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

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melstevUK
http://www.irishexaminer.com/ireland/cork-family-protest-over-lack-of-funds-for-uk-anorexia-care-324651.html

Butterfly, I can't believe that d has not been transferred to a specialist facility in the UK yet.

How are you?  How is your d?

Hope you get results soon.  Do let us know how you are.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Torie
Butterfly, please let us know how you and your d are doing.  We get worried when we don't hear from you - hope things have taken a miraculous turn for the better.

Hugs,

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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floating
Hi Guys

The last few days have been an absolute nightmare.
My heart was so broken and anxiety levels escalated to beyond bursting.............


15th April 

Medical consultant at CUH wanted my D collected  Tomorrow as he said she was medically stabilised and was taking the NG out. She was 43kg highest weight in 8 months but over last 4 days lost 1kg. Therefore I was very concerned and only eating a sandwich and 2 weetabix plus bottles of fortisips.

16th April 2015

Family G.P put a stay on the discharge.

  • Peaceful demonstration took place outside HSE office in Cork.
  • petitions signed by members of public
  • Huge support from bus drivers, cars, public...lots car horns bleeping in support.
  • Radio stations publicise case and tv reporters interested
  • Local garage provide sandwiches/coffee to all protesters for free, bless them
  • Teachers from D school call by demonstration offering support
  • by 1.30pm HSE Representatives come out and say they have good news if we come in to talk and stop protest!!!!
  • Meeting scheduled for 3.30pm with promise of funding for treatment in UK without the E112. Gretta Crowley to attend and CAMHS IP Manager only
  • Meeting at 3.30pm. No Gretta Crowley but A solicitor!! a Professor and IP Manager. 2 hour meeting where they admit they have dragged out the last 10 weeks till my child turns 18. Tell us it was due to a legality with a court ruling between UK and Ireland. Letter given to us committing to funding BUT with clauses..........we had no Solicitor with us and the get out clauses were a concern. So we do not sign.

17th April 2015

  • Protest resumes
  • I meet Hospital Consultant who is discharging D home or back to the dreaded CAMHS unit. I agree to take her home at 7pm this evening. We go tell D. 
  • Our plight is aired on the TV.........o lord if D finds out we are in so much trouble!!!
  • Radio publicise again.
  • Solicitor now on board who says do not take D out this evening till we meet tomorrow and she sees the letter
  • OMG how can I tell my precious child who is excited and packed to go home???? pacing crying at home for hours. Hardest day of my life. Elder D tells her at hospital as I have a complete melt down and cannot cope leaving her at the hospital
  • D screams and 5 nurses have to hold her from running as she is so distraught......... I just want to go get her and stay awake all night inconsolable as do my two other Daughters. Nightmare.
18th April 2015

  • Meet Solicitor at 11.30am who advises us that D needs transferring before her 18th birthday. Funding promise letter from HSE needs tweaking as not transparent. Barrister advises they will contact HSE asking for immediate transfer to the UK or an application to the High court will be applied for. Advised to collect D from hospital to alleviate anymore trauma for her. D also now aware that something is going on as spotted info on internet.
  • We arrive at the hospital with a long solicitors letter stating the conditions we are taking her home to give to sister on ward.
  • For first time D is specialed 2:1..........yet they feel I can take her home alone with no meal plan!!!

19th April


  • My beautiful, wonderful girl is home and weirdly I slept for the first time all night in 4 months 
  • D trying really hard, no toilet trips after eating etc but We have seen this honeymoon period before....
  • Nutrition taken today:
9 am: 2 weetabix and 200ml of low-fat milk
11 am: fortisip
1pm: 2 bread, coleslaw, ham, no butter
3pm: fortisp
5pm: cup of soup, 1 bread with peanut butter
8pm: 200 low fat milk

Not sure of total calories but at a guess less than 1500 calories and she would not eat a thing more and thinks this is great. Tried hard but will not gain on this.....

Tomorrow protest will resume whilst I look after daughter. 
Much larger group of protesters expected
Will await outcome as solicitor will contact theirs

Thanks for caring everyone
A parent should never have to fight for treatment like this............good grief but my child must get a chance at WR and get on the first step of the ladder 

xxx


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Iaminspired
WOW Butterfly!!!!!!!!!!!!!!!!

I am speechless with what you have had to do over the last few days.  I am so glad you have a lawyer looking out for your D's best interests and your own.  And so much support with public protests!  I am in awe of what you have been doing!!!!!!!!!!!!

I'm so sorry this has been so difficult for you.  I truly hope, with the legal, public and media pressure you are currently putting on, that transfer will happen very, very soon.

My heart goes out to you.  I am sending you strength and love and healing.  Prayers for you and your D.  

I think we'd better start Round 7 tonight. 

Colleen
Colleen in Ontario

Single Mom to DD#1 (20), Autism Spectrum Disorder (diagnosed at 16 1/2), Generalized Anxiety Disorder, Social Anxiety, Panic Disorder
and DD#2 (17), In solid recovery from Restrictive AN, Managing Social Anxiety, Generalized Anxiety Disorder, Panic Disorder, ASD, finished with IP and FBT, successfully managing school and life

If, at the end of my days, I can say I saved the life of not only my child, but helped to save the life of someone else's child as well, then I have lived a good life.
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FaithKeepsMeGoing
I am so sorry about how hard you've had to fight for your d.  No one should ever have to go through this.  I wish I could have been there to join the protest . . . not a quick trip across the pond.  But I am praying and sending support and hugs!

The Irish tell the story of a man who arrives at the gates of Heaven and asks to be let in.  St. Peter says, “Of course. Show us your scars.”  But the man replies, “I have no scars.”   St. Peter shakes his head and says, “What a pity. Was there nothing worth fighting for?”

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PurpleCatUSA
You are doing amazing things for your daughter.  I am proud of you--you have found such courage in the face of adversity. We are there with you in spirit. 

It is no wonder why you haven't been on to update.  But, please update as you can.  We all worry so much about you and your daughters.

Take care,
Purple Cat

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Doitagain
Butterfly - well - you know those weird TV shows where they nominate People of the Year - if there was one going on now I would nominate YOU! You are taking on a terrible duplicitous system and you are beating it. - disgraceful as it is that you have had to resort to these measures you are a total hero. The fact that it almost has a life of its own now is probably a good thing. I am so relieved that you have a solicitor on board who has instructed a barrister. You wonderful elder girl deserves huge applause too for taking the job of telling your daughter .

I know how horrible this must be for you and I send virtual support to you all. Try to hold on to the thought that many mothers and fathers on here have stood terrified with their child whilst they were sectioned against their will under the Mental Health Act - it's not the same as your situation I know but my point is that parents do what they have to do to save a child's life. If this was another illness - you would have no doubts but Anorexia can fill us with ever greater doses of uncertainty , doubt and fear and by the time we get to where you are now we are on our knees.

Everything you have done and continue to do is right - you are strong and your lovely daughter is very very lucky to have you. The day is coming when she will look back at this and tell you that herselfxxxx
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Iaminspired
Round 7 emails have been sent to all the usual suspects.

Please post here or email me if I missed you or if you would like to write for the first time.

Fingers crossed!

Colleen
Colleen in Ontario

Single Mom to DD#1 (20), Autism Spectrum Disorder (diagnosed at 16 1/2), Generalized Anxiety Disorder, Social Anxiety, Panic Disorder
and DD#2 (17), In solid recovery from Restrictive AN, Managing Social Anxiety, Generalized Anxiety Disorder, Panic Disorder, ASD, finished with IP and FBT, successfully managing school and life

If, at the end of my days, I can say I saved the life of not only my child, but helped to save the life of someone else's child as well, then I have lived a good life.
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floating
Doitagain

D was screaming at the hospital...................it was unbearable, horrific, she rang me

Can you imagine 5 hours previous I had told her we are going home and I will be back to collect you. It was the worse moment of my whole like to let her down in this way........it goes against every grain of our being a parent

But when you just mentioned parents on here having to stand by terrified as their child was sectioned it helped to put it into prospective.

This ED monster is so evil 


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floating
Faithkeepmegoing and purplecat

Thanks for kind messages

A mother helping at the protest said to me" you are so strong, I do not think I could do this if it was my child"

I told her I use to think the same when I saw mothers go through such difficult times with sick children but it is not being strong........you do it BECAUSE YOU HAVE TO not by choice.

Every parent on here amaze me. I have barely began this journey, only served 8 months!!! you lot are the heroes......hope I can stay the course as long as all the parents on here xxxxx


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floating
Colleen


You deserve a ATDT medal for your advocacy work and the support you give to others as well as cheeky Torie and all xxx


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floating
melstevUK wrote:
http://www.irishexaminer.com/ireland/cork-family-protest-over-lack-of-funds-for-uk-anorexia-care-324651.html

Butterfly, I can't believe that d has not been transferred to a specialist facility in the UK yet.

How are you?  How is your d?

Hope you get results soon.  Do let us know how you are.



Melstev

Thanks for your concern.........appreciated xx

I am hanging in by a thread but still sane -ish

A family friend said 2 days ago the life has gone out of my eyes.......whatever that means!!

Results will come hopefully soon xxx


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Doitagain
I know Butterfly - I really do. It's monstrous the whole thing - you just can't believe it's really happening sometimes - like being part of a very bad movie. But you will get there. My D is now at a pre-anorexia weight and I never though we'd get here. But it's very early days so I am assuming nothing having been here once before. We have good days more than bad days but I can always see IT, the demon ED, just shifting around below the surface. One day at a time.x
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mumto3
Glad you are still sane - you have to fight still - you have to sound sane to the doctors and the public.  Keep up the fight, both with refeeding D and finding a better place for her.  

Can you supplement the milk with a tiny bit more fat each day?  At least she's eating three meals and three snacks - that's a great start!  Keep going, we are here for you.
worried mom
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Bontoplen_USA
I cry when I read your posts, if I were to win the lottery tomorrow I would pay to get your D to where she needs to be.I am in awe of your strength. I will pray for your family,I am so sorry.
Bontoplen
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joysomeday
Butterfly, you are sooooooooooooo awesome!

Letters sent out, auto replies back from Delaney, stating unit too busy and emails unmanned, and one other stating out of office until Wed 4/22.

Hang in there a bit longer, hopefully they will be shamed, and forced to provide your d with a transfer ASAP.

You are one amazingly strong determined mom.  God bless all of you.
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Torie
Wow, Butterfly - you are one heck of a force to reckon with.  No way does Ed have a chance.  You will get your d back - so so sorry you have to fight a terrible healthcare system on top of Ed, but you have shown that you are stronger than both!!

Please remember, it does get better!  You will get your d back, and one day she will thank you for being such a superhero.

I hope you're in the process of getting another night's well-deserved rest.

Hugs,

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Torie
Not sure if this was already posted or not:

http://thecorknews.ie/articles/family-campaigns-life-saving-help-18487

Way to go getting the attention of the press, Butterfly!

xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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iHateED
Sending more strength and prayers your way Butterfly. You have done an incredible job so far and your d will recover with your determination. Stay strong.
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OneToughMomma
Float like a Butterfly, sting like a Bee! 

I've just written for round 7.  My mom and I had a little cry for you and your beautiful D. It's so not fair!!!

Please know that we all care about you and are worried for you and your D.  I'm sure I speak for most of us when I say I'd love to reach through the internet and hand you a cup of tea and take the reins for you, just for an hour.

No need to reply, just keep swimming.

xoOTM
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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MumTo2UK
Butterfly, I am in complete and utter awe or you... and complete and utter disgust at what you've been made to go through! I truly hope your solicitor takes them all to court for prevention of care! I'm truly astounded that it has had to come to this for your precious daughter to get the help she needs. [frown]
Mum of 17 year old daughter with AN seeking guidance
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sowego
Hey Butterfly, 
I have been thinking about you and your Ds and hoping there was something positive going on. You are absolutely unbelievable, a trojan mother.
I am so so disgusted you have had to go through this. I am heartened by the support from the people of Cork for you all and that they have made their voices heard. Not to mention the amazing Colleen here. I have sent off the latest emails. I am so glad you have a solicitor working for you, its an impossible system to fight on your own. 
I wish I could be doing more for you, my own D is teetering on unstable and is taking huge amounts of work to keep her somehow on the rails. 

I will keeping you all in my thoughts.
Best wishes.
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K63
Hi butterfly, I have been following your story , it's incredible that you have to fight so hard to save your daughters life. All the literature says that it's the most serious of all psychiatric illnesses and there is no unit in Ireland to care for them. My daughter is around the same age as your d , we are having a difficult time since discharge . You are amazing .
Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
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Boysmum
Oh my word, what you have all been through. I hope every time I log in that I will see a message from you saying you have got a place in the UK xx
13 yr old son diagnosed April 2015 with Anorexia.
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FaithKeepsMeGoing
I've sent off my emails and got the same auto-replies noted above. Just praying that your daughter will be transferred where they can help her, and sending love and support to you, Butterfly.  You are a strong, loving, wonderful mother, and your daughter is so blessed to have you as her advocate.

The Irish tell the story of a man who arrives at the gates of Heaven and asks to be let in.  St. Peter says, “Of course. Show us your scars.”  But the man replies, “I have no scars.”   St. Peter shakes his head and says, “What a pity. Was there nothing worth fighting for?”

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