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Ellesmum

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Reply with quote  #126 
How can you help? Bring gin 😀
Honestly, just being able to sound off on here helps.

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Ellesmum
tina72

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Reply with quote  #127 
I can´t pop around with a glass but I would love to, believe me [biggrin].
But we can offer you more than just an open ear (that is much, I know). We can help you with ideas how to manage problem 1,2 and 3 to get through the day.
Where are your biggest problems at the moment? Is she eating with you? Is she maintaining her weight or still losing? Can you distract her? Can you talk to her or does she close you out completely?

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Ronson

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Reply with quote  #128 
Tina72 - I so admire you - you have battled through with your d and are always willing to spend time to help others x
tina72

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Reply with quote  #129 
No thanks for that, please. All the others were here for me in my dark days and I am sure you will do that with great pleasure for others soon (in fact you are doing it even now because you take a lot of time to reply to others I see).
And please remember: you are my social contact. Joining in here is my possibility to "speak" to some adult people of my age that are not hubby and parents in law...[wink]

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Ronson

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Reply with quote  #130 
Yes it keeps me sane too. To know it is not us alone and to know it can improve. Tonight d is going out. With friends and I am pleased. She has done her hair and make up and looks happy. She leaves in an hour so fingers crossed she can go and no anxiety x
tina72

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Reply with quote  #131 
That is great! It is a good sign that she cares for her appearance and that she socialises again. I cross all my fingers! Keep us updated how it went!
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Ronson

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Reply with quote  #132 
Thank you. Yes she still has a lot of care for how she looks but hides in the big jumpers etc. X
Ellesmum

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Reply with quote  #133 
She's had dinner, pasta, garlic bread and fruit. Next is cereal and soup before bed. Just had an epic meltdown yet again but she'll sleep after this. Thanks for being here but I wish none of us had to be x
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Ellesmum
Ronson

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Reply with quote  #134 
Glad she is eating though. Take care and try to get a good night sleep x
Foodsupport_AUS

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Reply with quote  #135 
Great job on getting more food into your D. Has she been having regular GP assessments whilst waiting for CAMHS?

It sounds as though your D is nowhere near ready to go back to school. For return to school with an ED I would suggest that you will need to have made a number of arrangements with the school. This would include an arrangement for supervision of meals - you coming in or them supervising, flexibility about arrival and leaving times - if she hasn't had breakfast she can't go to school, she may need appointments and check ups, arrangements about the stress of dealing with homework, exemptions for sports/PE. Just sending her back to school even if she will go is a recipe for failure. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Torie

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Reply with quote  #136 
Ellesmum, I feel like we haven't done the best job helping you figure out what your d needs and how to get there.  She really needs to be gaining - the faster the better.  Do you know what is happening with her weight?  I can never tell if she has a real meal or only a part of a meal ... is that something you would like help figuring out?  Or figuring out how to up the calories to drag her back to health sooner?  This forum was such a lifesaver for the Torie Family in helping sort out those types of things.  Please let us know how we can help.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Ellesmum

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Reply with quote  #137 
Ok, so she is eating about 1000 calories a day, here mental health is shocking and declining daily.  She can't get an assessment for 3 weeks and the GP in the UK (I know some of you are overseas) can neither prescribe anything or hurry things along although they are very supportive and see her on a fairly regular basis.

I'm stuck at the moment, I agree she is not ready for school but on the other hand feel she should do the first day (I'm not sure) she is very unwell but it's more her mind than body. I am fast losing my own grip having been fortunate enough to enjoy robust good mental health most of my life but there is only so much I can take.  We talk, are open and she trusts me (to a point) I am nearing my breaking point and up until now wanted to do all I could to avoid hospital - now I feel there may be no option and I can see us in the emergency department tonight tbh - ;last night she was punching herself, swearing at me, screaming, crying and in general distress. I know we all go through this but there has to be a point when a parent simply cannot cope any longer. 

Today she's had cereal, yoghurt and a sugary cake - she's going out with a friend (they are few and far between these days) and promises to eat while out - so can I trust her? I don't feel she is well enough to go but do I annoy her friend and isolate her further (I think I am still holding out for a miracle breakthrough) 

Tonight is the start of X-Factor so I hope she can mindlessly munch though that (couch picnic)  

Meanwhile, my house is a tip, my business needs lots of work and I am exhausted - My mind is starting to go to dark places.  I wish I could go back to the start, I wish I had seen this coming - only a year ago she had a bunch of friends, was never around or if she was it was with a group of friends. Top of the class and popular with it - how life has changed.

Sorry this is a mega vent, I am just so sick and tired of this appalling illness, scared and confused and just crumbling - If she would eat a banana before going out I'd be happier - CAMHs on the phone try to give me nutrition advice <hollow laugh> Jeez if I could get her to eat cheese and bread and pizza would I not? That's the whole point!!   

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Ellesmum
tina72

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Reply with quote  #138 
Hi Ellesmum,
please do not apologise for venting, this here is the right place to do that.

"Ok, so she is eating about 1000 calories a day, here mental health is shocking and declining daily."
So this is way too low to go to school. This is just enough to stay alife and stay in bed. So first thing is to figure out how we can help you to get more calories into her. Can you tell us what she is eating through the day so we can give you some ideas where to sneak calories in?

"She can't get an assessment for 3 weeks and the GP in the UK (I know some of you are overseas) can neither prescribe anything or hurry things along although they are very supportive and see her on a fairly regular basis."
It will not help you or her to wait for anything because CAMHS will not get her to eat something and the GP cannot prescribe anything that will make her eat so at least all is on you. If you want to avoid IP you need to get more into her. She does not need to be compliant about that. Does she want to go to school? Can you use that as incentive? Such as "you can go to school after finishing this breakfast"?

"last night she was punching herself, swearing at me, screaming, crying and in general distress"
This is a normal ED reaction. Try to stay calm and wait until it is over. Show her compassion and keep her safe. Put away everything she can use to harm herself or you.
"I know we all go through this but there has to be a point when a parent simply cannot cope any longer."
That is true and only you can decide that. But you need to decide that now. If you want to avoid IP you need to fight that bastard at home, no matter what it costs. If you think you cannot cope with that (and I would understand that because it is very hard) you need to get her into IP because the way to ER is very short. She needs to eat either at home or in IP.

"Today she's had cereal, yoghurt and a sugary cake"
Is it cream yoghurt? Can you sneak in some rapeseed oil? Sugary cake sounds great, that would be on fear food list at the beginning here.

"she's going out with a friend (they are few and far between these days) and promises to eat while out - so can I trust her?"
NO. Food that you have not seen being eaten is normally not eaten.
"I don't feel she is well enough to go but do I annoy her friend and isolate her further"
You do not need to isolate her further but you can set rules. "You can go out with your friends after you have eaten xy. Life stops until you have eaten. Then I will even pay for cinema"...and a banana is surely not enough. Forget all fruit and vegetable...

"(I think I am still holding out for a miracle breakthrough)"
This will not come. Sorry to say that but waiting for that miracle breakthrough took precious time here and did nearly cost my d her life.

We all wish we had seen it earlier. We all wish we could go back. But it is never to late to start some change. You can put your big girls pant on and say "tomorrow I will start to fight that bastard out of my house". You "just" need to dare that. You need to trust in yourself. You can do that.

Tina72


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d off to University now 2 years after diagnose, still doing FBT and relapse prevention 
Hibiscus

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Reply with quote  #139 
Hi ellesmum, you are doing an amazing job getting your daughter to eat with absolutely no help! Well done you. This is sooo hard, and yet you are still getting her to eat something. The house doesn’t matter, but you do. What can you do for yourself to bolster you? Besides a glass of gin, do you have friends and family around who can help?
I know it is hard, but I think u need to increase her calories ASAP. Can you use school as motivator for her? I.e ‘ to go to school you need to eat a, b, c, d ( lying now) I have spoken to dietician who says that until we have appt you need to eat this being 3 snacks plus 3 meals. Maybe you are doing this already, my apologies if u r. Try to add sneaky calories- butter, cream, oils , full fat cheese and milk. Lots of carbs. My d won’t eat pasta or rice ( so good on you) but I make her eat bread/ toast when she won’t as I want her to have a visible carb with meals like curry and give a bargain point to reintroduce rice/ pasta etc. lots if people have found smoothies a great way to add calories.
regards school I understand how you feel about the first day, but she will burn a lot more calories at school and there is a solid chance that she won’t eat recess or lunch. My d won’t and I go to school every lunchtime to make sure she eats. Maybe u could contact school or if u leave a message they will get back to you so I can look at ways they can help support her?
I am sure that lots more people will have advice but wanted to respond as I saw your post.
Love from Australia, hang in there

Hibiscus

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Reply with quote  #140 
Sorry just thought about her medical status, has she been checked out for her health? This may be a path through the hospital, my d did inpatient through local paed ward
tina72

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Reply with quote  #141 
I just saw you wrote she had soup before bed yesterday. Soup is a very good thing to sneak calories in. We had a wonderful recipe for califlower soup with double cream and cheese meltet in it. Do you think this is worth a try?
Another idea to get more into her on a small footprint is Benecalorie. These are small containers of 44 ml with about 330 calories and it has nearly no taste so you can sneak it into soups, sauces, yoghurt, pudding....You can only buy it in US but you can order it also from Europe. That is really great stuff.

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d off to University now 2 years after diagnose, still doing FBT and relapse prevention 
Ellesmum

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Reply with quote  #142 
Thanks all of you, it helps to write it all out. 
 
Her last blood tests were fine, she takes a multi-vit, iron and cod liver oil, her weight is decreasing though.

The big problem I have and perhaps someone can advise, is this - how do you get through to someone who insists they don't care if they die? Where is the bargaining chip?  Someone who doesn't want to go to school, doesn't care if they live, says they don't care about losing friends? I know she does care, I know she's lonely but late at night, when you are doing your utmost as a parent to remain calm, talk, be compassionate - what do you say to all that? 

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Ellesmum
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Reply with quote  #143 
Hi Ellesmum,
Just a quick reply going to bed..,
When my d says this stuff I don’t have any great wisdom, I just say I know u dont care at the moment, but I do, coz I love u and this is important .
Torie

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Reply with quote  #144 
Quote:
Originally Posted by Ellesmum
The big problem I have and perhaps someone can advise, is this - how do you get through to someone who insists they don't care if they die? Where is the bargaining chip?  Someone who doesn't want to go to school, doesn't care if they live, says they don't care about losing friends?


Very often, a higher level of care is needed to drag them back to health.  It sounds like your d is in real need of professional help.  Personally, I would be beating down their door to get treatment for her.  1,000 cal is not nearly enough, and you need professional assistance to increase that safely.  

I'm sorry to be so blunt.  I hope some of our UK members can help advise how to get your d the help she needs. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
WorriedMum68

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Reply with quote  #145 
Hi Ellesmum

I just wanted to write how sorry I am for your situation, and share a little of my daughter’s experience. She is a little older than yours, and started displaying signs of anorexia late last year. It is taken until very recently to get her into Camhs, but in the interim period I did manage to find several private eating disorder practioners (dietician, family support person and a psychiatrist) whose help I believe managed to stop her sliding down as quickly as I think she would have without them. I understand this is not a cheap option, nor the best long term one probably, but it might be worth considering until she has an appointment with Camhs. I also found my daughter a lovely counsellor, who has helped enormously with her mood and mental state, although has not been able to improve the food side.

Wishing you and your daughter all the best

Wm68



mid73

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Reply with quote  #146 
Hi
I’m sorry to hear how things are going. We started FBT with Uk Camhs and after initially making some progress we stalled. Could not increase the calories to a level to keep weight gain going. Coupled with this my D became violent. After 8 weeks of going nowhere fast, she was reviewed by CAMHS and we agreed a higher level of care was needed. I too was initially not wanting her to be treated in hospital but it became clear to me I wasn’t going to crack it at home. I expressed my concerns especially that the longer patients are starved the harder it is to recover and the more entrenched behaviours become. If you feel you are getting exhausted and getting nowhere despite trying all the excellent suggestions here, lobby hard for more help. Be that squeaky wheel. Go to A&E if her mental state is bad and she is refusing to eat. Don’t be apologetic or ashamed l. It’s a life threatening illness. Our children deserve treatment to get them better like any other child would get for a physical illness.

A ED unit turned things round for us so don’t be afraid if that’s what it takes.

Best Wishes and thinking of you x


yellowcaty

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Reply with quote  #147 
Hi

If I was you I would take her to A&E and tell them that you are desperate for help. Go into lots of detail about how much weight she has lost, what she eats and her mood. We originally had to wait for a general CAMHS appointment but a doctor at the hospital put in an emergency referral for us and she was seen within a matter of days. As far as School goes, I would keep her at home if you can. CAMHS wouldn’t let my daughter go to school for at least a month and then she only managed a couple of days and we pulled her out again. Does your CAMHS have a specialised ED section? We were really lucky that we got a brilliant team.
As you know my D is now in IP. Things are not great, but my biggest regret is that we didn’t get her there sooner. For some staying at home doesn’t work and we definitely needed a higher level of care.

Keep fighting
Sending you a big hug
Yellowcaty
tammy

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Reply with quote  #148 
Hi Ellesmum, We are in the UK too but in Scotland. We had to visit A&E because my son’s heart rate was low. He then got an emergency appt with CAMHs the next day. We were then refused FBT as he had not lost enough weight! He was eight years old and wanting to die, hurting himself, others and in extreme distress. I had to fight to get him the FBT. I went to our local MSP and she wrote to our Healthboard. Eva Musby also gave me loads of great advice. I would advise to fight in any way possible to get your daughter seen.
In the meantime I read Eva Musbys book, watched her videos and started secretely adding cream and butter to everything. The key for us was getting as many calories on a small plate as we could.
You are already managing some fear foods like cake. Would your daughter take smoothies that you can hide calories in!
Another key for us was understanding his distress and trying to support him and show compassion.
Good luck
Tammy
Ronson

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Reply with quote  #149 
Hi

We started with small bargaining chips like her phone. When you start to eat you can get your phone or I pad. She did want to go to school so that worked for breakfast and lunch but tea time was hard.

I’m not going to lie I have struggled at times to remain calm and compassionate and there has been shouting and things have been said which I regret.

You won’t be able to convince her that she needs to get better so you need to convince her to eat. We got really strict and eventually she did. There were days I thought we wouldn’t succeed but eventually we did. And I have to agree with others, we have seen improvement in mood. Although we are still getting outbursts they are less often and we can get out of the house more often than not without a meltdown over what she looks like.

Can you try phone as a bargaining tool. Would this be a start ?

I do agree with others though if you can’t get her to eat and she is losing weight then I would take her to a and e.

X

Oh and I don’t know what to say to those comments either , if I do answer it makes it worse and often escalates into an argument so I try to ignore it and just comment that I’m sorry she feels like that but she still needs to eat x
debra18

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Reply with quote  #150 
I reminded my daughter of all the good memories of things we did as a family and all of the positive things in her life.
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