Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

Lott's, no, I do not expect magic but the meltdowns and violence are so intense right now that it is impossible to get her to eat. Anything that can take the edge off and make her more cooperative is a help.

I truly hope it does that for you. How and when do you double up if necc?

not sure. We only got a supply for 1 week and will see the consultant again on Friday for a review.

I am just so drained from the last few days. Lost almost half a stone myself (luckily I carry loads of spare so not a problem). I thought I am battle resilient after raising a DC with complex needs for 15 years but this is different. I think I just need to find a way to pace myself. But 2 DC with loads of extra support needs, a job and no family around seems a bit much now. I need to take stock. Something somewhere gotta give.

How do you guys find breaks or breathing space? I am either dealing with DC1, DD's anorexia, work or battle with DH. Argh 😤

Her heart rate dropped last night to 40, body temp to 35. 111 send ambulance, abnormal ecg. On Sat, all of these were still fine. We ended up in hospital and she spend the night on the HDU.

She is being put on a new feeding plan now, they will tube feed if she is refusing so will see how it all goes. but I think she is in the best place she can be.

3 weeks ago she was doing well and gaining weight and things escalated so quickly. I hope we can get the right support now.

It is scary @Curlyhairedassasin and I agree - I think she's in the best place. Has it given your 'D'H a sharp wake up call - I know you said he'd moved on a little after the session on Monday?

@myrtleWilson Yes, much more on board now, also agreed to the olanzapine yesterday which he really didn't want before.

Sending love to you and your dd curly. She is definitely is in the best place.

Sorry to hear her health deteriorated but glad she is now getting the right support.
It is alarming how quickly their physical health can deteriorate and glad you spotted the signs and got her seen.
You are right in the eye of the storm at the moment.
Let's hope this is a turning point for your DD, your DH and the support you are offered.

At least safe for now

At least safe for now

Yes it's truly horrible to be admitted (so many of us have been there) but in some ways reassuring to know that your child is safe.
Do you know how long she will be in for?
What's the outcome from your meeting on Monday? They obv gave pointers for you to know to check her heart rate etc.

NCTDN
on Monday, we agreed on Olanzapine and ramped up meal support but that went out of the window when things escalated that night (stone cold, low heart rate etc. I think I leaned more from reading on here than from the local ED clinic though low pulse was mentioned).

She will stay in for a couple of weeks at best and a few months at worst. Depending how things go.

@Curlyhairedassasin is that what the Dr's have said about anticipated length of admission? My experience was that hospital Drs focus on physical stability - once you're 'out of risk zone' they are keen to discharge as soon as possible - which from their point of view may be say 2 weeks, however our experience was the challenge there is without the right package of support for you in the community you end up ping ponging in and out of hospital (this is what happened to us) We had to be really firm about community support being right for discharge - you may yet need more of those pointy elbows!

Without meaning to be patronising - well done on powering through...

I think physically she is stable - sort of Her weight is not that low - above 80% hfw but the speed with which it is crushing down (currently 1kg per week) and her almost total food refusal make her a difficult case.

They said she needs to have a stable eating pattern. Unless that is in place, she cannot go. The ED community team are also regularly involved (probably also due to the fact that we have now 2 DC with complex conditions and no other support or family to help). I (or DH) have to be there for most mealtimes as feeding support so it will still take a lot from us but as least she is in the best place. I really would not take her back unless things have significantly improved. I think having a teen with complex needs and battling the system for years helps me here if that makes sense.

Well it sounds like you're dh had upped his support to which is good, though a shame things have to escalate to that extreme to get to that point. Please keep us updated.
Is the hospital far from home?

I'm glad your dd is getting the help she needs and the professionals are taking it seriously as of your dh finally Curly.

I would use this time to get as ready as possible for when she is discharged, read the Eva Musby book, join the fb group, start mentally preparing all the meals and snacks she will need when she gets home. I'd start the application for DLA as well incase it does come to needing to take time off work.

Hospital isn't too far, bout 6 miles. That's ok.

girlie, I am getting a bunch of books from a friend. Sounds like things are very hard at home too once discharged for many.

I am just tired and drained for now. Eating in hospital is not great so NG tube may come out tomorrow.

I have requested the DLA form this morning. So that is next on the list.

I meant, doc may get the NG tube Out and get it into DD. It's not coming out of DD's nose.

Hallo all.
I wondered if any of you could share how you prepare meals and snacks to the schedule. I really struggle to get every meal out on time. We make everything from scratch and before the ED possessed DD she used to help make meals. I am still working full time and not in a position to reduce my hours.

@SunnyFog I found bulk cooking and freezing helpful. My DD is vegetarian, so eats slightly different meals to the rest of the family anyway, so I'd make, say 6 portions of Quorn chilli, 6 portions of butter bean stew etc. and then defrost as appropriate.

Unless a miracle happens overnight, we are getting the NG tube tomorrow.

I guess some have been there. Can someone explain how this helps in recovery? I get the feeding aspect but wouldn't we be back to square one once it comes out? Or refeeding via tube change anything in the brain which makes it easier then to get better without tube?

We had NG because Dd was so weak that not only did the ED not want her to eat, she physically couldnt stay awake to eat and her heart rate was very low (like your Dd, ours was admitted because of scale/speed of starvation) and we faced ever decreasing circles. So she agreed to tube to allow her body to recover a bit but no it didn't help in recovery rather slowed a scary decline

How is your DD now, myrtle

@Curlyhairedassasin We've been there many times. It will immediately stop the physical decline, and, in most cases, will only be needed for a few days. For DD we also had a community care plan where if she missed a meal she had to go to the hospital for a top-up NG - which was a relatively effective incentive to eat for a while.