Teen Eating Disorders support thread 3

[Girliefriendlikespuppies]

Thought I better get a new thread going!

Please come and join us if your teen is struggling with an Eating Disorder. We are a kind, supportive bunch of parents looking to support each other through the dark days of caring for a teen with an ED.

@NCTDN - I think Lougle has some sort of app to work out WFH but I just do it myself by going onto the NHS BMI calculator - I put in dd's height and dob and just kept adding kilos until I got a result of the 50th centile. The bang-on-average for her height and age is essentially 100% WFH. In her case it's 54.3kg - so I just divide her weight by that and times by 100 to get her current wfh percentage.

@lougle and @Lottsbiffandsmudge have been phenomenally good at getting the weight onto their daughters and I would take encouragement from that. However, please don't get disheartened if progress is slower. In our case for example - dd went from 75% to 80% in about six weeks (from early Jan to late Feb). And has been stuck at 80% ever since...

Our therapist has never mentioned 100% WFH as a goal - they've said 85-90%. At the risk of sounding like I'm brainwashed by diet culture myself, I do think it would be very hard for DD to be an average weight given that in her whole life she's never had a BMI of higher than the 10th centile (she's always tracked on the 75th centile for height and 25th for weight).

But maybe she needs to weigh more to get her head back.

Heart rate outs a little like but she's very fit (or was) so no major concern. On paediatric ward so at least she can have a visitor unlike the adult wards.

@Valleyofthedollymix yes dd will never have been anywhere near 50th centile in her life.

Just reread message. I mean heart rate is a little low.

@NCTDN if you want to PM me with height, weight and date of birth, I can work that out for you. But, as @Valleyofthedollymix has said the BMI calculator is pretty good.

As @Valleyofthedollymix says, 100% WFH is only 50% - in other words 'average'. If your DD always tracked above or below, you might need to adjust.

Wfh is a blunt tool and I agree doesnt take into account historic individualised trends.
All I would say is that my DDs mental state has only improved once we got to c 97% and my DD has always been slender (started at 50% H and 25% W as a new born and moved to 9% W by 1 year).
So she is heavier than perhaps she might be naturally although as a teenager fat levels do need to increase and my KW said not to try to get her back to her 11 year old shape as this would not necc by her shape as a teen...
There is a lot to be said for using state of mind as a guide rather than percentages. I think we are in the right range now but I wouldn't hesitate to go higher if her mental state dipped.

Interestingly she has coped with her trials at Arsenal better than I thought she would
Certainly better than she would ha e pre pandemic. So I wonder if she has always been a little underweight even whe she was eating freely

So will they know if she's always been like on percentile charts? Think dd has always been the second percentile for both height and weight.

I really appreciate all this support- thank you.

@NCTDN I don’t know whether different trusts/clinics do it differently but for DD they just asked us at her initial assessment what her weight was prior to the restricting and the weight loss and then they just told me what her normal wfh should be based on that, which is around 95%. She is currently at 83%.

@Lottsbiffandsmudge I am glad that DD is coping with her trials well! I was so glad to read your post mentioning using 'state of mind' as a guide rather than percentages. Here we have moved up to about 80%WFH but I've seen no improvement in mental state yet but I really hope as we move closer to 90/100% that my old DD returns. The version of DD currently is so difficult, negative and generally unpleasant.

@NCTDN welcome onboard this rollercoaster..... it's not a nice ride, unfortunately. You've mentioned your DD was very sporty and slight anyway, the same as my DD, I am still kicking myself for not seeing that she was struggling for so long. It's a terrible illness and the patients become so sneaky.

We had a week stay in hospital and that really was the trigger point to get my DD eating. We've moved from 73% wfh to 80% wfh in 6 weeks and I hope to keep the pace up. I can't wait to have my DD back and hopefully also her growth spurt (she's 13 and her growth spurt stopped due to her weight). My DD didn't visibly 'lose' a lot of weight she stopped eating (only had 600 calories a day) and stopped growing........ as she had no fat to lose it all happened so quickly. She ended up about 10KG below where she should be

If you give the team the data from your baby book and any other weight and height measurements you've done over time (or in her GP's file) they can get a good estimate of where she should be.
We're aiming for 90%wfh but as Lots said if the mental aspect doesn't improve we will go higher.

@SoTiredNeedHoliday at 80% my DD was still thick in the AN thoughts. It took until c 90% to see some improvements and then 95% to really see a big difference. The tendrils of her exercise compulsion are still enmeshed in her brain and I have to be really vigilant but my DD is back! Laughing, singing, playing the piano, joining in etc etc. There is a lot of work to do on food too but now she is happy to try.
She has even agreed to therapy with her KW over the summer holidays which I will be doing with her around perfectionism.
Until recently she has been adamant that she would not engage.
Then one day she said ‘how am I ever going to get my head better’ and I said she needed to take up the offers being made to her and put the work in to that. And at the next psychiatrist review she agreed to it! I nearly fainted!

At 80% I can safely say that DD still very much in the thick of AN thoughts.

I managed to find the My Fitness Pal account that she started when she began to lose weight and she lost 8kg in all - at her most she was 4.6kg over what she is now, having put on quite a bit of weight very quickly during the first lockdown (it was seeing a photo of herself, I think, that triggered the dieting/restricting).

So I'm thinking, she needs to be at least that weight, probably more to account for growth. Which is 90% WFH and essentially what we've been told, but not to fixate on particular numbers. I spend too much time looking at her list of dates and weights, running them through the calculator etc. ARggh. I hate that her ED has made me obsess over weight, fat and calories.

@SoTiredNeedHoliday that is just like dd. She didn't appear to visibly lose much weight at all. I've no idea what she weighed pre COVID though - just know that size 6 clothes were never too small. I'll root out her red book, but she's never had any need to be weighed before.

We're really hoping a weeks stay is all she needs, though I don't underestimate how hard it will be at home. I'm getting a sick note on Monday for work.
6 weeks to 80% is reassuring and sounds feasible.

Welcome @NCTDN - this is a great support thread. Please do make sure you have some home based ED support in place for when you get discharged. We didn't at first and it wasn't great.

You mentioned long journeys and positive stories - I think I can tick both boxes! I've been on here since the first of these threads following my DD's admission to hospital last summer (although she'd had periods of intermittent disordered eating prior to that). And now, we're three months into recovery - she's fighting like hell to get her life back, is off plan and eating more widely and is able to eat with a couple of trusted friends. Discharged from both CAMHS and adults now too. So there is light at the end of the tunnel even if it seems very far away at times.

lotts how was your DH today?

sotired - the cognition does come back I promise. DD is now reading again, is applying for volunteering/jobs, having conversations covering world affairs and laughing her head off at stuff.

All that said, I did have more than a pang of sadness for her. Her friends are all finishing 6th form, having leavers balls, planning their next stage in life and moving away. I think the realisation of this happening is becoming a bit more real for DD and I do feel for her. Obviously we had no choice and in the grand scheme of things this will be a blip but is another reason (and there are many) why I hate EDs

I have to be honest and say that DD1 went backwards after discharge and I got to the point of asking for a NG tube because she was gaining so little. The paeds consultant had agreed in principle, but I agreed to see the psychiatrist in clinic to discuss it further. She asked to try just one more thing - olanzapine. It worked instantly for DD1.

@myrtleWilson had she resat about year at school?

I agree lougle that discharge can be a tricky moment for all sorts of reasons..

nctdn she's never really done any time at school in year 13 and initially we planned for her to re-do that year but timetabling and her health has meant she's starting in year 12 again. On the upside it means as she has already done the content in year 12 if she has any wobbles it won't be too bad (she says, hopefully not jinxing anything) the downside is she's integrating with a year group she doesn't know who are 2 years younger than her... The idea that she'll be the oldest in her entire school for two years is a bit freaky!!

Anyone else feeling like this is never going to end today? 😫

I went out last night with my two best friends, had a lovely time. We stayed over at my mums for the first time since Christmas, dd was in a weird mood this morning and I just have a horrible feeling things are not quite right again.

She was very cagey over breakfast and I caught her spitting out some milk 🙄

I honestly don't think I can go through this again if she's about to restrict/hide food again. We're hovering around 96% wfh and it feels so precarious.

It's so shit.

@Girliefriendlikespuppies I hope you can turn DD around quickly. We had a rubbish start to the day too, DD wanted to stay in her room whimpering and feeling fat and ugly. Took over an hour to get her out of the house and after about 45 minutes out she started to feel a bit better. So drained!

Oh no Girlfriend. Do you think it could just be the change of scenery perhaps being at your Mum’s that threw DD a little off kilter?

We were having quite a good day. But then it all kicked off because I told DD that she would need to have her snack when she gets home from her friends house this evening. She said couldn’t she just go without this one time as she doesn’t like eating late at night. I said no sorry she has to eat all her meals and so she can either have it before or after. Then she said that she won’t go to her friends then. Fine by me. 🤷‍♀️

We are struggling to see much weight gain to be honest. DD has put on 200g the last week and that’s with upping her daily intake by about 300 to 400 calories.

@Girliefriendlikespuppies so sorry, it's all rubbish.

DD1 was 160 calories short of her 2300 calories target tonight (down from 3000), so I gave her a biscuit and half a small glass of milk. She's almost vomited and I've ended up letting her spit it out in the toilet. I hate this illness.

Good morning
Just checking in. How is everyone today? Im sorry to hear about the struggles everyone I'd having.
It's been a chaotic week here, started in A&E , but I think the setraline has kicked in. We have gone from hunger strike to meal plan compliance the next day. It's prob not over 2000 cal which needs addressing fast but it's 3+3 so much much better. And I slept for 9 hours last night!
It does feel relentless. I'm targeting our august holiday as a point at which I hope we have some sort of health returning. That's if we are allowed to go!

Pretty crap. Dd only ate 2 pieces of toast and an apple yesterday. Disappeared for 2 hours. Had a pretty frank discussion with her after deciding the dolphin can do one.

Gearing myself for another week of vileness from dd and dismissive patronising rhetoric from CAMHs. Fun times!😩

For you that say your children are fighting how much they should be eating, were they in hospital at all? Dd is being so compliant in there and I'm hoping the fear of having to go back in will keep her eating once home.