Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

Joining again as I don't know whether it's the "weather or not " with several of us relapsing or having blips, but also feeling a bit anxious about DD reducing snacks. Apple instead of chocolate bar etc. and increasing the amount of sports
But dd also 17 and feel not much I can do.
When they are 16 and 17 they can refuse parents involvement. She let me take to GP and camhs but had to wait in the car .
What has been useful for us is me contacting her college, they have regular chats with her which she feels useful.

It is tea hard when they're older but I hold onto that the stakes are higher for them as well, if they want freedom and independence they have to eat 🤷‍♀️

My dd is driving now, she bought a car last wend and I've said any sign of slipping backwards I will be taking the keys away/telling the dvla. I am hoping this is an incentive to keep pushing towards recovery as she loves the car and driving.

You do still have a certain amount of leverage even with the older teens.

I keep a watchful eye and imagine I always will tbh but atm things seem okay here. Like so many of you though some ED behaviours never left which I feel increases the risk of relapse.

Mirtazapine is designed to increase appetite so this may help ds

Hi, can anyone do a WFH for me please?

@Dinnerisburnt - I can. I need weight/height (metric only) and rough DOB. You have a DD right? (sex is also parameter).

Thanks @Curlyhairedassasin

DD
03/2007
47kg 173cm

@Dinnerisburnt 75.13%WFH.

My dd isn’t doing well. I really thought (silly me) that we could do this, get her through her GCSE’s with her friends. Sorry about my posts upthread.

It’s her first exam today. She’s so lethargic and not herself at all. Says she hates me. She’s been so vile.

I contacted the gp on Monday for an urgent referral and have now spoken to CAHMS. Because of her exams she can’t get in to see them until 30th May. In a way that’s good because if she doesn’t manage to keep well enough to sit them, it’s on her and not because I’ve forced her in and she’s had a seizure and been too unwell to take them. They’ve agreed because of her medical condition not to do any obvs or blood tests.

My mum came yesterday to help. Dd did eat a little more last night. She’s back to just eating a very limited diet. This time carrot sticks, houmous and grapes. I persuaded her last night to have half of a high calorie cream and chive dip but she would only eat it with cucumber rather than nachos.

The wheels fell off last weekend as school has stopped. She’s been lying to me and the teachers and is now only associating with friends, who don’t get it at all. I tried to organise a day with a very sensible friend and her parents on Monday, a bit of an SOS. I know it’s not usual by her age. Instead she and her friends managed to get her dad to agree for her to drop them at a theme park on Monday. I was fuming. She hardly ate a thing as they went to a buffet 🙄 and 16000 steps. The day before, 10000 just walking round the village. This was despite me explaining to them she shouldn’t be walking far.

Shes really struggling to get out of bed today. I think I might just drop her at her exam time if she really can’t. Miss registration. And if she doesn’t go at all, that is also fine. Her health is the most important.

Thank you @Curlyhairedassasin it was 66% at the lowest. Slow and steady is her pace!

hoping to get started on Olanzapine next week if blood results and BP are ok.

I thought it was low @Dinnerisburnt but didn't realise how low your DD was before. Glad you are moving into the right direction! DD is on Olanzapine and it enabled her to eat again. It's not a magic bullet but it was key for us to get her to eat when she was at her lowest.

@Curlyhairedassasin she’s not been well enough mentally to agree to the olanzapine unfortunately…..and her BP has been too low. She is now ready to give it a go, hoping it’s the game changer that she needs. x

Hi all

I've in MIA for a while concentrating on my daughters recovery

My DD wfh is now 100% she is eating all her meal plan and more and quite honestly it was like ED never existed...even eating independently without thinking
Will go and grab an ice cream etc and enjoy a McDonald's
Just like the old days....

Physically she looks so well, her concentration levels are back, she's talking and not dizzy/ill and in hospital like before!

However.....she is lower than she has ever been before, she's having FBT, body image sessions, youth engagement sessions and while she is going, interacting she just says she hates her body, feels low and is still self harming.....

Could there be something else going on as anyone experienced?

She has a DR review who said no other diagnosis atm but I've asked for a review as that was 6 weeks ago and they have agreed

So the support is in place at home and with the professionals but she feels no better since January 😕

I understand it's a long recovery but she was bouncing around a 4 ( we use 1-10 scale as she find it easier )

1- in bed can't cope
2 - very low / low mood
3 - low mood but ok
4 - some moments in the day content but low mood lingering
5 - so so
6 / 7 happy but we've never got to
This number

The above is just something we came up with together

Thanks for reading x

That's interesting @summertimessadness24 about the hating her body and the low low mood. That's my DD too, and the body hatred didn't really start until after the ED took a hold. Now there's a lot of unravelling of that to do as well. She has always hated herself as a whole (despite the fact that we have told her all her life how amazing she is in so many different ways) but never really confined it to her body. Now she hates her thighs, her stomach, her ribcage is too wide, her hips are too wide. It's insidious. And I do wonder if something else happened but so so many teens seem to be struggling in lots of different ways so maybe it's just the world we live in now.

I also like your mood scale, it makes a lot of sense and puts it into perspective.

Glad your DD is doing better eating wise.

Is there any sign of neurodivergence in your DD’s? I ask because I am autistic, and that was the root of the self hatred underlying my ED. Until I learnt to understand myself. I think it’s normal for the body hatred to persist following a period of starvation (as in the Minnesota starvation study).

Also, I guess the ED is a coping mechanism, however maladaptive, and when that’s gone, people often develop other unhealthy coping strategies such as self harm.

My DD’s OCD takes over when she’s eating more.

Yeah my DD is (undiagnosed) autistic. Would be weird if she wasn't tbh as DH and DS 1 & 2 are, and I've started counselling and one of the first things she asked me after speaking to me for an hour was "are you autistic" so I think all five of us are.

She was diagnosed with ADHD but that was when the anorexia was starting so her focus issues could well be related to that.

I've just finished Hadley Freeman's book and she talked about the link between ASD and EDs so there's definitely something there.

My dd is also undiagnosed, as she won’t accept autism assessment. We’re also a neurodivergent family.

Well DD didn’t kind her CAMHs app today and as I wasn’t in room with her and was speaking to two of the other ladies I was able to say that I didn’t think DDs snack were enough and they agreed with me. We’ve come home and I did dinner and forgot to put babybel on her plate as need to increase intake as she has lost a tiny bit on weight, so went to get it after she had finished and she tried eating it then burst into tears and went to her room as she needed space. I’ve realised that all was smooth sailing upto now because I was basically giving into what she wanted and didn’t realise when one thing was getting upped another was coming down in carlories. So tough mum needs to come out and stay otherwise we’re gonna end up back in hospital

Yeah my DD has been compensating for eating fear foods by having smaller snacks. Sneaky.
DH has been weighed at the GP and has lost 3kg and I know it’s partly stress but it’s also because DD chooses lighter meals at dinner time. I often end up eating toast after tea because I’m hungry. (No chance of me losing weight sadly.)

For those tackling fear foods, how often are you dc having them.

@Cantfindthewordsddstruggling we do it daily until he manages and is comfortable eating it. It's not easy and his levels of distress every time kill me, we probably aren't tackling as much as we should but I have my dd to consider too and I'm really hopeful that with time it gets easier for him.

@Proseccoismyfriend we are doing one every second day as per the dietician’s direction. Today’s effort was a milkshake. we will keep the items in rotation until they no longer cause distress.

on a positive note, dd licked her bowl clean with the pasta dish we had for dinner last night. It’s a heart attack in a bowl with the fat content so I’m really proud of her.

It's so satisfying when they do that, nice clean plate! I don't think there is a right or wrong way and in some respects I wish we rotated more food earlier as at first we were sticking to the same things. Some days are easier than others, but anything new or different sets off the anxiety and I don't always have the energy to tackle it. On saying that we had quite a relaxed meal in a new restaurant and her ordered a pudding and ate it, we had to leave quickly so I didn't sit crying at the table!

With dd fear foods suddenly became much less intense once she hit a certain weight, maybe over 95% wfh. She still struggles with foods like cheese and butter although is completely fine if she can't obviously see them iykwim.

Mummyofdragon sorry to hear your dd is struggling again, has she lost weight? It's useful to think of anorexia being very much a biological illness based on weight loss so talking to them and expecting a lightbulb moment unfortunately isn't likely to work (it might do but usually only in conjunction with a lot of 'forced' refeeding as well).

My dd has been offered a job working with animals which is what she wants to do but I'm feeling very anxious about the hours as it's shift work. They want her to work 12-8, initially only one day a week but the hours can increase once she finishes college in a few weeks.

Currently she still eats the bulk of her days calories at dinner time so I'm worried about how that's going to work if she's out in the evening.

Twice a week, but we’ve had conflicting guidance from Camhs!