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.

DS had his appointment with CAMHS on Monday, very frustrating on a number of levels.

They measured him 5cm shorter (he slouches) than his actual height which makes him on the 3rd percentile on the NHS BMI calculator which is apparently within the ‘healthy weight’ range?! He doesn’t look healthy. Using my measurements he is less than the 1st percentile with a wfh now of 78.4% as he’s lost a bit more. He’s arguing he hasn’t lost anymore it’s just ‘fluid fluctuations’. At the height they measured him his wfh is 82%

I don’t know what the plan is as I wasn’t there but apparently the clinician will contact me.

I’m also frustrated as before Christmas we took him off fluoxetine with a plan to switch to sertraline. Then the psychiatrist abruptly left before we got the sertraline. Looks like we won’t be getting it now as new clinician is less keen on medication and DS said he didn’t want it and clinician said it’s his choice.

I guess I’ll just have to wait now to speak to the clinician. Meanwhile DS continues to not eat very much.

So it looks like DD will be having the tube after a complete refusal of food / fortini 😩

@summertimesadness24 it’s obviously not where you wanted/hoped things to be but at least now dd is getting the nutrition her body and mind so desperately need. Thinking of you both: hugs 🤗

Well at least they're taking some element seriously.

Summertime, I can imagine how distressing that must be for both of you but please hold onto the positive outcomes on this thread of DC who needed NG feeding and are now recovering and back at school. Can she be moved to a specialist ED unit as they will have greater expertise in caring for someone with an ED? Sending you hope amidst the distress x

There's also the cqc which you could go to?

www.cqc.org.uk/contact-us/report-concern/report-concern-if-you-are-member-public

@NCTDN yes finally now she hasn't had anything for 30 off hours and my god I've had to fight, email ED clinic, meetings with the nurse in charge, cried and been here for hours on end but yes 🙌 but they still are talking about discharge 😡
But ' filling her with nutrition before she goes'
It's really concerning that if I hadn't had advocated so much for her we would be at home by now

I mean it's still scary to think in a few days we will be home ' full of nutrition ' as the nurse advised to refuse food
But I'm trying to cross that bridge when it comes to jt kind of thing

I'm exhausted- my baby has been up in the
Night and up early and I feel so mentally and emotionally drained after today

They have scare mongered me into saying ED clinics are terrible and she won't come out how she went in, saying it's full of people who are very mentally ill, self harm and will try and get my DD to join them
The nurse said she used to work in one and she wouldn't send any of her family members there

Hello all, I've been reading for a while and have appreciated the words of advice and hope for the future so thank you for making me feel less alone.
My DS spent 15 weeks on a children's ward last summer after stopping eating and drinking and losing so much weight. He expressed wanting to die and quite honestly we've been through the very worst of times. He moved to a specialist clinic nearly 100 miles from where we live in October and is likely to be discharged in the next couple of weeks back to our community team. He has an ARFID diagnosis.
Summer - I was told exactly the same as you said regarding inpatient places - they won't come out the same child etc. so very hard to hear in the most desperate of times.
My son is on the road to being better but still has some way to go. Like many of you the children's ward was not the place for him and the dieticians etc did not understand how to support him. Sadly I now have experience of many things I wish I hadn't - NG tubes, being sectioned, my child being an impatient miles from home. I'm happy people message me if I can help in any way - by no means an expert just lived recent experience.
Thank you to you all for helping me and giving me a glimmer of hope in the darkest of times - this thread has really helped me, I'd like to stick around if you'll have me x

Thank you for sharing your experience and it sounds like you've done so well getting help for your son.

I'm just so scared for her and I just hope
After tomorrow we can get moving as she's not eating in so long

They are going to give her an opportunity to eat breakfast and if not then it's tube

I know that feeling too well Summer so I'm sending you a massive hug.
To be honest I count us lucky as we got support from CAMHS very quickly as they understood how ill my son was - I know this isn't always the case. We had to push for him to move into an inpatient place but the delay was partly because CAMHS wanted my son to remain locally and there was space for him however locally they don't accept NG patients so it wasn't an option for us.
Take one day at a time, you are not alone x

@Tooglamtogiveadamn2 Thank you for sharing your experience and wishing you the best for when he is discharged soon

@summertimessadness24 I'm glad hospital are at least giving the tube now, even though it's not the best solution long-term, she desperately needs that nutrition. Have they said when they are planning to discharge her/how long she'll be tube fed for?

DD has eaten about 900cals today, most we've seen her eat in months. I think she's doing really well, even though she's got so far to go. I think the reality of inpatient must have got through to her, and she's trying her best to stay out. I'm hoping if we can starting putting some weight on at home, she can join the day-clinic near us. But she'll have to be at least 10kg heavier, we've been told. She looks so frail now, I can barely look at her ☹️

No they haven't said anything at all
Communication has been very poor
Just that it will be happening after breakfast if she can't eat
I'll guess I'll find out tomorrow

@summertimesadness24 what a shambolic mess. Filling her up via tube to discharge. I have no words. Have you contacted PALS?

fwiw, DD always avoided the tube and started eating when the threat was imminent (we came close a fair few times).

I will be doing that - just didn't have the energy yesterday
I'm hoping she may at least attempt breakfast now she knows it's imminent
They did say that can happen or ask for it to be taken straight out

As an alternative, do you have a different hospital nearby? We were on a general paeds ward and whilst it was not perfect, it was so much better than what you are getting. I don't think your treatment is the standard for general wards. Seems you have been really unlucky.

She is on a children's general paed ward and the only hospital near by is practically the same but an hour away - has the same staff and they hop between the two unless we go out of county which I wouldn't know where to start

DD13 AN who we thought had stopped Self harming has been doing so again. The eating disorder is challenging enough as it is without adding this to the mix again. Just wish we could go back in time and none of us be facing this nightmare. I’m running on fumes with very little sleep. I’m safe at present but it’s getting harder and harder to face this hell.

@summertimesadness24 I am so cross that the nurse should be scaring you at a time which is already terrifying. My DD was in an ED unit for 9.5 months. She DID find it traumatic, but it also turned her around: she has been very, very ill with 8 paeds admissions for medical stabilisation. She is now doing well and had her final appointment with the CAMHS ED team yesterday. (Moving to Adults ED team as she is nearly 18) and the feedback she gave was that she wished she had been moved to Tier 4 earlier rather than being allowed to deteriorate to such an extent that she ended up spending longer in there than if she had been transferred when it became obvious that FBT wasn't working for her. They ARE full of very ill people - AN is a very serious illness. But the patients seemed to be mutually supportive and my DD came out with a huge book of notes from the other patients encouraging her to fight the ED and live her life.

@NanFlanders wow that's very inspiring and your DD sounds amazing and the fact she's able to reflect that - what a brave thing to say. I will take that piece of advice into consideration
When the nurse said that to me I then later thought so she's deeming my DD not that unwell?
She's a mental health nurse and we've had no input from her since we've been here because she's too busy
Just one meeting yesterday and only because I was on and on and on and one 5 min chat to DD
Food refused so waiting for DR to come
Round

DD said she is nervous but also I think quite resolute as she knows she cannot eat

My DD has also been SH but nothing recently- sorry you find yourself here
It's an absolute draining thing to go through

Update is that they are really pushing DD to try and drink and not have the tube

They are saying you may as well drink the Fortini coz if not the tube will be going down
So she may as well drink it

They seem almost annoyed with her

The mental health nurse imo and nurse on duty today are scaring her saying the tube is awful traumatic and painful

But the thing is I really feel she CANT eat

I feel so helpless

I'm worried when she gets home and doesn't eat

I get the tube is the last resort but it's just dragging on

Any advice ?

To add she hasn't eaten for 2 whole days
No calories
No food no fortini

if she is nil by mouth, she will need the tube to get fed. But you also need a plan how to move it forward. DD never was at that point but what turned things around for us was Olanzapine. it's a medication usually used for psychiatric disorders but in low doses, it is used to treat the severe anxiety that goes hanc in hand with AN and food intake. It works within a couple of days (not weeks), so very quickly. Olanzapine was key to get DD to eat. The ED psychiatrist prescribed it. Maybe worth a chat? Sounds like DD would be far better off in an ED unit. Hopefully someone else will be along with better practical advice. Huge hugs, it's so so hard! you must be shattered.

@summertimesadness24 @Curlyhairedassasin Great suggestion about the Olanzapine. Very effective for many and it helped my daughter for a while (until the ED made her stop taking it). But it took the edge off the anxiety around eating certainly. I'd ask for it. Do monitor it closely though. Anorexics often keep it under their tongue or at side of cheek and then spit out for that very reason.