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.

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EndofTether
I am literally there - at the end of my tether.

D (aged 12)was diagnosed with AN on 23rd April 2018 and was admitted as an emergency to our "local" hospital (80 miles away - we live way out in the sticks!) at 70% weight for height, was seen by CAMHS and put onto a refeeding programme.  23rd May we were discharged for "home hospitalisation", with weekly visits to CAMHS (80 miles away) for support and FBT. Either my husband or me stayed with D in hospital 24/7 for all that time, with the other one holding the fort at home with the other children, one of whom was sitting final exams.

Skip forward to the beginning of July - almost there with 93% weight for height - with huge hiccoughs in between with "anorexic episodes" at meal times involving much screaming, thrashing about, lashing out, throwing of food, foul language - and D has chosen to live with a relative only 2 miles down the road and doesn't want to see either me or Dad. 

Local Social Services are backing D because she is 12 and will not make her come home against her wishes.  She is losing weight again as the AN isn't being challenged (she is being fed her "safe foods" in "safe quantities" and self-harming has escalated from gouging skin with fingernails, to using a stanley knife blade and stealing and hiding knives.

Advice please - from your collective experience, will D's cognitive functions still be impaired by the AN?  Any advice on what my next steps might be?  Completely at my wits end!
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Enn

Hello and welcome to the club no one ever wants to join. 
You have done well to get her into treatment and at 93% weight that is great. I am so sorry for what is happening right now. Has CAMHS spoken with Social Services to teach them about ED. Do you have legal advice and support. It sounds part of the illness to be honest, that she is fighting you and your H. She is 12 and you have legal custody, right? You and H have the power, how did she end up with the relative? Sorry, don't wish to be confrontational, just wishing to understand how that could have happened.

Is your FBT team still involved? Where are you located? 
As for the cognitive issues, my D just got better with WR and more time and more food. Are you sure is she is WR? My D required +++ more weight to see her brain get better and we are still working on it at 10 months after WR and 10 kg more than the first target weight. Please keep hope. Ask all the questions you have. There is a wealth of information and experience here. We are all ears, so ask away.
XXX

Food+more food+ time + love+good professional help+ ATDT= healing---> recovery (---> live without ED)

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
Welcome to the forum, sorry that you have had to find your way here. It sounds like you were heading in the right direction until your D ended up with this relative. As others have said, that is an enormous difficulty and not sure how it happened. 

Have you spoken to the relative and informed them of what is happening? Clarified parental rights? It would seem the best plan to me would be to get the relative to send her straight back to you - the question is how to get that to happen. WOuld getting her CAMHS team to speak to them be of use? Getting them to contact social services? 

It sounds to me as though social services is enabling your D's illness. She is too ill and too young to be able to refuse treatment yet this is what they are permitting. Is there a legal recourse?
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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ValentinaGermania
"Local Social Services are backing D because she is 12 and will not make her come home against her wishes."

At age 12???? I cannot believe that!!!
Do they know that she has a severe and life threatening disease?
Do the relatives know that?

No words for that.
Tina72
Keep feeding. There is light at the end of the tunnel.
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Hibiscus
Hi end of tether,
sounds like you have been having a rough time. Your D currently has a mental health condition ( not permanent but very real) as a result of food deprivation and cannot make good decisions for her own wellbeing( let alone her age) . People over 18 can be scheduled and forced into treatment. Sounds like she is avoiding treatment with the relative. As you pointed out, She is not safe there due to weight loss and escalation of self harm. It is time to make a stink with social services, mental health services or whoever is relevant in your community. Your D needs appropriate care either with you or inpatient treatment. I know you know this. Is there a local eating disorder association where you can seek advice, support, information ? Surely your FBT clinic should be able to communicate with social services and advocate for your D s health!

Be strong and hang in there.
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EndofTether
Hi

Thanks to all for the messages of support.

D went to the relative's home so that H and I could have a couple of days' respite as we were beginning to struggle with a serious lack of support. Relative is aware of D's AN and had visited a couple of times when we were hospitalised.

D has made allegations of cruelty against H and me - like making her sit to the table until she has eaten all her food, telling AN that we don't want it in our house (whilst reassuring D that she is much loved and wanted), using the "shit sandwich" technique (We love you very much, but we hate it when Anorexia makes you ......, but we love you very much and want you to get better) and relative then got the social services involved and has exaggerated (if not down-right lied) to try to get permanent control of D!!

The social services seem to think that externalising the AN and treating it as separate from D amounts to emotional cruelty - even though that's the approach sanctioned by CAMHS, who appear to be back-pedalling wildly!

So that's where we are at the moment - under investigation by social services for emotional cruelty, facing a Child Protection meeting tomorrow, and still separated from D.
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Enn
I strongly suggest you get a lawyer. 
I am so sorry about all this.
With you in spirit
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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KLB
Oh my goodness. This sounds horrendous. I can't imagine how difficult this must be for you. Sending positive thoughts.
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melstevUK
Hi EndofTether,

Really sorry for what you are going through.  But well done for all that you have achieved so far.  

I note that you are in Scotland.  CAMHS and Social Services should really be in contact because under GIRFEC legislation there should be much more coordination.  

Why are CAMHS back-pedalling?!  They should be advising Social Services about the illness!  

I suggest speaking to your CAMHS team with your concerns and, if necessary, calling for a multi-agency meeting.  You simply cannot have Social Services undermining you, who know absolutely nothing about eating disorders.  Your GP could be involved as well.

Feel free to email me separately with the health authority you are under and for any more advice.

"The social services seem to think that externalising the AN and treating it as separate from D amounts to emotional cruelty - even though that's the approach sanctioned by CAMHS, who appear to be back-pedalling wildly!"

If you have relatively new clinicians - and often there are really young doctors in psychiatry who are not even trainee psychiatrists but junior doctors and you would never know or be informed (I found this out when my d was under services in Scotland) they may well back down when presented with notions of 'Child Protection'. This really needs addressing because nutrition and weight gain have to come before everything else - however difficult your d will find this - and all the agencies need to get on board and have the illness explained to them.

This is a horrific situation - and really should not arise.  I would kick up a real fuss with your CAMHS team and request a multi-agency meeting straight away.  You could ask for her Guidance Teacher from school to be involved too - because he/she should also know what is going on.  


Believe you can and you're halfway there.
Theodore Roosevelt.
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ValentinaGermania
Please think about calling Eva Musby. She has so many connections, I think she might be able to give you good advice what to do.
This has to stop asap.
Tina72
Keep feeding. There is light at the end of the tunnel.
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Mamaroo
EndofTether wrote:

D has made allegations of cruelty against H and me - like making her sit to the table until she has eaten all her food 


This is how we grew up. How times have change. I do think that making one sit until all food is eaten is a first defense against eating disorders.


EndofTether wrote:
 telling AN that we don't want it in our house (whilst reassuring D that she is much loved and wanted)

The social services seem to think that externalising the AN and treating it as separate from D amounts to emotional cruelty - even though that's the approach sanctioned by CAMHS, who appear to be back-pedalling wildly!

So that's where we are at the moment - under investigation by social services for emotional cruelty, facing a Child Protection meeting tomorrow, and still separated from D.


I've attached a pdf from the Victorian Centre of Excellence in Eating Disorders about externalising the eating disorder. Good luck with your meeting.
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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EndofTether
The meeting's outcome was that D was not placed on the Child Protection Register. The matter is now being taken to a formal hearing.
In the meantime, D has to stay with the relative while a temporary foster placement is found for her.
CAMHS informed the meeting that, at almost 93% weight for height, she is WR and so her cognitive functions are normal. I simply can't believe this!
At no time in the meeting were we given an opportunity to speak.
Solicitors dealing with Child Protection matters are very hard to come by, but we have found a couple who we will be seeing next week.

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Foodsupport_AUS
I am so sorry that you are having to deal with this. No words can express how hard this must be for you. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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EndofTether
@Mamaroo

"I've attached a pdf from the Victorian Centre of Excellence in Eating Disorders about externalising the eating disorder. Good luck with your meeting. "

I can't find any attachment to point me to the pdf?
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ValentinaGermania
"CAMHS informed the meeting that, at almost 93% weight for height, she is WR and so her cognitive functions are normal. I simply can't believe this!"
So do I - my d is 1 year after WR and I would NEVER say her cognitive functions are normal. Better, yes, at about 90 %, perhaps, but not at all normal.
Who is behind CAHMS? The next higher instance? Would it help to contact a politician or someone from NHS? Contact Eva Musby, she has really good contacts to the higher instances I think.
This is not right and this should not be true. It should not continue one single day.
I am with you in my thoughts. Do not give up. Your child is lost if they do not help you.
Tina72
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
I am not sure but this may be the pdf that mamaroo was referring to http://www.ceed.org.au/sites/default/files/resources/documents/Externalisation%20from%20the%20Eating%20Disorder%20August%202016.pdf
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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NELLY_UK
Wow, this is a mess.
Have you mentioned Every Child Matters the paper drawn up a few years back that ensures agencies all worked together including school, GP , CAMHs, social services?
They are clearly not following that set of rules. The govt had a HUGE public enquiry into the death of Victoria Climbie and re wrote the rules.
It might help to mention it, when I did everyone jumped up and down for us.
Get a second opinion from someone like Maudsley as well to back up the evidence.
What about your other children? Are social services concerned about them as well?
Can you get an official advocate from mental health charities? Perhaps MIND? They can be useful as an impartial other set of eyes on this supporting you.
I needed one of them, just to ensure there were no misrepresentation by anyone- CAMHs were serious liars protecting their backs in our case.
Social services do not get it. Even some GPs don’t get eating disorders. They simply don’t cover it in their training sufficiently.
You need a psychiatrist to be on your side.
Who restored her weight?
Who enabled her to be treated for her serious illness?
Who took her to appointments 80 miles away and juggled work and home to get her the help she needed quickly.
If they side with your daughter and lay any blame at your door for anything other than being the Best Mum and Dad in the world, her and her siblings will struggle to get past that.
I am speaking from prior experience.
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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melstevUK
End of Tether,

Which health authority are you under?  Can you please email me and let me know as I know a lot of clinicians around Scotland who can maybe intervene.  This is really really dangerous practice and there was a case of twins who this happened to back around 2007 in Scotland  I believe.  There was a total misunderstanding of eating disorders and the children were put out to fostering.  Foster parents will do more harm than good.  I cannot believe that this is happening to you.

Also, please email Eva Musby as recommended above - she is hugely respected and influential in Scotland and she will come to the hearing with you.

I am utterly horrified that this can be happening in Scotland right now when there has been so much change for the better.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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melstevUK
End of Tether,

Here is the case that I referred to above.  

I can't make hyperlinks unfortunately, but this is where I found the newspaper article about it.  It happened in South Lanarkshire in 2009.  I googled 'Scottish twins with anorexia nervosa taken into care' and it came up with this article from the Daily Record.  I think the twins eventually ended up in the Huntercombe Hospital in Edinburgh when my d was there, which is how I heard about it.

http://www.dailyrecord.co.uk/news/scottish-news/exclusive-mums-agony-as-anorexic-daughters-1038269.

It is worth printing off to show that these people involved with your d are making exactly the same mistake again.  Shocking in 2018 to think that this can happen.
Believe you can and you're halfway there.
Theodore Roosevelt.
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evamusby_UK
Dear EndofTether, I've just found your story. How horrific, I am truly sorry you are going through this.

I have links with most of the CAMHS/Eating disorder units in Scotland, so do get in touch. Most of Scotland's services are now very good, so I'm wondering if you're in one of the ones I never hear about, and might therefore be backwaters. The ED specialists are well networked and so if you email me names of those already involved I could have a think who else might help.

Scotland uses FBT (trained directly by James Lock), so externalisation is very much the done thing. There are of course nuances on how we use it with our kids, as it doesn't always work so nicely and some hate it, but it's certainly approved of officially.

Love
Eva
Eva Musby, mother, author, produces lots of resources for parents at https://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
[comp]
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ValentinaGermania
Hi,
I was just thinking about you and how you are doing. Any progress?
Please keep us updated if you have the power to do.
Tina72
Keep feeding. There is light at the end of the tunnel.
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EndofTether
Hi Tina72

No news, nothing moving, nada, zilch.  40 days since D was removed from our care by the Social Worker and we're still fighting to try to get her back.  Feeling somewhat discouraged, but will keep battling on until it's over.  Trying a new avenue at the moment to see if anything gives down the mental health route.  We have fought and kept her off the Child Protection List, but are now facing a Children's Hearing at a date to be decided.

Still at EndofTether!
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Enn

So sorry to hear this.
"Trying a new avenue at the moment to see if anything gives down the mental health route." 
I hope this is helpful for you. 

All my best! 

XXX

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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