Teen Eating Issues/Disorders Support Thread 2

[myrtleWilson]

Our first thread is almost full. Here is our second - a place to seek and share advice, to lament and scream with rage and sadness, to celebrate each other's successes as we navigate the choppy waters of supporting our children with eating disorders.

All are very welcome, whether you're at the start of this journey or a more seasoned traveller.

I'll link this thread to the first one and then I thought it may be helpful if on joining this one we did a quick precis of our current situation.

www.mumsnet.com/Talk/eating_disorders/4016379-teen-eating-issues-support-thread?msgid=104736115

I think re compulsive exercise you literally have to watch them 24/7 including sleeping in with them. Not sure how that works in practice though as must be virtually impossible. That's good she's told you though myrtle and also that dd came up with some strategies.

Lougle that's the sort of thing I'd do re forgetting what the Dr said, I think our poor brains are so frazzled trying to get through the day it's understandable!! Sorry to hear you had another migraine.

Def up for a meet up!

Watched a lovely film this evening on iplayer called This Beautiful Fantastic which was very easy watching and has the hot priest in a nice way to spend a couple of hours.

Yep you have to watch them all the beeping time. Luckily the olanzapine put paid to my DDs late night/ early am exercise as she zonks out last thing and I have to wake her in the morning. She was v sneaky tho the rest of the time....sit ups in the loo, burpees in lessons. Running on walks. Etc etc. It’s awful. She asked me the other day when she would be ‘able to do what I like’ ie exercise whenever.... I said not until she could stop standing all the time, go on holiday and not exercise at all, walk up stairs instead of running and generally behave like a normal teenager.... her reply? Prob never then mum

@myrtleWilson the fact she's confessed means she's unlikely to be doing other stuff on the sly? If she's looking to you to police it that must be positive. The compulsion must just get overwhelming at times. We have pacing to deal with still - even now after her IP stay. It's always been a nightmare to stop, but we just challenge it every time we see it happenning and try to help DD articulate the feelings she's having around it. ( she rarely does tho')

DD up and down like a yo-yo today but to be expected..has basically managed her plan with just one grape throwing incident which could've escalated but didn't. Progress!

Interesting doing census today, I let the kids do their sections . DD rated her health as very good and put no to do you have a mental illness likely to last more than 12 months..... I went back in after and changed it. To Fair and yes.... and put me down as her carer. Do you think that’s appropriate? Not submitted yet as DH needs to do his section.

Is anyone seeking counselling themselves on how to cope/cope better with their dd illness ?
My sneaky ciggy/having a cry in the shed moments are increasing and I find I’m not coping well at all 😔

Lots I had the same thoughts re the consensus, I also debated putting myself as a carer. Dd did admit to having a mental health problem though which is something I guess 😕

Jojo I think some of the ED charities like BEAT offer counselling for carers, if you're struggling speak to your GP for advice as well. I think the toll on our own mental health looking after a child with an ED is massive.

I did my family's census. I put yes to mental health.

The olanzapine definitely works for DD1. Last night was anger, fear, shaking and only 350 cals. This morning was starving hungry, joking, and she ate 1290 cals for breakfast.

She even said 'can I have the olanzapine today because I don't like being angry and scared.' I told her that her Psychiatrist was the boss, but we're talking to her on Tuesday.

Great news @Lougle I am so glad the olanzapine is helping your DD it must be awful to be plagued by such difficult thoughts 24/7. my DD said that the relief from the worst of the bully was immense. She said it felt like a huge weight had been lifted and that she could finally eat without total fear of her thoughts afterwards. I can’t see her stopping the meds anytime soon.

BTw I am reading a book called Decoding Anorexia which is all about the biological and evolutionary side of AN. It is fascinating.
Last night I read that olanzapine actually works on altering hormones in the body that are often faulty in AN patients -hormones which control hunger, appetite and saiety. The whole book is amazing if you can get past the slightly hard biology (for me a novice!) and backs up the idea that food needs to go in above all else, above therapy, above looking for reasons and that the starvation and malnourishment is behind nearly all the symptoms including neg body image, calorie counting, excessive exercise etc.

Have any of you heard of Orri? in London. Heard they take 16 and up? Seems very expensive though

@Jojo2347 sorry you're struggling so much. This illness is unforgiving and can feel relentless. I had a few sessions with Mind, organised by my gp - they were offered fairly quickly ( within a couple of wels) so you cld try them. I've never accessed Beat support but probably a good option too. Sending virtual hugs.

@afewtoomanychoices haven't heard of Orri but only investigated younger child options when we were looking. Just had a quick look...hard to tell just by looking at the website blurb but appear only to offer intensive D.C. Have you spoken to tgem directly?

That's great news @Lougle and really fascinating @Lottsbiffandsmudge - am not a science minded type so I'll leave the hard stuff to you!
@afewtoomanychoices we contacted Orri when it looked like the transition to adults was going tits up but haven't pursued it as things have settled down. They seem to have a good level of engagement on Twitter and were proactive alerting me to a free webinar (I linked the webinar upthread) I have an email/coatings if you are interested?

@Lottsbiffandsmudge

BTw I am reading a book called Decoding Anorexia which is all about the biological and evolutionary side of AN. It is fascinating. Last night I read that olanzapine actually works on altering hormones in the body that are often faulty in AN patients -hormones which control hunger, appetite and saiety. The whole book is amazing if you can get past the slightly hard biology (for me a novice!) and backs up the idea that food needs to go in above all else, above therapy, above looking for reasons and that the starvation and malnourishment is behind nearly all the symptoms including neg body image, calorie counting, excessive exercise etc.

That's really interesting. Yes, I'm convinced that it's the food that matters and the whys/wherefores can be addressed later. It's a bit chicken/egg, in that if DD1 was eating enough, she may not need the olanzapine because she wouldn't be having the awful thoughts she's having. But then, if she wasn't having the olanzapine, she wouldn't be eating enough to cope

I get so cross when I read of sufferers denied medication that can clearly help. I feel lucky that my DD has a pro medication psychiatrist.

You're making me think I should really get dd on the olanzipine!! It's hard with dd as she does eat probably around 2000-2200 calories a day and is gaining weight although it's slow. Mentally however she's still very stuck and life is very restricted due to when and what she will eat 😕

We fell out today as dd had agreed to eat lunch in town (either Greggs or Subway) but then changed her mind. I lost it a little bit and had a rant about how this spring/summer was going to be shit unless she made some effort to push herself out of her comfort zone.

I then went into Tescos and bought the highest calorie laden lunch I could think of for dd to have at home to prove a point.

I'm just bored and fed up of at all, would be nice to think about something else for 5 mins!!

@Girliefriendlikespuppies I feel for you I’m
Exactly the same - I feel so awful when I lose it too - I know it’s not their fault but being stuck is no fun for anyone - not the sufferer or the carer - we are bound by 8.30 breakfast 10.30 snack 1.30 lunch 3.30 snack 6pm dinner 9.30 snack - I can’t remember when I didn’t think of anything else - she said to her KW that she thinks I’m playing too safe but when I try to walk out of the quick sand I just get pulled under again 😔

I started a new job 3 weeks after diagnosis - and 2 days after admission - whilst my new employers have been really very supportive I’m sick of pretending everything’s ok and putting a brave face on it all - I feel my mental health is teetering on the balance and all this whilst trying to devise a meal plan, negotiate the minefield of this illness without my legs getting blown off and trying to be positive and cheery and not lose it with DD because I know she is suffering more 😔

It's so hard to keep it all together.

@Girliefriendlikespuppies it's honestly like night and day. DD1 came to be at 2.30pm and said 'I haven't had a Nutella sandwich in ages. Can I have one?' We negotiated that she had to have peanut butter, too. Then I added butter . A chocolate brownie to follow made 820 calories for lunch.

But, about 3pm her mood started to shift and she said she was feeling angry again. So I'm unsure how much we'll get in for dinner, but she's at 2100 calories so far today, so I'm feeling fairly relaxed about it.

@Lougle that’s really well done I’m struggling to get over 2k she tries to have too much input - and if it’s over this or that calories she won’t eat it 😔

@lougle are you going to ask psychiatrist to up the dose again? She could take it all in the evening if that helps her grogginess
@Girliefriendlikespuppies it may be worth a try? Some patents don’t say they can see a difference and so stop and then find it was making a difference!

DH booked a caravan holiday at May half term today (so he can see his family who he hasn’t seen since August) and tbh I am not sure DD will be up to it.... I am actually dreading trying to do all this on a tiny stove with a minute fridge....but of course he never thinks about that. It won’t be a holiday put it that way..,.

Yes looked at Orri website and it looks great. Seems they do daycare and you step down to less days as you need it...
Their instagram also looks interesting
Would need DD to agree though!

@Jojo2347 you might have to reset the boundary and say that she just doesn't come in the kitchen. Not easy. I'm certain it's only the olanzapine that is helping. She asked for a Costa frostino earlier, so I bought mint choc chip ice cream and ice - 443 calories in.

@Lottsbiffandsmudge yes, I'm going to ask for her to advise - she talked about a few different options on Friday - reducing, switching drugs, changing doses... We'll see. But earlier she said "I'd rather sleep all day than get angry."

I don't blame you for being less than enthusiastic about the holiday. It's just making a difficult job harder. But maybe a change of scene will help.

@lougle I can’t remember when your DD started on it? The tiredness in the mornings did wear off for my Dd after a week but not sure she would deal with a dose in the morning as she does tend to go to bed v easily after having all her 5mg in eve. I guess Sleep is very healing as long as she doesn’t miss out on eating!
The problem with hols is the exercise as well as the food. Also my in laws are not v good with the whole situ. Luckily we won’t be able to eat out with them or indeed see them indoors so that rules out difficult restaurant convos but my mum in law is obsessed with looks etc and has always talked about my DDs outfits and hair and looks etc despite my DD not being remotely interested in such things. They what’s app and some of my mum in laws comments make me squirm. I think she thinks she is helping when she compliments my DD on her looks but it doesn’t help at all....so a week of it gulp.... she also thinks my DDs behaviour is ‘naughty’

@Lottsbiffandsmudge I don't know what to suggest re. The holiday. Any ability to develop flu? Gastroenteritis?

Only started olanzapine on Tuesday. Immediate reaction after one dose.