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...

And thanks @exLtEveDallas and others for the useful information on stats. Much more than I discovered for myself online.

DD has agreed to try a ‘couple of oven chips’ tonight

I’ll believe it when I see it, but I think that if she can get them on her plate that she will eat them.

Lots i agree it's positive your dd told you re the running, I definitely think the min you start to relax the ED ramps it all up again 😕

Those Obs sound okay to me valley, for comparison dd had a pulse of around 40 when she was first seen by Camhs at her lightest weight. Her bp seems to hover around 100/60, last Tuesday she had a postural drop so her bp dropped to 80/50 when she stood up. I think that might have been to do with the timing of the weigh in though as it was at lunchtime and dd hadn't eaten yet and not drunk much either.

Myrtle that's amazing re increasing the range of food, I'm really pleased for you. That's sad its coincided with low mood and self harm though.

I'm finding that fb group great as well, there's a yummy looking cheese cake recipe on there that I'm going to try and make!! We've had a good couple of days, dds mood has improved and she's eaten fairly well. Dinner tonight was half a cheese pizza, fries and avocado which she ate most of and I made an Oreo milkshake for pudding (6 Oreo biscuits, 2 big scoops of ice cream, double cream and ff milk) made up to around 350mls. She drank all of it!! I think between dinner and pudding that's about 1400 calories?

We've started talking about dds 15th bday which is in 10 days, she has said she definitely doesn't want a cake but might like a cupcake so will have a think about that.

My god @Girliefriendlikespuppies I'm torn between revulsion and admiration at your milkshake recipe! I am impressed you managed to get her to drink it.

Thank you all for the enlightenment about blood pressure and heart rates. I feel like a bit of an idiot now as it seems obvious that it's low heart rate that would be an issue but I just fell into assuming that a high one would be an issue because it normally is, forgetting of course that every day is Opposite Day with ED. I now feel like one of those annoying people who posts on the education board 'my child got 120 in their SATs, is this good?'.

I think DD is a bit of medical mystery because her weight and BMI are so low (41kg, BMI 14, weight for height 76%) but so far she has no other ill effects and eats quite a lot. It's in a way fortuitous, oddly, because it means that the GP and ED referral has been pretty quick in the lockdown circumstances when I suspect that there are girls who weigh more but for whom it's worse. Still, not complacent as she has no periods and very clearly is far too thin with disordered thinking.

Valley aww don't feel like that, a fast heart rate is not great either tbh as either way the heart is having to work harder than it should have to. It definitely seems to vary in terms of how much weight someone has to lose for it to become as issue, my dd lost around 6kgs, went down to 50kgs at her lightest and was seriously ill (almost hospitalised with the low heart rate.)

She now bobs along at around 52kgs and although that is still too low her periods have returned, she has more energy and her mood is slightly better. I think to look at her most people would think she is a normal size for a 14/15 yo tbh.

Does your dd like smoothies or milkshakes? I have found them to be the easiest way to get a lot of calories in, I found out the other day that mango is pretty calorific and dd loves mango which is brilliant!!

We're plodding along, still not tackled the lack of snacks but am trying to get as much in to breakfast, lunch and dinner as possible. Next week we have a trio of appointments, one a day from Wednesday!! Am hoping by the end of that we might have a plan in place in getting dd to eat more. I am also wondering if I should be restricting dds dog walks she walks him for about an hour a day which is probably too long given how much she is eating.

DD seems to think that smoothies and milkshakes are more meal replacements than snacks, sadly, but I do give them to her occasionally. Didn't know that about mango - she loves it so that'll become the regular breakfast fruit option.

The paediatrician told us to restrict DD's walks to 15 minutes a day. At weekends she's been coming out with us all and we do at least 45 minutes. In theory, I know I should compensate with extra snacks but I just can't face that. I think overall, an extra 30 minutes walk on two days a week won't be a biggie.

It does feel so counterintuitive to be restricting something as mentally and physically healthy as walking the dog but it's old ED Opposite Day again.

DD won’t eat shakes and smoothies because they are a ‘waste of calories’ - she’s a volume eater so everything she eats has to be ‘worth it’

According to our scales, DD has put on another 800g, though possibly wearing slightly heavier clothes than last time (won't go and weigh them though I've done that before!). I'm so relieved. Still a long way/weigh to even the very lowest healthy weight let alone getting her periods back but I'm pleased that if we follow the eating plan it seems to work.

Still got disordered thinking though. She's convinced that the eating plan is a 'maximum' so she can't go over the 200 cal snack allowance. When I suggested I email the dietician to get her to confirm that it's a minimum, she said 'oh no, she'll think I'm greedy!'. We did manage to have a joke about the World's Worst Eating Disorder Dietician and what she'd be like.

PS Hope everyone's weekends were OK. I'm finding them the hardest as there's less routine and more DH - not that I don't love him and he's not a great support, but it's that thing that you only lose your children when you're both together as you're not in complete charge.

That's a great gain valley well done!! Also good you could have a joke, sometimes you have to laugh at the ED because it is so ridiculous!! Over Christmas dd made a joke about ED being contagious and I laughed and said 'I bloody hope not, I want to enjoy me Christmas dinner' 😆 it made dd laugh.

Yeah wends are harder here as well and I don't really understand why but dd always seems sadder some how 😕 we went on quite a long dog walk ystd and I've been beating myself up about it ever since 😕 I'm sure it's too much exercise on what she's currently eating...

I still feel like we're not getting anywhere tbh.

How's everyone else doing??

Hi, I'm still reading but can't contribute much of worth. I thought DD1 had been doing ok with eating. She's eating 3 meals and snacks, but her weight is back down to 37.1kg. Still no interest from paediatrics. She sees the dietician on the 10th.

Sorry to hear that @Lougle. I can't remember where in the process you are. Has she had all her bloods and heart stuff done? I've only our experience to go on but we were initially given an appointment six weeks from the GP referral but they moved it to two weeks when they saw her weight (then 40kg) and then when we saw the paediatrician, they moved the therapist forward to (this Wednesday). In other words, despite being overwhelmed with referrals, they went into semi blue light mode given her weight.

@Girliefriendlikespuppies you cannot feel bad for going for a walk. Of course minimising calories out and maximising calories in is the general priority, but there are benefits to a walk, especially at the moment.

God Lougle that’s low. Are her stats ok? DDs lowest was 39 but her stats were terrible, that led to the hosp admission and the immediate CAMHS intervention - I think the hospitalisation was ‘lucky’ for us because it meant treatment.

We joke about the ED as well - when DD first came out of hosp we watched ‘Dr Strange’ together and there is a scene where he is in hosp, on an operating table and the camera pans to the monitor showing his heart rate below 40. The nurse says something like “we are losing him” ... DD and I just looked at each other and both got the giggles because if her father had realised the significance he would have gone batshit. We had to pretend we were laughing at something else.

I don't think she's feeling that well in general. She says she's dizzy when she stands up. I've just checked her heart rate and it's 94 lying and went up to 144 standing, which I know won't feel good.

Lougle I think you need to go back with her to your G.P or even just rock up at A&E with her. She's so underweight bless her, I would say she needs urgent obs, ecg and bloods doing. There's a score system called marsipan which Drs should use to assess very under weight patients https://www.stgeorges.nhs.uk/wp-content/uploads/2018/03/MARSIPAN-.pdf

Still in hospital. I think I’m putting on the weight dd should be. Sitting in the parents room waiting for her to eat is taking it’s toll. Currently working my way through a bag of Percy Pigs which made me sad because she used to love them.

I phoned the GP and she has sent us in to A&E. Obs & ECG done. Waiting for Dr.

Good luck Lougle, I hope you get seen soon x

Good luck Lougle hopefully someone there will start to take it seriously now.

Terrible evening here, I saw some marks on dds arms and when I asked her about them got told to fuck off, she's currently shut up in her bedroom again doing god knows what. I'm seriously thinking I might have to take the door off it's hinges.

Still can't get snacks or milk into her, have been crying most of the evening. Also found some very inappropriate stuff on tiktok so that's got to go 😓

@Scr1bblyGum I hope you see progress soon. I'm sure your Percy pigs will help you cope - enjoy them. Hopefully one day soon your DD might, too.

@Girliefriendlikespuppies that's so difficult. I hope she's settled.

We've been admitted so they can process DD1's bloods and come up with a plan tomorrow. The ward is not too busy but I suspect sleep will be in short supply. At least I've got a camp bed.

Lougle you’re in the right place. As horrible as hospital is the one positive is they are physically being cared for whilst in there and you can relax a little bit. Worry obviously just the same. Hoping they come up with a good plan.

Oh Girlie I feel for you. Sending you virtual hugs. It’s so gruelling on every level isn’t it.

Lougle Hope you got some sleep? I hope you get some answers and help now as well.

I've made a decision to try and get through this week at work and then go off sick. It means I can sort a few things out at work and prepare my manager (who hopefully will understand.) It's just too hard trying to care for dd and work, she needs me more at the moment.

We've got the psychiatrist appointment tomorrow so will talk it through with her as well.

Hi everyone. Sounds like a tough time all round. Good vibes to you all. Yest we had DDs bloods taken and an ECG the nurse doing the ECG (at our GP) insisted on weighing her....bloody nightmare as she did it fully clothed and with trainers on which precipitated a major melt down yest eve coinciding with her brother deciding 9pm (her bedtime) was a good time to lift weights below her bedroom window....
so she has not slept well and I had to do my first enforcement of my ‘no exercising alone’ rule that we agreed in a rational period on Sat during the confession about her secret running and using her friend as a way to sneak out to run. It did not go well. But I stuck to my guns.
Weight today up 150g which I feel crushed about as I have been sneaking in extra calories in her smoothie and at dinner. It looked like at drs yest she had gained over 2kg which caused the massive meltdown and was hoping for at least .5kg after taking clothes etc off the weight....
zoom CAMHS later I have prepped the dietician on our major issues from this week. Secret exercise, others exercising, losing her 6 pack.
I am learning more and more about dealing with the ED and wish I had known what I know now when I started as I would not have allowed her any leeway to go out alone...now it is harder as I am pulling it back.

Gosh I posted before I saw all the posts from this morning. @Lougle hope the night went as well as possible and things start to move for you now.
@Girliefriendlikespuppies I am supposed to be working now instead I am sat outside DDs bedroom watching her do school so she can’t secretly exercise. It’s almost impossible to work reliably so your plan sounds good

Thanks everyone, so lovely to have some kind faces.

I think you're making a good decision @Girliefriendlikespuppies. It will give you a chance to take stock and concentrate on what's important.

@Lottsbiffandsmudge secret exercise must be tough to manage.

Not masses of sleep. Got to the ward at 11pm. Next bed was really noisy, but nice people. DD1 up at 2am for the loo, then woke me at 7am to say she wanted the TV.

Madness this morning, because DD3 told everyone that she'd seen DD1 in bed, so DH thought we were home from hospital. DD2 (13, ASD) has had a bit of a meltdown. DH has now gone home.

CAMHS phoned the ward. They had been asked to do a suicide assessment because DD1 told them she just wanted to die last night. They've spoken to me and now think that they want physical stuff dealt with first. DD1 keeps signing 'home'.