teen eating issues support thread

[myrtleWilson]

Hello,
would anyone be interested in joining a thread to support each other as we support teens with eating disorders @MNHQ - I'm tagging you in as am conscious of triggering issues and wanted your ok/ground rules to such a thread..

Happy to share our story with DD if others would feel it is helpful...

I have to admit I don't really know what they're basing the calculation on, apart from her height, age, frame and how much weight she lost between March and July (she was tiny - but superfit and healthy, a keen dancer and runner - even before she started losing weight) Our therapist this week offered to email me the weight-for-height chart they work from but so far it hasn't arrived

GCSEs - Day, my dd is in year 11 too, and my feeling at the moment is who knows if they'll even go ahead - we had a parent's evening tonight and they were pretty much unanimous in saying that her good record in y10 would be taken into account if it came down to teacher assessment

I would certainly love to see the data that shows 'mum positivity' and 'mum exhaustion' as variables, Day - oh, but hang on, I bet there isn't any I would also love to know if there are specific targets for ED staff, as in whether they have a time limit to get patients out of the wards and home

Actually this throws up all sorts of interesting questions

Our therapy is the opposite of what you have described - entirely focused on the ED, no talking about possible causes or comorbidities yet Therapist has asked dd to think about whether she wants to sign up for body image work (she says no) or counselling for anxiety and low mood (she says maybe) - the feeling is that this would start in the new year, after she has (hopefully) got closer to that 90% target

Good luck at the hospital today and I hope you don't have to put your walkout plan into action

ah day am not surprised you're shattered - it is such a lot to contend with.... am glad the experience has been better this time around...

With DD during her hospital bounce in/out and for a few weeks afterwards, I felt that (and the team agreed) she had little room for manoeuvre and was perpetually a bad day away from being in hospital. To give you something positive - it is now two months since she was last discharged. Obviously not everything in the garden is rosy - not by a long shot - but two months at home is a step in the right direction and I hope the same happens for your DD.

Small weight loss for us today but in context of a very difficult week, no postural drop that caused alarm so yay! Meal support worker is coming round this afternoon for dinner which is the trickiest meal so we'll see how that goes...

Oh bless you day 💐** can you you pencil in some self care for yourself while your dd is back in hospital? Even just a long bubble bath or something, I know things are limited with covid.

It's my bday tomorrow and really the only thing I want is a day of dd eating normally, too much to ask for? 😉

, Day, this roller-coaster ride is cruel but I agree it's an opportunity to take some time for yourself, to regroup

Happy birthday, Girliefriend and I hope you get what you've asked for

Fingers crossed for the meal support, Myrtle and all the best for a positive weekend for everyone

Happy Birthday tomorrow girlie

Meal support was in meal support leads words "intensive" and we've had a massive crash since with lots of self hate but we're out of that now so hopefully calmer night.

Next week we have two meal support nurses coming out at least once per week, individual therapy, family therapy, a phone call with Consultant and a case review - so basically we're moving in with CAMHS.... But I'm thankful....

Positive weekends all round theyseeher

Oh, the masking can be maddening, Day

At dd1's CAMHS meeting yesterday we were discussing whether dd2's ED was triggering for her (it clearly is, to the extent that she won't have anything to do with dd2 and has even blocked her from social media!) - and dd1 came out with, "Not really, because I never had an ED, it was just you that said I did, so I went along with it"

It does give you an stubborn extra defensive layer to try and fight your way through, which is exhausting Best of luck with the assessment - and everything else

Thanks for the bday wishes, been a nice morning so far. Had a lovely handmade card from dd which made me cry, reminds me that she is a lovely girl and the anger and frustration she's thrown at me is the ED talking.

Day the Camhs team around you sound so inconsistent, is your dd in a specialist unit for adolescents with EDS?

Yy to the masking, I can see straight through it now but she's very convincing to other people including close family.

I'm sure my dd would say the same they! She said the other day she doesn't feel any different now to last summer when she was on full starvation mode pre help from Camhs. It's clear she does feel better (more relaxed, more energy etc) but shes so stubborn she'd never admit it!!!

Hope everyone's weekends went okay?

Ours wasn't too bad, I didn't get my bday wish of dd eating normally (it was a big ask tbf!) but I did have a nice day and we did get a take away which she did okay with.

Today she's also done well, she had a small wobble over the cookie I asked her to eat for her snack but otherwise has eaten everything I've given her.

I mentioned something earlier about the time I took off work when dd was ill ( I took a month off work initially to help to kickstart the refeeding) and dd jumped straight in with 'I wasn't ill.' It's so weird that she still thinks that even now several months down the line.

Can't remember if I mentioned but my dad's not been well either, he had a heart attack a few weeks ago and last Thursday had a triple heart bypass. It's taken a few days but he is slowly starting to recover now.

Will be glad to see the back of this year!!

Sound like you dd did really well Girlie , so pleased the weekend was relatively stress free for your birthday. Sorry to hear about your dad but it’s great he’s doing well. Yy to being more than happy to see the back of 2020, I keep wondering what is left for it to throw at us.😩 That said 2019 wasn’t that great for us either. I keep looking back to the years before and wondering why I wasn’t more appreciative of life how it was iykwim. I think big things like your dad makes handling kids with this so much harder. They are doing it to themselves although they can’t help it and I’m ever aware of other people struggling with things they have no control over and the need to make the most of life. I see other kids in the hospital suffering and it feels so wrong that we’re here although I know she can’t help it. The nurses are amazing and convey zero judgement though.

Weekend here was a bit stressful. Hospital visits, tried to get some sense of order to the house (and failed).Other son had his turn at keeping us on our toes and reminding us we have a third child.Ds2 had a good weekend though. The vomiting has started again with dd but she did keep down breakfast which was a small win. It’s really odd as we have no vomiting at home. I wonder if it’s the stress of have having no control and having to eat properly in hospital, being tubed if not etc.

I got a bit down as realised by the end of next week she’ll have spent 5 weeks of the last 2 months in hospital. Just wondering if we’re in no man’s land. Does anybody know how many hospital stays they can have before they do focused therapy on the ED? I watched that 24 hour in A&E programme with the Anorexia admission. Just seemed odd that that girl seemed to have had quite specialised help before admission. We seem to be the other way round although I’m wondering if some is because dd doesn’t need to lose a lot before being compromised. Who knows, it’s bewildering. How is your dd doing Bella? Does she cope with the tubing ok?

Theysee you know your dd with ASD that got over the ED,what worked? I’m just worried that dd will get locked into this if she has ASD or traits. How long is it to hear back from screening?

One other question do the family therapists just focus on us getting the food into her?

I do feel we should have somebody in CAMHs to answer all these questions.

Oops that was me DayB1Day

Hi everyone

Am glad your Dad is on the road to recovery girlie

Difficult few days here - lots of anger, I wonder (perhaps hopefully) that the anger is because the anorexia is feeling under pressure??

Anyway, I wrote this blog in a cathartic release of the stress - hope it is okay to share here?
anunwelcomejourneywithanorexia.medium.com

Lots of anger here too this weekend, Myrtle - like you, I'm trying to look at it positively

Day, I think with dd1 there were four factors that worked for her

1. She respected and trusted her therapist - this is HUGE for dd1, who will completely reject any help from anybody she takes against (and this can be for the most random reasons) We just happened to luck out here (not so much with her CAMHS counsellors unfortunately)

2. She actually enjoyed having a meal plan - the routine and repetition of it made her feel calm and (paradoxically) in control

3. She responded strongly to the 'personalisation' of the ED - being able to separate it from herself and recognise that it was not, in fact, part of her identity was a huge epiphany

4. We had a long-planned and looked-forward-to family holiday to Italy - she took 'time off' from the ED while we were there, and this was really the beginning of the end of it, as she realised that she was, in fact, able to switch it off at will (not all the way - there were still tricky moments but in retrospect it was the turning point) (also, she was within reach of a decent weight at this point, or we'd have cancelled)

Obviously each child on the spectrum is different and not all will respond to the same things, but all of these helped dd1 in their different ways

Dd2 (NT) is quite different though, unfortunately

They that's really interesting and sounds a lot like my dd, she has also responded well to a meal routine, I think she trusts the Camhs support worker (although he's off sick again at the moment 🙄) and she also responds to depersonalisation of the DD (I call the ED Nigel so if she is moaning about eating something I'll tell Nigel to shut up 🤣)

My dd weirdly has also been angry today, she said school had been difficult today but any attempt to discuss why was shut down 😕

Hi all.
So sorry to hear your dd is back in hospital @DayB1Day it’s so disheartening. I feel like anything I see as an improvement dd sees as a failure. She finally gained 200g today and moved onto day 2 of the meal plan which has upset her and caused kick backs, meltdowns and resistance.
She’s been in 6 days and this is the first gain she’s had. I just feel like she’s fighting every step of the way and I’m going to lose it soon.
I’m basically getting my girls (9 and 10) off to school then hospital then home and act normal for them then repeat. The house is a tip and I’m smoking again so my chest is bad and I just want to run away.
I just can’t see a light at the end.
Work arranged counselling for me so I’m speaking to someone tomorrow.
Sorry I can’t namecheck, it’s hard to go back and forwards on my phone but I’m in awe of you all and your dds dealing with this.

Anyone in the North East by any chance?
She’s on her last chance today before tube feeding. She’s upset as she feels she’s doing her best.
Head fuck.

I am @BellablueaBella... how can I help?