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.

@BagpussSaggyOldClothCat that is so upsetting and very difficult when they are entering adulthood. Unfortunately this sounds like the ED being sneaky and cementing her body dysmorphia.

Shanghai101

Weight gain and meds are helping but I believe the next step needs to be therapy of some sort to really get to the bottom of why her ED developed, otherwise she's got no coping skills if she starts to relapse. There was some bullying at school, I believe girls were laughing at her about her looks, but she won't talk about it. This seems to be where it all started along with the mental affects of lockdown, lack of socialisation etc.

It's incredibly hard to see my beautiful girl saying she's ugly and covering up mirrors. She's come a long way from starving herself and is not in physical danger anymore, but her body image issues are in the way of recovery.

ReineDeSaba

Care is severely lacking at all stages of ED and it's absolutely heartbreaking. In any cases there's a postcode lottery as well. Hope Virgo is doing good work raising awareness of the lack of care. She has a fb page.

@summertimessadness24 I’m so sorry to hear about the lack of support in hospital, it’s so difficult when there seems so be hardly any training or experience with EDs.

So our assessment went on for over an hour (virtual over zoom). DH and I gave as much info as we could. DD ended up speaking to them alone at the end and she must have really explained to them how she felt, they understood that an inpatient stay would be distressing for her. They have suggested we try increasing to at least 1000 cals at home for three days, then 1400 and so on. If nothing changes by 2 weeks time then it will be straight to the clinic/a section. I asked about risk of refeeding syndrome but they say as her obs are ok a gradual increase would be fine? I think DD is desperate to stay at home so might manage this. I feel such a bad mother whichever decision we make. She ate a croissant after the meeting this morning, first time she’s had breakfast in months. Then a sandwich for lunch which she let me make and we’re yet to tackle dinner, but she’s told me she will try to eat something. We were advised to do her height and weight as this hasn’t been done in a few weeks and she has dropped to 33kg (59% wfh)… Am I doing the right thing by seeing how the next few days go food-wise? At least we know there’s an inpatient place for her if the eating stops...

lyriccat

I'd take it day by day and seek help asap if you feel the plan is not working. At such low weight she's got no reserves and needs to eat her whole plan.
I really really hope being able to stay at home gives her the motivation to eat and get well ❤️

You are by far from a bad mother - you sound lovely
Take it day by day
If I were you I would try tomorrow and keep going into a&e for bloods / obs every few days if no intake around what you've advised

My gp has agreed to weekly bloods and obs which is something
Could you ask for this ?

An update from us

Disgusted to learn that the hospital want to discharge my DD!

Looking at coming home tomorrow
I'm beyond what I can do to
Help her - she hasn't eaten since last Tuesday and coping on fortini!!

Been told hospital isn't the place for her
They are there to ensure she is medically well and she is as obs fine
They are not there to make her eat

Sorry to hear this 😢 are there any day centres near where you live? I've heard they are v good r.e supporting to get the food in and also offer family and group therapy, and a less intensive option than inpatient. If your DD's weight is not dangerously low and her obs are stable then I don't see why this couldn't be an option. The clinic near us looked very good but unfortunately DD is too unwell right now.

@summertimessadness24 I seem to remember you're in the south east too? Feel free to drop me a PM and I can give you the details of the day clinic we were looking at

Yes pls x

So an update - DD is now refusing not only
Food but Fortini and the ED clinic have said recovery starts at home and that weekly visits are in place and we need to ' trust the process ' and know that parents not professionals are key to recovery ?
She's still in the ward but they do want her out. Both the DRs here and now the ED clinic So I will be looking at day clinic options as surely this cannot be her plan ?
She hasn't had any intake since yesterday and is not able to even take the Fortini
She's very unwell yet her obs are ok!
The email reads ' professionals are not the fix here, parents are '
I'm quite surprised by this email but if this is the ED clinic by a senior nurse what chances do we have ? Yes I want her home
But I also want her to be safe
How is everyone doing ? X

The wording of the ED clinic when asking for more help then we are getting!!
Where do I even go from here?

drs have been round and said her bloods are fine so as far as they are concerned it is out of their hands and she can be discharged

This is the email from ED clinic -

One therapeutic session per week is standard procedure for FBT phase 1. I appreciate it might not feel like much and as parents you might be feeling out of your depth to manage this, but it is really important for me to impress on you that professionals are not the fix here – the parents and the family network are the key to success with FBT. My role is to support and guide you within this. Evidence shows that this treatment has the highest rate of success for young people and although it feels scary to trust the process, sometimes you have to take that leap of faith. Hopefully once you feel clear and confident about your role within FBT and how it works, you will feel more reassured that the change happens at home and not in the clinic setting.

gosh, summer, that is shocking. Can you complain to PALS?

If DD is not eating, she will become very quickly unwell. Are there any inpatient ED clinics you can contact? Wish I had something more useful to say. Just so angry on your behalf. FTB works great for some but isn't clearly not enough for some esp at your stage.

Well we are still in hospital so I guess zero calories in 24hours surely soon they will have to take action

I'm going to call the duty team if I don't get a positive result after this ' meeting '

@summertimesadness24
What a distressing situation.
Hard to understand what the ED team are thinking. Is she drinking ? Are they checking her blood sugars? What duration of complete calorie refusal do they suggest you can safely manage at home.
The successful outcome of FBT as a treatment isn’t really the main point when she has zero intake.
So sorry you’re in this position.

Oh summer I can't believe that email.

FBT is effective, and many of us here are proof of that, but not if the sufferer is completely refusing food. My dd severely restricted but didn't refuse so we had something to build on.

Sorry to be so abrupt but if she's not eating, she is being sent home to die. How do they know you are mentally well enough to constantly coax food into her? It's hard enough to do FBT when they will eat. How will they check you are both OK and that you are coping?

I think it's a very dangerous situation. You need and deserve better. I'd actually refuse to leave the hospital. Can you contact PALS and your mp?
Sending you so much love. Wish I could help x

www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

__

This is utterly shocking @summertimesadness24 . There is not a one size fits all solution. FBT is clearly not sufficient and appropriate right now. Your DD is starving herself to death in front of them, what more do they need to see??!

I agree with you all and I will be remaining here fighting for my DD who I believe her intention is to die

I feel no one is on my side and I will be refusing to take her home

Thank god for this thread

I am in utter disbelief right now

She's just refused her lunch

I am in full on fight mode right now

no idea if that is an avenue but can you contact the local MASH team (safeguarding team) and asked them for support as you do not think you can keep her safe (alive) at home?

@summertimesadness24 im
so sorry that you are going through this. Completely agree with others that when dd is refusing all intake FBT is not appropriate when she is in such extreme crisis. Stand your ground mama bear!

I shall look into this thank you

Summer, just wishing you good luck.

Summer, I too would be refusing to take her home under these circumstances. I think bloods can go from normal to off very quickly and the risk of her deteriorating very rapidly at home is too much to expect you to manage. Our ED psychiatrist told me that young, otherwise healthy, patients with EDs are so good at compensating that they can appear normal right up to the point of collapse. What does the doctor say you should do if she continues to refuse food/supplements? How do you manage this at home without observations?

Agree, DD was on 500 cals and we went to a&e on a Sat and all was normal. By Monday things tipped and she was put in HDU as her all her ones were very abnormal. She was critically ill at the point - when all observations were fine just 48 hours earlier. It is scary how quickly things can change. DD was screaming and kicking off when we called the ambulance. You would have never guessed by looking at her how ill she was.

@summertimessadness24 God that email reminds me of when our DD was first diagnosed two years ago- she was refusing everything but wfh wasn’t as low as it is now so as we pleaded for more support, our team insisted we kept trying with meal plan and FBT approach to recovery. It worked eventually short-term, but lead to this more recent relapse. I'm certain if we had been offered day-clinic treatment at that point, problems would have been brought to the surface there and then, and the further deterioration could have been prevented. There’s really no ideal approach with any child going through this but community treatment doesn't help everyone, and clearly your DD needs more support.