Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

So we had 2 on red on one admission and 3 on another

Surely this is the case for your DS?

Red was engagement, weight loss and low calorie intake

So our advice was any red and any less than 500 calories for 2 days it's a@e

It's a battle if they will admit you or
Not but at least if not you get bloods and ecg, however I insisted and said the wording ' we are not safe at home as I cannot manage as she will not eat' and what really made a difference was ' I believe my daughter's intention is to die '
I know that seems awful but I honestly believe it was that which made a difference

The ward wasn't appropriate and I hated leaving her every day but at least I know she was safe

It took 3 weeks over 2 admissions to stabilise her but she is in a much better place and eating

Any person attempting to take their own life would consider a section but a child with a ED send home - it's crazy

The difficulty is he won’t consent to being assessed and they won’t assess him against his will until he’s red. But they can’t actually know whether he is red or not without assessing him.

I will start keeping records of his daily calorie intake as that might help. It’s tricky though as one day he’ll eat a McDonald’s but then the next he’ll eat nothing, then the day after he might eat again.

His weight loss last week was 0.8kg. I’m not sure what he lost the week before that as he wasn’t weighed but in total he’s lost 2kg over 3 weeks, which looking at the chart would be amber.

Could argue he’s red on engagement. I’ll try getting him to engage with 3x snacks and 3x meals daily then in two days if he won’t comply I’ll try again to get him assessed.

Hello, my daughter was diagnosed with an eating disorder today. Started refeeding in earnest tonight. We've been in the kitchen for an hour, and she's on the floor, curled up. What should I do?

Plate the food up and put in front of her.

I sympathise, dd did the same on the day she was first assessed.

Just sit with her quietly, offer reassurance, tell her you're sorry this is so hard but you know how to get her better.

Welcome to the thread although sorry you've had to find us.

@Propermadam sorry you found yourself here. Have you seen Eva Musby's book and her videos on YouTube? Lots of things which I found helpful in the moment when we started.

Separating her from the ed is an important strategy, as is being able to keep going in the face of her distress. She will probably be terrified and the ed will be furious. It's hard going, but if you can persevere then we got into a routine which helped.

I've been reading the thread over the last few weeks although I've not posted a lot. So sorry to see how hard things have been for a few of you, and the difficulty getting support and help. It's mind boggling, although I know from my own job that things are so so stretched at the moment. I think that maybe leads to clinicians who are burned out, and who can't hold compassion for the people in front of them as easily.

We are still going, it's very up and down. As soon as I think we have turned a corner we are back again. My dd is still on the camhs waiting list, but they tried to discharge her last week because her weight has come back up. Furious. Managed to persuade them to stay on - dd has put on weight but as soon as we stop making her eat, she will stop. It's as simple as that...

Sending everyone a hug and some strength. This is the hardest thing I've ever done, and I wish none of us had to go through it. 🧡

Propermadam

Welcome. You're in the right place for advice & support. We've all been there. Eva Musby explains how to 'Connect before you direct'. Keep telling dd you're so sorry she is going through this and you are here to help her. Do this all day, not just at mealtimes. I wrote dd notes and sent messages to keep telling her I was on her side and would help her get better.

Tbh there were times my compassion bucket ran dry. You'd have to be super human not to crack at times. But we'd start again the next day.

greydoor

It makes me so mad that parents have to fight for help to basically keep their child alive. I am regularly shocked by the things I read on here and frightened that parents are expected to cope alone in such extreme circumstances. We are expected to find super strength to keep our child alive whilst coping with work, other children, ageing parents, our own MH, COL crisis etc. I dread reading the news if I see an eating disorder headline. The numbers are going up but the treatment is not fit for purpose. More needs to be done, especially in the early days where good quality fast intervention could stop disordered eating becoming a full blown entrenched eating disorder.

I hope we can help fill the gap to help you while you are waiting for camhs x

Oh @greydoor it's astonishing that you've been going all this time without any professional support, you're a superwoman in my eyes!

@Propermadam sorry you find yourself here. I would just repeat the advice above, sit with the distress, in yourself and your DD. I used to say to my DD, this is so stressful for you I know, we're going to get through this but the only way is to eat your way out of it.

Am sorry so many are struggling at the moment and I wish you every strength for every day you need it. Once we were in established/stable recovery, I took some time to recover and am now re-energised to fight for better treatment, more awareness, more funding. Through work, I've been able to feedback to our ICB about the state of service delivery, and have been able to promote engagement with a local ED charity and I've entered campaigning mode.
To that end, I am looking forward to the second eating disorder march coming up soon. It was emotional and uplifting last year and I got to meet the fab @NanFlanders. It helps me to now bundle up all the pain, the fear, the distress and anger into something positive that will hopefully mean that in the future fewer women will need these threads. (obviously I'm not that naive that this will happen soon, but....)

So, I know for many of you it will be too raw to come on the march - and if so we'll march for you and your DC.. But if you think you would be up for it - please do DM me or Nan and we can add you to the Whats App group. This year @NanFlanders I think I'll make a placard! (There is also another MNer coming but I'm not sure if she's said so on this thread so I've not @'d her !)

https://www.tickettailor.com/events/dumpthescales/1107791#

@myrtleWilson Placards is a great idea! I'll ask DD - she was thinking of coming but has theatre tix with a friend, so maybe she can help me. Yes, please do DM me or Myrtle and we'll try to co-ordinate a meet-up.

I’m glad people are campaigning. I have been shocked at the way we’ve been treated the past couple of weeks particularly by CAMHS who are not fit for purpose.

Hello. Please can I jump on for some advice? After months of trying to get dd seen, in which she got to the point of not being able to climb the stairs without help, she was finally assessed by the ED team.

By then, we had started refeeding at home and her weight had increased from 78% ideal body weight to 84%.

The team diagnosed ‘disordered eating in the context of anxiety’ and are quite clear that dd does not have anorexia. The reason for this is that she doesn’t see herself as overweight. She sees herself as a normal size, even though she is significantly underweight. As a result of believing that she doesn’t have an Eating Disorder, she has been referred for anxiety therapy rather than treatment under the ED team, although the ED liaison nurse will weigh her fortnightly.

I’n unhappy, and want her to access specific ED help. We are continuing a meal plan although they don’t like our calorie counted one and want to focus on portion sizes instead. Ok.

Do any other young people have a diagnosis of anorexia, without seeing themselves as fat? Dd can’t see how thin she is, but doesn’t believe she is overweight.

I’m fairly experienced with ED’s, used to work for Beat, and don’t think they are applying the criteria correctly?

They are also using centile charts to monitor weight rather than IBW, and so feel that her weight is ok, because it isn’t off the bottom centipede Her weight is not ok.

Thanks so much to anyone who replies.

Hi @WaitingForMojo I'm so sorry to hear your DD is not getting the help she needs. My DD's (diagnosed anorexia) thinking is just the same as yours. She is very underweight but sees herself as normal. She's said specifically how she sees her thighs in the mirror as normal size and can't understand how anyone sees otherwise. But she doesn't feel fat or overweight. I do think your DD has anorexia and I'm disappointed she hasn't been diagnosed by an ED team especially. Well done for initiating the refeeding at home, please keep doing that and following the AN treatment guidelines anyway. Weight for height charts are also the most accurate for kids and teens, who are growing and need literally more fat to survive. Percentiles and BMI are used for adults, once weight has settled. Have you tried speaking to your GP about this and asking for a re-referral?

Thanks so much, this is what I thought. It took us SO long to get seen in the first place. Her first referral was rejected, and we then took her for private assessment, which cost an absolute fortune and wasn’t great either.
But did recommend ‘hospital at home’. We had to do the meal plan ourselves and increase gradually, which we did.

She is still being weighed by the ED nurse fortnightly and can be re-referred to the ED team if she deteriorates, which I think means if she loses weight, which she won’t because we are supervising her every meal and snack.

We’re going to express our concerns to the ED nurse next week. We already have, but will again. I just want her to have ED focused therapy.

@lyriccat when you say weight for height charts, you don’t mean the red book centile charts? Which is what this team are using. BMI wise, DD’s is 15 now, after over a month of refeeding. I know they don’t use that in under 18’s though. I’m just not sure using a weight centile chart is accurate as she is very tall (height 91st percentile).

She also isn’t having periods, but the ED team said that the hormone blood tests show normal FSH levels, so they don’t think that is due to her weight. She has a separate gynae issue, but her periods have never stopped before until she lost so much weight, so that seems a bit of a coincidence to me 🤔

@WaitingForMojo my DD experience sounds similar to yours. We don’t have a diagnosis so just being seen by GP. She’s gone from 79% wfh to 83% and last week lost 3kg in 3 days but still can’t get anyone to take me seriously!

weight for height charts can be found on the MEED guidelines on the royal college of psychiatry website (I think) or royal college of paediatricians.

Sending strength and solidarity.

Thank you so much @Glitterfarti . I had anorexia treatment myself, and looks like not much has improved in over 20 years.

How do I go about getting DS to eat more? I’m trying 3x snacks and 3x meals but he’s devised his own meal plan which is that he will eat a lunch made by him (one piece of plain toast) and then he will eat whatever I make him for dinner. No puddings. But as he’s eating so little for lunch even though he is eating the dinner we are only averaging 1000-1200 calories a day. Which I don’t think even covers his basal metabolic rate.

Unfortunately it was only the threat of hospitalisation that made dd comply with our meal plan. Lots of sitting with her for an hour at each meal and snack, reminding her that she needs to eat it here, or in hospital, that not eating it wasn’t an option. The day she had to go to a&e I think she realised hospital wasn’t an empty threat and saw the reality of it.

We have a positive / win over here

Many of you know that my DD was hospitalised recently and she's only been home since Monday after 3 weeks in, 6 a&e visits and 2 admissions in total

She has eaten for a whole week! And the meal plan ( 2,500 calories ) since Monday I've managed a 2,750 and 2,600 yesterday!

I blind weighed her and she's put on just over 2kgs!

She's never eaten so much / so well
I know it's early days but just wanted to give some positivity

Can someone please give me the wfh calculation pls? I've lost it and tbh the clinic are useless and not doing obs til next week

The outreach home visit was cancelled yesterday due to staff sickness

X

@summertimesadness24 it's a bit complicated. I have an app and can run it for you. I need height and weight (metric, not imperial) and rough DOB (month/year).

How do parents support Dc who self harm in response to their eating disorder and distress. How prevalent is SH in conjunction with eating disorders?

Thanks

Thank you
She's 43.3 kg weight
160cm
August 2011 x