Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

I feel as though our girls have been born in the most difficult of times, social media is really still in its infancy and the effects of which have not been quantified, when they are then there must be some regulation and control (how though?). The effects of the pandemic, and the confusion of gender identity affecting young adolescent girls. Born 20 years earlier these issues were not on the radar.

By way of an update my DD is three months discharged from the Eating Disorder Service and physically doing OK, weight maintained and mentally more good days than bad, but she is still clearly struggling with her mental health. She is eating all foods, but does show a preference for sweet things and is exhibiting a bit of a sweet tooth, 15 months ago I would have been delighted with this, now my spidery instincts are concerned, I’m not sure if this is something I should be concerned about.

@D1ANA22 i know what you mean. DD still doesn't have an amazing relationship with food but eats well. Sue isn't really a sweet tooth not very carb reliant. Like you, a year ago I'd have been made up with this but she does eat a lot of bread. I daren't say anything though in case I trigger anything.

D1 my dd is the same, loves chocolate and sweet stuff more than anything.

I just go with it.

I can't even imagine the day my DD will eat sweet stuff again 😞. I hate this. I can't even remember what normal looks like anymore.

@SwattyPie likewise. It was DS's birthday yesterday and she helped me decorate his cake (which I know probably wasn't allowed but meant a lot to DS) and she got a tiny bit of cream on her lip and freaked out.

It's upsetting but these posts do give me hope she'll enjoy the things she used to love again some day

Also - I will ask this at DD's medical appointment next week, but she got sent home from school on Friday as she scratched a little spot on her lip and it then bled for an hour so got sent home. The bleeding stopped with ice but now is very sore and swollen.

Could this be something ED related? Seems very strange and not usual for her

Last night I dreamed we were on a cruise and dd was piling up her plate at the buffet and she was smiling and excited. It felt amazing and dh and I were looking at each other both really happy. But then as I watched her I was saying to dh 'I know this is just a dream' and his face turned sad and then I woke up. 😪.

As if life isn't shit enough my dreams are taunting me. I used to have dreams like this after my mum died where I would go to her house and she would answer the door looking well, like she did before cancer. I felt huge joy but I knew it was just a dream.

Just re read my message - sorry, I didn't mean I hated reading the messages you all write - I agree - they give me hope. I meant I hated the situation and the illness. Apologies if anyone misinterpreted it. I can empathize with the cream - my DD said she accidentally licked the spoon after weighing out some almond butter a few weeks back. Imagine 🙄😞. Anyway, the sun is shining and it's a long weekend. I'm going out for the day - someone else is in charge today! Have a good weekend all 🤞🏻

Dd is the same with sweet stuff. Her advent calendar is still on the shelf. I think she had 3 or 4 of the tiny chocolates. I remember the joy. Maybe she'll finish it this year. She had a bit of Easter Egg but it's remained open in her room and has a nice layer of dust.

Enjoy your day SwattyPie

Gah just lost a post!

Little bleeding that doesn't stop could be a sign of anaemia or vitamin K deficiency so your dd needs to get her bloods checked.

I've had similar dreams Bagpuss it's upsetting.

The way I got dd back to eating chocolate was to say this is your pudding and slowly increased it. For example her 'pudding' last night was a box of mint matchsticks and a curly whirly! She also has to have something like cake or chocolate with her lunch (we call it the third thing, if you ever hear a stressed looking middle aged women in Costa telling a pissed off teenager to get a third thing that'll be me 😉)

The Easter eggs also get eaten this way likewise the advent calendar chocs.

Yes they're is light at the end of the tunnel - DD is proof of that. Keep hanging in there because you'll get there eventually.
This year all Easter eggs were eaten

Finding everything very hard today 😔. Have sent husband to the shop for wine and chocolate. For me. Big sigh. Hope everyone else is having a better weekend x

I hear you @SwattyPie - not great here today either and DD made me bleed (not badly but not good either). Hope you're ok. It will get better for us both, I hope x

@LittlePickleHead here's hoping tomorrow is brighter. Hope you're ok x

Not great here either, DD having stomach aches and feeling sick. Not sure how to get the calories in. Such a viscous circle

Hi. I’ve been following this thread for while, just wanted to say thank you ladies for all the useful advice. It’s been so helpful to read.

My DD, now 15, was diagnosed last October, immediately signed off school(WFH 70.78)and put on the meal plan. She went back to school in January, still only 78%, but so desperate to go back. We and CAMHS felt it was best for her.

In all honestly, that period feels like it was the ‘easiest’. We controlled all her food intake and whilst we did have very bad days, she was fairly compliant in the end.

Now, it’s all just so depressing. We don’t seem to have moved on, if anything, it’s worse. She wants to eat independently but she eats just enough to maintain c78% WFH. She’s constantly moving, exercising; and she has really bad OCD. She is so restrictive and is continually trying to eat less, reduce her snack etc.

She won’t engage at all with CAMHS; she goes hysterical before appointments as she knows she will be weighed and then doesn’t really talk at all during the appointment.

We have just cancelled our summer holiday abroad as realised she won’t be able to cope. When we first mentioned we might cancel, she was really disappointed but now she agrees that she would struggle.

I can’t imagine it getting better. I’ve no idea how we’ll get there 🙁

Hi @BlueDeer Sorry you'be found yourself here. I'm in a similar rut. Feel like I'm counting down the days of her teenage life, hoping that with maturity, may come further motivation. Or boredom on her part. Or perhaps less responsibility on my part? I know it doesn't really work like that. Anyway, I tell myself that at least with the rut we're in, she's not losing any more (🤞🏻). And it IS better than it was. We're not both sobbing on the kitchen floor anymore. Hang on in there and think about how far you've come. One day at a time. Don't try and look too far ahead.

BlueDeer Welcome. A similar story here. Things have improved from where where we were in the first few months of the illness but dd doesnt seem to want to get better and refuses to engage, refuses meds, doesn't leave the house and makes it difficult for me to leave the house. We are stuck in a weird lockdown of our own making. Like SwattyPie I hold on to the hope that maturity and boredom will bring about a change. Take each day as it comes and try and do things for yourself, it's very easy to neglect your own mental health when you are a carer.

Hi bluedeer unfortunately in your situation I think I'd go back to basics, you control the food and she only gets to do the things she wants to if she's eaten. I appreciate that's not what you want to hear. She needs to get to a much higher wfh (imo) before you'll start seeing an improvement mentally and physically.

Thanks all, appreciate the comments.

I’m definitely hoping that at some point she realises what she is doing but as you say, need to take it one day at a time.

And you are probably right @Girliefriendlikespuppies , I do think she is too underweight to see any real improvement.

It’s all so chicken & egg, in terms of weight gain & therapy/changing mindset. We are waiting to see about Meds although I don’t know if she would take.

@BlueDeer as others have said, you may need to return to basic refeeding as that will probably have provided the best results as your DD is at this stage - to push through the barrier of weight restoration. I wish you luck, it is possible.

How does everyone cope with work, day to day living? DD is on my mind 24/7, I am struggling to get my work done, I don't sleep well and it is affecting my physical and mental health. Does anyone have any strategies / go to places to ground themselves? How to work with this constant distraction / worry and at the same time try to function? I would appreciate any advice as I am struggling atm.

@Nomoreplease23 I'm not sure I have which practical advise but I find myself in the same situation. I've already had 4 months paid sick leave to deal with DD and she's recently relapsed so I'm having to work through it.

One thing that has helped a bit is starting Sertraline, it's helped numb the obsessive thoughts and panic slightly so that if she's at school I can shut off and focus on work. Plus the ED team have been really adamant I should not stop work again as DD shouldn't exert that control.

The reality is that she's foundering a bit and we'll probably have to go back to basics with full on no compromise FBT, so I'll probably have to take some more time off to deal with that as it's impossible to do a good job whilst facing a DD on hunger strike.

So I empathise, it's the hardest thing to try and cope with

@LittlePickleHead thank you for your comments - I have had 5 months off work, I feel guilty as my colleagues are supporting my usual workload - I used to do a lot of overtime, completing basic hours is a challenge now.

Sorry to hear of your DD's relapse. I had sertraline when DD was diagnosed, I think it did help and I stopped taking it as I built up some resilience to the illness and the situation - but recent events with DD have pulled me back into an anxious state.

Like you I am better when DD is in school, weekends and holidays are harder.

DD is sitting her GCSE's and she will have study leave, exams and then a long summer holiday - this is causing me further anxiety as to how we (she) will cope with the extended break. School (and friends) have been her motivator, without that lack of structure I feel that she will struggle - it will be similar to lockdown that caused her ED originally. Not sure how we will cope for so long, particularly as DD says she won't come on holiday with the family in summer (or ever again).

Are you blind weighing? We would never have made progress if dd knew her weight so I'm a big advocate of blind weighing.

@Girliefriendlikespuppies how do you blind weigh at home or was the blind weighing at hospital? DD refuses to go to CAMH and standing on scales backwards at home isn’t working. Do you continue to blind weigh once discharged from the service?