Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

Amazing 👏

this shows maybe 1/4 of March as we walked - such an inspirational day

https://twitter.com/mattlcapon/status/1659868343707344896?s=42&t=DddtrQy-YSi-4WHUlt1qjg

Really great day! Fab turnout and some really inspirational stories. Some of my favourite quotes from speakers in recovery: "You do get better. You have a life. You feel like you'll never get through this dark tunnel, bit you will.", "I'm happy and I'm here now!", "I've been in recovery for half my life!", "You will get better. You are loved. And you will find your people."

And I'm just forwarding #DumpTheScales' request to write to your MP to call on them to ask the Government to:

1. Adequately find services to meet demand. There is an estimated shortfall of £280 million.
2. Commit to a stand alone strategy for eating disorders.
3. Fund research into eating disorders.

thank you Myrtle for going to the March. I only realised it was on when I heard someone talking in R4 about it and some of the things she (cannot remember her name) talked about were utterly shocking and heart breaking (such as palliative care for some of those severely affected who haven't responded to the therapy offered).

Things with DD were very tricky yesterday morning to the point she was moved into a single room and preps for the NG tube and restraining were made but she have in and ate all her food in her mealplan yesterday and today. They made some minor concessions and the plan will be stepped up on Monday.

She is eating strictly to the mealplan. E.g. if it says 200ml of milk and the bottle contains (we have measurements on the outside of her bottle) shows it contains 210ml, then she will decant 10 ml into a cup and jug that out. But she will have the rest without fuzz. It almost seems that the mealplan gave her leverage against her anorexia / permission to eat what's on the plan but anorexia won't allow her to eat anything else above the plan. Not sure this makes sense.

@Curlyhairedassasin I hear ya. I have been watching my DD weigh ketchup and almond butter for many months. We are, however, now off the meal plan and free pouring.... With mixed success so far, but it does feel nicer, I have to say! Hang on in there. I think it takes so much time for their brains to catch up.

Just popping in to say hi. @Curlyhairedassasin hang in there. With DD1 she was 37.3kg on admission and it seemed impossible that she would gain weight, but once they started olanzapine it was like a flick of a switch and she started eating again. She got weight restored (52.5kg), then they withdrew the olanzapine and we went downhill. It took a long time for her psychiatrist to reconsider it, and it's taken a year to get back to a healthy weight again, helped this time by Aripiprazole. She's finally back in the safe zone. Sertraline, fluoxetine and respiridone weren't effective at all.

DD1 has been under CAMHS for almost 2½ years now and no sign of getting better in terms of her mental health, but she is physically better. I think food will always be the first thing to go when she's distressed.

@Lougle, oh that sounds hard at your end. Really sorry to read that things are not better on the MH front after such a long time.

out of curiosity - is olanzapine only a short term medication? I assumed, provided, it works, we will stay on it for a while but reading your post, I now wonder now.

Hi curly that behaviour sounds perfectly standard. And 'having permission' to eat or 'i had to eat the drs/ mum/ the plan said so' is how my DD negotiated with her ED.
My dd was on olanzpine for 8 months and only stopped once in proper recovery.her psychiatrist wasn't keen to take her off quickly as she said we wouldn't know how much good it was doing until she came off and once she did it might be too late to realise IYSWIM
it honestly takes ages for their brains to repair. The mental recovery from AN is always last as the body de-prioritises the brain as non essential. She'll repair her other organs and stores of reserves first...
That's why a lot of people go by state not weight. Which I do agree with but what I would say is that even when at a heavier weight than 'needed' it still took my DD months at that weight to improve little by little. there were def improvements in her mood and eating before then just not free, independent and normal 13 year old eating

Lotts that's really helpful. I am on an AN crash course now. At least it feels like that - you all provide so much insight. Thanks for taking time to explain.

It's difficult with DH a bit again. He just doesn't understand the MH aspect and how the brain needs to heal too. I think he will think once (if) she puts weight on again we are good. I find dealing with him almost as exhausting as dealing with the AN right now. He thinks she just needs to eat. aargh 🤯

Tbf he is kind of right. At the moment and for months to come she does just need to eat! And put more weight on than she has lost.
And then hold at that weight (and increase further as she grows)
But that will take months of concerted effort from you all and you will have set backs. There are always set backs.
Gaining weight takes a long time. Right now they are trying to stop the losses and stabilise her.
Then the process of gaining begins. Its a bit like turning an oil tanker round. Vv slow!
That was the hardest thing for my DH. The time it takes. He wanted her 'cured' quickly. Sadly it doesn't work like that. You have to strap in for the long haul.
It's possible that when she has gone through this process she won't need any MH input. My DD didn't need any. I learnt to manage her anxieties better and not make them worse (AN caring taught me that!) But she never had therapy.
Young patients esp can recover like this.
However equally she may need MH support.
But there's no point doing any of that when she is down this rabbit hole of extreme AN cognitions.. That's all for later, for now food and nutrition going in is key.
There are brain scans of an AN sufferer on line that you could show him. It's quite scary tho, be warned...
How are you doing? How are you managing your other DD with all the visiting etc. Your situation is v tough and I really feel for you.

lotts we are managing. DH and I take turns though most of it is on me. During the week I am here after DD1 has been collected by transport, then I leave to collected her. Wait for DH and down again. We have someone here from the community ED team to support her a bit throughout the day too. Supper is around 8pm so my days here are long and I am only finally back home round 9 (but appreciate hugely I don't have to stay 24/7).

DD1 is now sleeping in my bed and DH in hers as she gets really clingy. I manage to some extend to do my work remotely from here but it's very hard. My boss was off last week so need to have a chat on Monday/Tuesday with management. Not sure what I will do if they demand that I come back for a couple of days a week. I have to be here for meal support 6x a day between 9 am and 8 pm. There isn't really any way for me not to be with her.

How do others manage longer hospital stays?

Also, how do you deal with schooling? DD only has been off school for a week and the attendance lady has already rang 3 times. I told her that we are focussing right now on Dd's physical recovery and thar that things are very stressful and told her (nicely) to leave us alone for a couple of weeks. The last call was on Friday. She said she would ring me back on Monday again for an update I just want to scream. She asked about the 'hospital school'. Is that even a thing? We are on a tiny paed ward in a general hospital.

Do your kids some sort only learning on the computer?

I'd ask the school not to contact you at all, your dd is absolutely not well enough for any type of schooling. Ask the ED team to speak directly to the school and to put it in writing that they are not to contact you. She could be off months so you definitely do not want them ringing you three times a week!

I think with work you need to be signed off with stress, will you get sick pay? It's not sustainable to keep doing what you're doing imo.

I agree with everything lots is saying re the brain recovery taking ages. My dd is three years in and I'd say the brain is still catching up! She's been weight restored a good 18 months.

Well done on the March ladies, sounds brilliant and fab for highlighting the shocking state of the ED services.

Thanks girlie, I think the ED real wrote to school but I will ask them on Monday to ring them.

I cannot really afford sick pay and we are a small team. Summer is coming and everyone has holidays planned from June through to August. We always needs a certain amount of staff to cover. I couldn't possibly ruin their summer hols by going off sick. I sort of hope they let me carry on from hospital.

Also (sorry, loads of questions) what is a general sort of criteria for returning to school? I guess managing a specific meal plan? a certain WFH?

Curly, camhs helped with getting school off my back when my dd was still at school last year. They sent letters updating them on dds health so school didn't mark her absense as unauthorised. I think thry insisted on one letter each half term. At the time she was such low weight school was not advised. Even going upstairs was not advised and there are loads of stairs in school.

I found any communication from school really upsetting to be honest. It was very hard seeing happy healthy school kids walking past our window every day when I desperately wanted dd to be well enough to go.

Dd did work set online, much like during lockdown, if she felt up to it. She didn't do a lot but it helped to have some sort of routine.

@Curlyhairedassasin CAMHS wrote a fairly bland letter for the school in our case. Very much 'She needs treatment by CAMHS, school isn't possible and we'll tell you when it is. Be assured that education is a priority and she'll return as soon as possible.'

DD's WFH is currently 84%. I have no idea how good it back that number is. And I guess in the greater scale of things it's not as meaningful as the direction we are traveling in.

The doc here kept saying it's not 'that' low. I think it was more the rather sudden escalation if her ED and the sudden intense restricting in combination with free falling weight over a few weeks which landed us here (with terrible obs).

how good or bad that number is

85% is usually the threshold for going back to school but no PE, etc.

I think it depends a lot for each individual child. DC was much better going to school, even at below 80%. School have been quite supportive in letting her take time off when needed.
Camhs on the other hand were not very helpful.
When her ed started her weight was fine and DD actually got discharged from camhs. With no support from them her weight just went down and down.

Do you know what your dds weight/height centile was pre ED?

My dds was around the 75th centile for both so i needed to aim above 100% as that is based on the 50th centile iyswim.

Some kids have never been anywhere near the 50th centile so it might not be as important to get them to 100%.

As a rule of thumb though you are aiming for 100% with a further 10% overshoot to allow for full brain recovery.

No idea really, girlie, she was always very slender (did loads of sport too). I don't think she was anywhere near the 100% at WFH for her age. We own scales as this was never an issue.

sorry typo. we do NOT own scales... she is at 39 kg now. 100% is at 44kg but ED clinic was very happy with her once we reached the 42 kg mark. She was allowed school and full sporting activities on that weight. And then things escalated.

@Curlyhairedassasin does your school have a pastoral care team? You may find it helpful to get in touch with them as they will be invaluable when it comes to your DD returning to school, working out a reduced timetable, snacks, avoiding any triggering lessons. It would be good to get them onboard now if at all possible.