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

Sotired it seems to be very much a postcode lottery in terms of what support you get 😕

My dd didn't lose a huge amount of weight and I think that may have been as we were seen fairly quickly. My dd was already under a Camhs team as part of her ASD assessments and I raised concerns with them mid summer last year. My dd had massively upped the exercise (online workouts/bloody Joe Wicks/daily runs etc) and at the same time started to cut down on snacks and then breakfast and then lunch etc etc.

From raising concerns to being seen I think was around 3 weeks, dd had to have bloods and an ecg before they'd see her.

At the first appointment they went through all our concerns and basically said dd had to follow the 3 meals and 3 snacks a day plan plus stop all exercise other than one walk a day.

Dd weighed 50kgs then at 5ft 6in and we are now hovering around 53kgs (and has grown an inch) so not a massive gain really 😕

If I can't make any headway I think meds will be the next step which I'm not keen on but we're still getting no where with milk/snacks and actually she's shaving off what she can from breakfast and lunch 😫

Have you spoken to the ED team re an alternative to the fortijuice Lougle? There might just be something in it that your dd can't stomach.

You have been doing the right things, all we can do is follow the advice we're given.

@Girliefriendlikespuppies meds helped my DD a lot. DH was not keen. Tbh olanzapine was a game changer for us, better sleep and a def reduction in ED voice.

@Girliefriendlikespuppies

Have you spoken to the ED team re an alternative to the fortijuice Lougle? There might just be something in it that your dd can't stomach.

You have been doing the right things, all we can do is follow the advice we're given.

I left a message for the dietician team. I don't even know who her dietician now is, because the one we had doesn't deal with eating disorders, so she said she'd hand over to another one. We don't have the EDT established with DD1 yet. She saw a nurse from the team in hospital, and she went back to hospital after discharge to meet the psychiatrist from the EDT, who prescribed the fluoxetine. We see her again on Thursday, so I guess that's when I'll raise it.

I think it's constipation again. Last week when she was sick, she'd been on movicol and senna for several days and (TMI) had diarrhoea with the force of being sick. Then she didn't want to take the meds and I stupidly agreed, on the basis that she now had diarrhoea. But she's eating a very low fibre diet, really, because she's not tolerating the volume of the foods that have good fibre content. Plus she vomited the last couple of doses of movicol I did try to get into her.

Tonight she left ¼ of her dinner, refused pudding, then couldn't eat evening snack despite starting it. 1325 calories today.

She did use the toilet though, and that showed the problem. I've managed to get 10 ml senna and 2 movicol sachets into her.

It's not much fun right now.

We've just had a really difficult conversation, dd admitted to really struggling, feeling suicidal at times and said the ED voice screams at her. Weird thing is though she still defends it and says he 'helps her' ☹️

We talked about meds but she's still not keen but I wonder if that's because of this unhealthy belief that the ED voice is her friend/trying to help her. It's like she's is an abusive relationship tbh so she's scared of losing it.

She said she feels like she's in a daze most of the time.

It's such a weird illness and literally feels like dd has a split personality and I'm never entirely sure which one I'm talking to. She asked me right at the end of the conversation would I rather be the most feared person in the world or the ugliest?

I said ugliest as what is ugly anyway? What's ugly to one person is beautiful to another.

My heart breaks for my beautiful girl 😢

@Girliefriendlikespuppies can you convince your DD to have a time-limited trial of the meds? She might feel more in control if she thinks that there is a point where she could say 'this isn't working for me', which would give the meds some time to work.

[Edited by MNHQ for privacy]

@Girliefriendlikespuppies my DD was not keen either. In the end we made the decision for her and she has complied. She now says the voice is still there but easier to ignore if that makes sense.... we started with a time limited trial of 3 weeks for olanzapine as the effects are usually quite quick.
I think anti depressants take longer to work?

Yes I think I will talk to her psychiatrist at the next appointment about olanzipine, sounds like that might be more useful/appropriate than antidepressants anyway. What dose did your dd start on lots? I think it would be me that made the decision but it feels like such a massive responsibility 😕

I had a terrible nights sleep, in the end around 1am I got up to make some chamomile tea and eventually fell asleep at about 2am. Then the dog decided he needed a poo at 4am 😫

Dd currently downstairs having her weekly zoom cbt, hope it helps....

DD is not particularly down on herself or self-harming, but the therapist mentioned drugs to us as a way of dealing with anxiety (she's not particularly anxious generally, just around eating). I think it's part of the treatment now and I suspect they've got good results with it otherwise it wouldn't be. It just sounds scary and serious.

A friend just suggested (jokingly) weed as that what gets her appetite up. She says she wouldn't eat otherwise. We're not quite there yet.

@Girliefriendlikespuppies DD started on 2.5mg a day now on 5mg. Olanzpine is an anti psychotic but my psychiatrist said it is used in v small doses for EDs as the voice is a kind of psychosis.
My brother takes a much bigger dose I think 30mg a day to manage his psychotic chronic mental illness and has been stable on it for nearly 15 years. He says it is the best anti psychotic he has tried (and he has tried the lot!)....
I try to think of the meds as if she had a physical illness...if a doctor said to me she needed a drug to alleviate symptoms of a very harmful physical illness I would not hesitate! As a society (and I include the medical profession in this) we seem much more loath to try things that might really help...

Hi all. Have been following you all.It’s been a bit shitty. Doesn’t look like dd will be going back to school. I’m so upset. We’ve got clinic next Friday and she’s not following the food plan. Just don’t what to do, it’s gcse year. All her friends will be returning and excited to see each other. Her MH is going to plummet.

What are the side effects from okanzapine?

There doesn’t seem to be a proper plan. Feels like we’re supposed to tell CAMHs what to do.

Scr1bblyGum - so sorry you're having a tough time. How much off the plan is she..?

have a chat with her school - does she have enough work 'in the bank' that they could give her gcse grades? What does she want to do next in terms of education/work. Failing that, retaking a year (or in our case two) isn't the end of the world. DD is conscious that her friends are all discussing University and thats not possible for her this year, but it will be. Her school said to us that in the long term, those that took the time out to get well fared better (academically) than those who tried to soldier on but just weren't well enough... sending

@Scr1bblyGum you really need some proper guidance, don't you? You need confidence in the plan.

We're having our first meeting at the EDT clinic tomorrow. I'm going to ask about school there. DD1's calories are going slowly down, not up. Today was a real struggle but I have got there. Just so difficult though.

Well today she’s had a piece of toast, few sips of juice, a pitta with tuna in, 1 yogurt, a bite of a bar and a piece of baked cod. Should be 3 x meals, 2 puddings and 3 snacks. May have half of evening snack.

So way off. 😩

It sounds like she's trying It's not a fair illness.

We had a bumpy food day. ⅔ of breakfast refused, but a yogurt eaten to substitute. Cheese toastie for lunch. Tried to refuse half, but decided Fortijuice was worse than the remaining half. Dinner eaten with a bit of difficulty, but got there. Snacks moaned about but eaten.

Hi, I hope nobody will mind me posting here, but I have just discovered this thread while randomly browsing while waiting for my son to fall asleep.

I just wanted to say what an inspiration you all are for being so supportive and understanding of your daughters.

I had severe anorexia as a teenager, back in the days when there weren’t really specialist community teams and my parents where’s given any advice on how to help me. My parents were basically left to plead with me until I got so ill I got admitted to hospital/ and EDU, and we spent several years on that carousel.

My main reason for posting, though, was that although I’ve not read the whole thread, I have just seen the discussion about education. I wanted to reassure you all that missing some school needn’t be detrimental in terms of educational options. I missed my GCSEs and took them a year late while in hospital. I then dropped out of sixth form three times, before fully focusing on recovery. At the age of 23, I returned to college to take an access course, secured a place as a good university and graduated with a first class degree. I went on to get a distinction in my Masters and got a good job from there. I am now married, expecting my third child, and few people in my day-to-day life even know that I was once a skeletal, revolving door patient.

My point, I suppose, is that while the days must be so hard for you all, and for your daughters, even from the darkest depths, recovery is possible, and the things that are missed out on now, can often be recaptured in the future.

You are all amazing parents, and your teenagers are all very lucky to have you behind them. I really hope that you and your families find yourself in brighter times very soon.

Hi Scribbly does your dd want to go back to school? I'm using the threat of not sending dd back as major leverage in getting dd to eat more. Not sure it's going to work but she did manage half a brunch bar today which is the most she's had snack wise in 2 months!!

Lougle you're doing so well, when's your dds next weight check?

Equimum thankyou for sharing your story, it does help to hear that it is possible to make a full recovery as it feels impossible some days 😕

Do you know was it was that finally made you start your recovery?

@Equimum thanks so much for stopping by and sharing your wonderful story. I mentioned up thread that hearing from people who have recovered (or are in recovery) from this dreadful illness is so helpful to me - in the depths of the not eating, the shouting, the screaming, the self harm, the distress (mine and her's) it is a real life buoy of a thought to hold onto that people can come out the other side, happy, intact and in possession of a bright future.

Thanks from me particularly on the education front as DD has stopped year 13, won't have her a-level grades this year, or have a university place and will re-do all of sixth form again, it does help to be reassured that it isn't a major barrier. Out of interest equimum how did it impact on making new friends - DD is worried about this as she'll be 18 and joining a year group of 16 year olds in lower sixth - none of whom she particularly knows that well...

And she's refused the yoghurt I had counted into her day's calories. "I don't have to and you can't make me." Now 1760 Vs 2000 target.

Next weigh in tomorrow @Girliefriendlikespuppies. Last Tuesday she had lost 700g and the consultant wanted to readmit her. This week so far her average calories are 1697 Vs 1838 last week. I'm trying so hard but she's getting more resistant.

@Equimum how rude of me. Thank you for your encouraging story.

Lougle has your CAMHS offered any meal support? Or would it not be a good fit for your DD? My DD responds better to medical staff than to us in terms of eating. We're using meal support strategically - the hardest meals or to introduce new foods. If you thought it may be an option, perhaps push at next opportunity for at least a couple of weeks of support and see how it goes?

@myrtleWilson I don't know, tbh. I haven't officially met the EDT yet. I've met the psychiatrist, but not the nurses or dietician. I'll see what they say tomorrow.

I feel bad whinging - she's getting far more calories now than she was. But she's so low in weight anyway, that I feel like I don't have any room for her to drop.

DD1 swings from saying she never wants to go back to school, to saying 'how about i go in a wheelchair?'. I don't know whether that's something to consider. She's in bed most of the day at home (fully dressed).

She really wants to go back. It will be catastrophic if she doesn’t.

@Scr1bblyGum

She really wants to go back. It will be catastrophic if she doesn’t.

Can you phone CAMHS and find out what the minimum she would have to do to return is? Would she tolerate Fortisip/juice, Calogen Extra shots or anything like that just to get her over the line?