F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Need to talk with another parent? F.E.A.S.T. parents offer peer support via:

Searchingsilverlinings
Hello dear people

I don't know where to begin.

So back in April D stopped eating again. She was Sectioned and sent to Rhodes Wood (Rhodes Farm relocated and renamed). They were familiar with her as she had been there for a lengthy IP in 2014-2015.

It wasn't a great admission. She put on a couple of kilos in the seven weeks she was there, but her consultant was ill for much of the time she was there, and their relocation meant things were all over the place. D Self-Discharged. Something everyone knew was coming because she told them that as soon as she hit 90% weight for height she was out of there.

She worked hard to eat upon discharge and she put on more weight. But she was super depressed. She said "something snapped" when in hospital, and we struggled upon her discharge to get her to leave her room, even to shower.

CAMHS was also a disaster.
After ten days from her discharge we got an appointment where we were basically told they couldn't help her and were referring her to an ED outpatient unit.
Eventually after a month - CAMHS discharged her and we were given an appointment three weeks forward at the ED unit.
She didn't want to go, but she went to that appointment in July. She knew the consultant from her first Rhodes Farm admission. She seemed positive almost - as the consultant is firm, and D knows she can't mess around with her. The next week however we got a call to say that the consultant was leaving.
Ever since then D has resolutely refused to engage, and her eating has got less and less. She says "what's the point. There is no consistency. People just leave".

She wont take medication (we have a prescription for fluoxetine).

I have never seen her so depressed. She barely leaves her room, barely showers.

I just am at an absolutely loss.
I am exhausted. I am out of ideas.
Weight wise - she is about 8th percentile (which is actually around her historic norm - she used to travel the 9th centile as a child).

There is no plan. She turns 18 in April and refuses to see adult services (which is on offer).

I just see that she will end up Sectioned again, and she is so angry about the last one...

No point me babbling on... but just no where to go. Family offer sympathetic noises but no tangible help on offer.
Quote
EDAction
Dear Searchingsilverlinings,

I'm sending a huge virtual hug to you across the pond.  It sounds like you are feeling at rock bottom my friend.  Hold on.  As one of our Forum friends says, I'm at the end of my rope, but I tied a knot and I'm hanging on.  Hang on my friend.

Your D says there is no consistency; that people just leave.  It's just not true.  I know she is referring to the consultant she liked, but all people don't just leave.  YOU have not left.  YOU have always been there.  YOU are her rock of consistency.  YOU are her hero (although sometimes you might want someone else to take over the job for a day or two).

Others will be along with more support.  But in the meantime know that I am thinking of you and your D.


DD diagnosed with anorexia at 14; FBT at home with the help of psychologist and medical dr; 3+ years later and doing well (knock on wood)
Quote
MarcellaUK
sending virtual hugs too. It's soo difficult when patients are adults, or nearly so. It's also such a horrible thing that staff do seem to come and go but EDAction is right, not everyone comes and goes, YOU have been with her all along and will continue to be so.

If she won't see adult services then I suspect you won't be able to make her, but I hope you can insist that someone monitors her medically and ensures that she does not suffer dangerous consequences of her illness. Her GP is obliged to provide her with appropriate care and for her I would have said that appropriate care would be regular review, using such guidelines as the MARSIPAN Guidelines and encouragement to engage with the adult services at the very least
Fiona Marcella UK
Quote
hyacinth
So sorry to hear your D is having such a hard time. Are there other avenues you could approach? Contacting the South London and Maudsley - they have an intensive day programme that has DBT elements? Or maybe finding someone in the private sector, if that is an option.
Just to check - you say that she has tracked the 8-9% percentile, which is very low, but you also say that she reached 90% weight for height. I believe that usually weight for height is calculated on a 50% percentile. Anyway, although your D has always tracked a low percentile, maybe she needs to be much higher?
I do hope you can find some good support soon.
Quote
mjkz
Quote:
She says "what's the point. There is no consistency. People just leave".


Yes, people do leave.  That is just part of life.  The people she can count on, really count on though have not left, namely her family.  The point is to be healthy because when you are healthy, you are better able to cope with people coming and leaving.  Getting sick does not make people stay; it actually has the opposite effect.

I suffer from depression and always have.  People leaving is so hard when you are depressed.  People try to say encouraging things but I can say from experience both depressed and healthy that when one is healthy, things like this do not derail your entire life.  They only derail your life when you are sick because your world is so narrow.
Quote
ooKoo
Searchingslverlinings,

I am sorry that you have been on receiving end of such inconsistent care.  I do feel your pain to a certain degree.  Is there anyone at the Ed Outpatients or even back at CAMHS that you could reach out to and explain the difficulty to to try and rebuild any sort of relationship between your D and any service? 

Not sure if it will help you, but I very much took the lead with my D.  ie in her eyes, I was in charge, and anyone else was working on my instruction.  I found this helped shift my Ds mindset a little.  My D has also self discharged last year, and I used that time to step up and "take control"  - okay, so I was faking it but it worked for us - and it also meant, that when a professional said something silly (as they frequently do) I was able to override any potential damage done.  It also meant that she trusted me with refeeding.  I weighed everything.  To my D this meant that I was feeding her what she needed, and no more - which may sound the wrong way around, but we got her to WR using this method.

I hope your D improves soon. x
UK - South East

19 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions. 
2017: CAMHS CBT. WR, dropped out of 2 different colleges and started an apprenticeship.  Started having grand mal seizures and was diagnosed with epilepsy in Nov 2017. Sacked from job because of this.  Tribunal ensued.
2018 - doing a Psychology degree through Open University and working in retail to pay her way in life. Relapses with eating disorder in June 18 and Nov 18 😢. 

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
Quote
iHateED
Sending you a hug across the miles.  I can hear the desperation in your voice and I'm so sorry.  Is there anything good or positive in her life that she likes right now?  If there is, maybe we could brainstorm some ways to keep them going.   Does she have any interests or hobbies?  Is she going to school?  

Hang in there and stay strong.  Your D needs you to keep fighting for her until someday she will be able to fight for herself.  Recovery is possible. 


Quote
Blommie
Hi, I a so sorry about where you are at. How has the week been? Sending hugs
D officially diagnosed April 2014 at age 13 after being hospitalised on a medical ward due to severe restriction. Been refeeding at home, doing FBT through CAMHS. Living life moment by moment
Quote
floating
With you on EXHAUSTION , this illness really takes it's toll in so many ways...........

Absolutely awful that they can self discharge........mine does it at 12 bmi so annoying that this can happen
There is no blame and I am so sorry she has done this just as she was nearly WR

18 IS A DREADFUL age when ED is at play..........so keep pushing for her to engage with a team

You have been doing this a longtime and I truelly hope your journey of recovery is all uphill from now on........big hug xx


Quote
deenl
Hi searchingsilverlinings,

Just thinking about you and sending hugs.

Warm wishes,
D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
Quote

        

WTadmin