Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

That’s lovey to hear @NanFlanders

@Curlyhairedassasin I have also tried more planned and supervised exercise. We did yoga with a teacher and at home with youtube My DD had to stop as she went into hospital but it seemed to make sense as a way to channel her desire to exercise. And I hoped it would help mood. Again, not really but I enjoyed it anyhow!

@NanFlanders So happy that things continue to go well. The Oxford offer is amazing. You must be so proud of her! Your DD's story always gives me hope. She has been through so much and such a turnaround!

@Shedqueen Thank you. I will see if she is happy to give yoga ago. She is right now pacing the kitchen. Stomp stomp stomp. It driving me insane 🤯

@NanFlandersthats a wonderful update re your dd, makes me feel a bit teary, I remember how unwell she was not that long ago really.

@Curlyhairedassasinhas your dd got a Fitbit type watch or does she use her phone to count steps? I’d try and stop that if you can, I took a hammer to DDs Fitbit 🙈😂

Dd has settled a lot more since coming home, I think the pp was right about most people lose weight travelling and she was very active (learnt to scuba dive, loads of walking etc) it’s just hard not to panic that things will regress. She seems well now, generally eating well, making good choices most of the time.

@Girliefriendlikespuppies Thank you - and pleased to hear the update re. your DD. It is SOOO hard not to panic, isn't it? The Fitbit anecdote made me laugh - the things we do, eh? Agree re app though - MyFitnessPal was absil

MyFitness Pal was absolutely toxic for DD

@Girliefriendlikespuppies Good to hear that things seem to have settled again with DD! Was hoping it was the holiday effect.

DD is using the phone. She has no access to a Fitbit/SmartWatch.

Hi, my 16 year old DD is several years into this nightmare. Feel as though she has exhausted treatment options in terms of inpatient and day unit with partial improvement but is stuck at around 82% wfh and I reckon her intake is only about 1000 cal a day.
CAMHS are offering relapse prevention sessions then discharge.
Can understand if they can’t offer much more but find the concept of relapse prevention mind blowing when to me she is still very unwell.
I’m so run down with it all not sure if I’m being unreasonable , feels a very weird message to send her to me.
Probably focusing on the wrong thing when the real issue is the worry that she will never be well but it feels really dismissive…

Hi @Juno511 . Sorry you find yourself here, but welcome to the thread! I'd agree with your assessment. There are very significant health risks below 85 percent wfh - often kids aren't allowed to attend school below this. When you say 'inpatient' do you mean general hospital or an ED unit? My DD was in general 8 times, but made no progress until she had quite a long stay in a unit (although it was a traumatic experience for her). Even if your DD has been in Unit, perhaps it wasn't the right one for her - her friend had been in and out of ED units since the age of 14, but is now starting to make real progress in Ellern Meade which has a longer stay model. Have meds been tried? It didn't work for us, but a number of people on the thread have had good results with Olanzapine. I really don't think they should be giving up on a 16 year old - I'd be asking for a second opinion - you have the right: Getting a second opinion about your care.

@Spendthrifting Did you get the home visit? Hoping it was helpful/will be helpful in getting you and your DD some more support.

@NanFlanders Thank you. I’ll take a look at the link and the unit you mentioned. It does feel a bit as if they are giving up on her. I know to an extent we need to find some way to support her to make a change and that’s on us but she feels very stuck and the thought of her staying in this state for years to come feels awful.
Yes she had 6/12 on an EDU and weight restored but starting restricting again as soon as she was discharged. Olanzapine didn’t seem to help so she’s no longer on that.
Just feels hopeless sometimes. It helps just writing it down for people that understand. Felt like I was overreacting when they are talking about relapse prevention when she still seems very ill to me.
They seem to be saying as long as she stays over 80% then there’s no need to intervene.

Hi, just been trying to catch up on the threads - I’ve not posted for a while. Hope everyone is doing okay.

My DS is being discharged from ED team as he has stated that any thoughts around body image have resolved and he’s not trying to lose weight.

He’s still underweight though, currently 77% wfh and has just lost a kilo as he now only eats one meal a day (stopped eating lunch a couple of weeks ago). Apparently he just CBA to eat as it’s too much effort and he’s bored of it. He has agreed to try supplements though which is progress.

Taking a step back seems to have had a positive impact. His mood is also a bit brighter. I given up all hope of him returning to education, but on the plus side taking off all pressure does seem to be having a beneficial effect to his MH in general.

@Juno511 and @SmokeyPink I hate how our kids are discharged too soon, which inevitably leads to ‘relapse’ and them becoming the so-called ‘revolving door patients’. Add to that the fact that they probably didn’t receive effective treatment early enough anyway and you have a perfect recipe for an eating disorder to thrive. I presume it must be a funding issue (which is why the Hope Virgo march is so important as she targets government) but it does so much damage. The kids get one of two messages; either that they are fine and we are overreacting or that they are untreatable, neither of which is helpful.
We are in the private system now and I can see that if you can pay for it then discharge before you are fully recovered is not advised. But of course the cost is phenomenal for an illness like anorexia which takes so long to treat. The further down this road, I go the more I believe that we have to become experts in helping our loved ones overcome this illness. We need to take over once the immediate work of making them physically safe has been done by the clinicians.

From everything I have learned in workshops and from family therapy, we need to bring as much joyfulness into their lives as possible. I know from experience how hard that is as my DD became so isolated during her illness but it really is so important to make sure that they have as much fun as possible in their lives as they try to stick with recovery.
Please look after yourselves as it is hard to be joyful if you are totally wiped out.

We are not there yet with recovery but I take so much hope from all the wonderful stories I have read here.

@SmokeyPink I agree with everything @Shanghai101 has said. Are there at least arrangements in place for the regular medical monitoring of your son's physical health? At that WfH things can go downhill pretty quickly. Thinking of you x

I posted in the previous thread not realising that we’d moved here. Although not ED related my marriage is the eating disorders latest casualty. Been together nearly 20 years and it’s over. Trying to work out how to navigate things with dd14 until she finishes school and we can cut ties
I’ve gone away for a week to visit family and I feel utterly lost without dd but also relieved as for once it’s not me “on duty” 24/7
My own health is also not great and I’ve had an eating disorder rear its ugly head. When dd was doing phase 1 and to a lesser extent phase 2 FBT I completely neglected my own health and without even realising it was skipping meals as I didn’t have the “mental capacity” to make anything beyond what dd needed. I’m linking up with professionals but my EDQ score is scarily high. Quite confronting if I’m completely honest. Got a wonderful medical team: an amazing gp and a private dietician and I’m just about to link up with an eating disorder psychologist.
DD has been asked to attend one final wrap up sessions with CAMHS which is an achievement but also incredibly daunting as a parent
I am rambling but would really appreciate some virtual support as I’ve never felt so alone in my life

Thanks @Shanghai101 and @NanFlanders

Yes, the plan is that he will be referred to a dietitian outside the ED team and GP will monitor his physical health. But DS is refusing any further physical monitoring as he doesn’t care what his weight or BP/pulse is so it’s irrelevant.

It’s very difficult to know what to do for the best really. One suggestion by CAMHS is that this is as good as life gets for DS so we should just all step back and allow him to live his best life in a way that works for him. Which is kinda sad really.

@Cantfindthewordsddstruggling sorry to hear you are struggling at the moment. Sending virtual hugs

@Cantfindthewordsddstruggling so sorry to hear about your marriage. I hope your week away with family is a break for you. I’m sure you have compassion fatigue after caring for your DD for so long, it’s not surprising that your own health has suffered as a result. I hope DH gets a sense of just how hard it is for you being on duty all the time.
I can’t imagine how hard it must be to have to now battle your own ED having just got your DD to the point of discharge. Sounds like you have put together a great team to help you though and we are here for you too. Sending lots of love and hope your way

@Cantfindthewordsddstruggling
so sorry things are so difficult. AN seems to bring some families/parents closer together and work as a team, and for others it drives a wedge and just causes endless destruction. Our household falls into the latter one and from your I seem to remember that things have been very difficult with your DH too. I hope the week away with families will help you to recharge your batteries a bit and to tackle whatever lies ahead. Good to read you have a supportive team around you. I sometimes wonder of doing it all alone might be easier than having to fight DH on occasion. Doing it on your own may be the easier option even if it doesn't look that way right now. Sending much love!

I wanted to pop back on here and give a little story of hope to you all..I recognise some of you from when I was a regular on these threads (during 2021, 2022 and 2023).
My DD is now nearly 18. (She was diagnosed with AN Dec 2020 aged 13).
Some of you may remember that she was an elite footballer.
Since getting weight restored and then eating mostly autonomously from summer 2022 she has continued to play her sport, representing a major team's academy side and also her country!
She is currently sitting her A levels and is going abroad for uni to a v prestigious uni on a full football scholarship (not the US, thank goodness).
She continues to go from strength to strength and is unrecognisable from that lost little girl in lockdown, completely in the grip of the AN monster.
I just wanted to say that recovery is possible. I honestly couldn't see a way out with DD.
Its taken me even longer than her to move on. I am still having the odd intrusive thought about how she will deal with living away from home and managing her own food completely. But I am sure she wouldn't go back on purpose. And she understands how much food it takes to fuel her sport, she has had a lot of good advice about that.
So anyway I hope you don't mind me popping on to try to give you all some hope.
You are doing amazingly. Keep the faith.

Lovely to hear positive stories. I’m so sorry to hear about your trials @Cantfindthewordsddstruggling . Sending love .

it’s so terrible that our children can be discharged when they are far from well. This doesn’t happen with physical illness, especially for children and young people. I could scream when medical services step back because patients don’t want monitoring: not accepting they’re ill is a feature of the disease.

My daughter is hanging in at home - the longest she she’s been at home and not in crisis since autumn 23. Still has every meal with me and eaten nothing other than supplements and chicken sandwich & yogurt since last July. But there is progress of some sort compared to a few months ago. Services continue to fail to deliver: she had three no-shows last week alone. It feels true that we are on own once the medical emergency is past.

@Shedqueen we are on our own in one sense but there is invaluable support and advice to be found in the workshops and support groups offered by Jenny Langley at The Charlie Waller Trust. I would highly recommend them. It’s a lot to take in, but she sends all of her resources in follow-up emails.

@Lottsbiffandsmudge So great to hear your news. That's wonderful news - you must be so proud of her! Others still struggling - recovery is always possible - hang on in there xxx

@Lottsbiffandsmudge congratulations to your DD and you 😊. She sounds wonderful. Wishing her the best of luck at uni. X

@Lottsbiffandsmudgelovely update, our DDs were really unwell around the same time and I can remember your posts kept me motivated and pushing the double cream!

My dd seems to be in a really good place at the moment, she spent the day chilling on the sofa Ystd and told me she needed a do nothing day. This is such a shift from her feeling compelled to walk every single day otherwise she’d punish herself.

Recovery is possible, it can take a long time but all we can do as parents is keep feeding and keep the faith.

It’s so nice to see them choose to do nothing. Bit of good news here too: she went to a taster day at FE college for September after two years out of education.