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.

@Girliefriendlikespuppies oh this really resonates with me. The second guessing of ourselves is exhausting, and it's hard feeling so responsible for things all the time. Not many people behave perfectly all the time, I find it quite hard that I'm poring over parenting 'mistakes' I might be making at the moment. Everything can feel so fragile though. Last night I was so tired after work, dd was in the living room and wanted to watch something on tv, but also play a loud game on their laptop. My brain couldn't take the noise and I clearly looked irritated because the next minute she slams it shut and stomps off upstairs. I wish there was a space where I could just be a human being sometimes!! Dunno if that makes sense!

How has today been @summertimesadness24?

Update from us:

DD is managing to eat. Small amounts but nothing like refusal at home. When she only manages 1/4 or 1/2 they are making it up with a fortini drink so she has managed around 1k calories today. Yesterday was zero so although day 1 this is good - I don't want to get ahead of myself as she's a long way of not needing help assisting to eat but we are doing it in shifts between me my husband, her dad and nan. I've taken the week off work so I could focus on her, my baby and running the house. Making sure there's dinner as not really seeing my husband so making sure we are ok too.

She's in good spirits, and I can see she is trying. She's had headaches and tummy aches but is ok. The nurses are lovely and a credit to our NHS. Everything is measured and timed and it's actually been a breath of fresh air - when they know she hasn't eaten it all a drink comes in all measured.

I've never seen her eat so much / so well
It's made me realise how much I was struggling at home

They do food for one parent too so it's been helpful in that respect.

She's having bloods every other day and weighed 2 times a week.

I hope everyone is doing well.

So SM no SH no worries that her heart is going or her blood pressure going so I feel better than I did

Thank you all x

@greydoor thank you for checking in

Summertimesadness24

So lovely to hear your update. It sounds like dd is in very safe hands and I'm glad to hear she's managing to eat. I hope you can relax a little now and get some well earned rest, mentally & physically xx

greydoor

That makes total sense. I fantasise about having a normal life again.

Bad day for us today....

Day 2 of hospital and she's now refusing food 😩and the nurses on shift didn't seem to know she had a meal plan so bringing her normal size portions and offering her for she shouldn't 😳

A very frustrating day

Hoping for a better day tomorrow

She's had hardly anything today 😩

Oh no summer have they talked about an ng tube if she doesn't eat? Im sorry she's had a bad day.

summertimesadness24

I'm so sorry, that must be incredibly stressful. I really hope today is better but I agree it might be time for tube feeds if she keeps refusing.

Summer sorry to hear that yesterday was a bad day. The only consolation is that hospital can monitor her carefully and intervene where necessary. I know you cannot stop worrying about her but at least you can share that worry now.
Hoping for a better day today for everyone x

Hope today has been a better day @summertimesadness24? Agree with Shanghai, hopefully you can feel a tiny bit less of the weight of all of the responsibility as it's shared. And I guess it's also good for them to see the reality of how much your dd has been struggling too, so they can use this info to work out the plan. But hard to be going through.

It's parents evening this week here and I've been quite incredulous at the sheer variety of compassion I've heard. All of my dd's teachers know she has AN, and some have been incredibly compassionate and thoughtful in how they've been supporting her, and some have just been a bit almost irritated. One said to me they couldn't possibly comment on her progress because she had only recently managed to attend lessons more regularly, as if she has been choosing to be off. Even on the days when I'm most weary of all of this, that kind of approach never fails to bring out the mother tiger in me - poor DD!! People are so annoying sometimes!!

greydoor

I found the same at dd's parents evenings. Some teachers were absolutely lovely and very concerned about how they could help her by sending work home etc. Others seemed very nonchalant about it and pretty much wrote her off for her GCSE'S. Her science teacher was in his 60's and the old school scary type of teacher. He couldn't have been kinder when talking about dd and he even asked how I was coping. I got the feeling he'd had some experience of ED himself.
A few kind words makes such a difference.

Thank you, not really, she's no better here than she was at home
She's hardly eating...
I know it's only day 4 but she's lost 4lbs
She's having obs and bloods which are all ok
She's not managing the food plan which changes each day
Different nurses each day so no consistency
I know it's the ED not her but she doesn't even miss home and looks comfortable
I didn't think hospital would be this experience

I've been off work this week and I'm
Now off next week

It's unpaid but I don't even want to sign myself off sick because I don't feel sick
I just want her to get better!

Also my job won't allow you to work from
Home so it looks like I will have to look for another job on top of this

I've seen plenty of hybrid and work from
Home and I only need part time
But even when she is home I will need to be home temporarily so my job which I love ( I know is it's not all about that) but I do feel sad - I worked hard to get where I am
And now I will definitely have to either be off for a while or leave

Hope everyone is doing ok

Summer

I would ask about ng tube at this stage if it's not being suggested. Every meal that goes by without adequate nutrition puts her at more risk of the ED becoming entrenched and her desire to not eat will become even more rigid. Her obs may be hanging on in there for now but her poor brain will be suffering 😔
She may only need a few days of good nutrition to get her mental state back to being able to eat again.

I think it's very much entrenched already but thank you I will see how she goes today

@summertimesadness24
I'm sorry you’re going through this. I know how hard it is.
I would really push for decisions today. In my experience it’s much harder to get any decisions made as an inpatient over the weekend.
You need a clear plan for the weekend if she continues on current trajectory.
On my daughters first admission she was left far too long before switching to NG and lost a significant amount of weight before a decision was made.
Try and take some time for yourself if you can. It’s a marathon.

I've asked and there isn't really an answer on this
Her obs and bloods which are now daily are all still ok

We've had lots of meal refusals today

@summertimesadness24 have you asked work if you can wfh temporarily? It seems really bad that a company would not let you in the circumstances. Just for a few weeks until hopefully things can settle for you and then be reviewed? Surely it’s better than them losing a valuable employee? Unless it’s front facing of course but any office job can usually been done at home if web based. It’s just extra stress you don’t need. I would speak to HR if i were you I’m sure any company worth their salt would be helping x

I’m not sure how much this helps but by giving your employer 21days notice you’re entitled to four weeks ( I think, double check) unpaid parental leave. https://www.gov.uk/parental-leave

So my DD has finally started down eat !
It's only been 2 days but it's the most I've seen her eat in weeks maybe into months.

She has told me she is only eating to come home as she's had enough, in a ward with 2 babies, no sleep and is begging to come home. It's all great and I want her home but I am concerned the no eating continues at home

She's eager to come
Home but just in experience as we haven't spoken to anyone about any plans since we got in a week today. We take each day at a time. She's having bloods and constant obs and all is looking good
She has lost 4lbs when they weighed her as we had days of refusal but now she's eating all her food ( meal plan ) she thought she could come home the weekend

I've said to her wait to see what the doctor on Monday says

It's been a hell of a week and I guess I'm worried about going back

As in now she is eating and hasn't for so long how long should she be monitored for refeeding syndrome?

summertimessadness24

I'd be concerned that she'll eat enough to come home and then stop again. I'm sure there was a poster in here no so long ago who was in the situation where their dc was boomeranging in and out of hospital.

There is more ED stuff in the media today. Sadly a 7 year old boy died from malnutrition due to ARFID. His poor mum is calling for awareness as she wasn't listened to (I thought of you summer). How can a child be left to starve themselves to death?

ED seems to be reported on quite a lot in the media to 'raise awareness' but sadly the knowledge doesn't seem to filter down to where it's really needed - GP's, A&E staff etc. Why aren't they listening to parents 😢

Hi @summertimesadness24 i don't know if I'm the poster @BagpussSaggyOldClothCat was thinking of in boomeranging but it does fit with our scenario.

Re-feeding for us was a two week period, from a clinical perspective at that point (if the plan has been folllwed) they're clinically out of danger and are keen to discharge. What that doesn't account for is the entrenched nature of the ED and so we did ping pong in and out of hospital. Apologies as I've not been on the thread very much recently so I can't recall what (if any) support you have from CAMHS. We had to get quite pointy elbowed about not accepting ping pong admissions and for camhs support to be there (which to be fair they did - including meal support at home which was a godsend).

I'll have a read back and see if anything else comes to mind...

Thank you and thank you @BagpussSaggyOldClothCat so she is being discharged
So as much as I want her home and yes she's been eating 2 days I'm conscious of coming back
But any signs of no eating I will be straight back here with no hesitation