walk/ watch a film/ play a board game/ go to etc. Without eating her life should be completely boring/bedrest.

Also when she does start eating distract distract distract, talk about anything else other than the food (other than to say keep going/ another mouthful please).

My dd isn't great again, being off school really brings her down. The self harm is back as is some weird sneaky behaviours that I thought we'd seen the last off (hiding food, smearing etc) That said she managed a subway out Ystd, she used to love subways but has refused to go anywhere near them since the ED. She did okay with it although didn't eat all of it and moaned about one of the fillings I put in.

I also made her buy pick n mix in Wilkos and she had it for pudding (I helped her out with a few sweets 😉)

So as always up and down.

Thanks @Rollergirl11 and @Girliefriendlikespuppies. Girlie - sorry to hear your dd is having a hard time again. Your posts always make me really admire your stamina - hang on in there.

@Girliefriendlikespuppies you have amazing resilience and one day your DD will appreciate it.

We've had a bit of a lapse. DD has never, other than a few days here and there, not eaten but she is good at controlling her food so as not to put on weight. Which means that she's never been in grave physical danger but it means we're stuck. She knows to the last mouthful. And having eaten freely and wonderfully on our three days away for half term, she's been cutting out snacks since then. The clinic says she needs to be above the weight she got her period for three consecutive weeks in order to unlock some more independence. She is determined to be at that weight and not a gram more. So she'll inevitably fluctuate below it. FFS it's one measly kg, just put it on!

And she's being unbelievably horrible to me and not to her dad - I do feel that whatever mothers do and whatever sacrifices we make, it's never enough. She keeps being rude about the fact that I'm not getting much work done at the moment. Doh, why do you think that is?