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eternalhope

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Reply with quote  #51 
Sotired,
Thinking of you and saying prayers for your d and family.
K63

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Reply with quote  #52 
Hi Sotired, it's heartbreaking reading your post. You always fought so hard for best treatment for your d as well as having so much else going on. How is your d since admission. Thinking of ye and praying .
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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. 
Sotired

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Reply with quote  #53 
So we were told the meeting was around lunchtime-when I went up there at 10 30 am the doctor had already been and discussed what was happening with my d.
So I was a bit annoyed,though this is par for the course sadly.i got the registrar to come over and expressed my concerns and asked her to take them back to the doctor.apparently there is a professionals only meeting on Friday to discuss what happens from here.ive made it clear that no tube is not an option,but a better tube is.
Until then they are requesting my d stay in a week,I suspect to keep her potassium stable.i have other suspicions too but I'm going to try and curb my thoughts there.
I stayed with her a few hours and came home to make smallboy lunch.then d rang from the hospital crying and apologising for putting us through all this.but what's done is done- yes she could have worked with us more when she had anorexia,but that's not what happened and it can't be changed.we can only move forward,there's no point looking back at what ifs and might have beens.i still love her,she's still my kid after all.but guilt is a wasted emotion for the most part,she needs to work through that and concentrate on what happens now,the past is done.
I just can't take her emotions on past a certain point-I have to be able to cope with the rest of life too.but I've come home,I'm cranky with my other kids,it's all a bit much.
I'm just hoping that this meeting that they have on Friday produces something positive.if it doesn't then somehow I still have to get up every day,do smallboys birthday party and pretend to be ok.
Thank you so much everyone for your prayers and good wishes,I ask that you pray again on Friday that our team actually do something useful that helps my poor little girl.

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Sotired42
DolphinUK

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Reply with quote  #54 
Sotired, I am praying for you all.

Much love
Dolphin

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You can never cross the ocean until you have the courage to lose sight of the shore
Christopher Columbus
toothfairy

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Reply with quote  #55 
The very Best of Irish Luck to you and your D next Friday x
__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
Trytrytry

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Reply with quote  #56 
I am sure you are very much aware but it sounds like your d is her own worst enemy.
The best thing you can do is try and keep her in the hospital and stop her from self discharging. I am sure they want he to stay the week to observe her behaviours, if she is trying, having her feeds without tampering and trying to eat. Given her history, you can understand this.

If she stays in hospital and behaves herself and shows she is trying, wants help, that is probably the most useful thing anyone can do

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I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
Sotired

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Reply with quote  #57 
Professionals held their meeting on Friday.it would appear the big difference between when your child is classified as an adult and when they are classified a child is when you or your adult child get told anything.
Because we've been told nothing,we didn't even get a phone call to set up a meeting after-we've been told this will happen by a secondary source,but have had no contact from the person leading the team.
The reason that is hard is twofold-it increases our stress levels by a 100% for a start.i feel like I can't breathe-I know I am not breathing properly,from my chest instead f my diaphragm,which makes me feel dizzy and faint.if I catch myself doing it I self correct of course but I still have to consciously remember.my stomach is just in knots.my h is so sad,I see it but we don't talk about it much.yesterday we just sat in the car talking about how talking about it solves nothing.he has less hope than I do-and that's the one thing he's always had more of than me in the past.
The other reason it's hard is that it's school holidays.keep in mind we are on our fourth year of our oldest daughter being sick.three of anorexia,one of gastroparesis.the other children suffer too.i don't take them up to the hospital as much but we can't travel -if something goes wrong when she's in hospital we want to be able to get there quickly.
I have done one trip with the other kids in previous school holidays,but d was much better then.
But I'm still having to organise play dates for smallboy,a friend is coming to stay,smallboys birthday party is this coming weekend,my middle child has been very sad and upset-yesterday I organised for her to go to the movies with her dad,midweek we will visit friends who live a bit further away.im still constantly juggling the needs of all the kids-because if I don't and they fall apart as well it's not going to make life any easier.
Today we have a play date,I have a doctor appointment for myself and d is saying that I need to be available for a meeting if it happens at the hospital.ive said the hospital need to ring me to set up a time for the meeting so my h can attend as well.
D has been very sick and much more stressed this admission which has made things so much harder.she hasn't been able to keep water down,so is on fluids.her veins collapse so they have lures all over them.im doing my best but feel like I'm not really coping so well.thats why I'm going to the doctor.hopefully the hospital contact us today-and probably during my doctor appointment cause that's how my luck runs.

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Sotired42
deenl

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Reply with quote  #58 
Hi sotired,

Wish there was something I could do but know that you are often in my thoughts, sending you lots of positive vibes.

Hugs,
D

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

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
mjkz

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Reply with quote  #59 
Quote:
Professionals held their meeting on Friday.it would appear the big difference between when your child is classified as an adult and when they are classified a child is when you or your adult child get told anything.


They used to try to do that with my daughter too.  Your daughter has rights and one of them is being present at meetings that they talk about her treatment because she is the most important part of her treatment team (as are you her parents as her supporters).  Your daughter has the right to have input into the treatment plan, to refuse treatment and to advocate for treatment.  I can't believe that New Zealand doesn't have a patient bill of rights.

Addendum: They do have a patient bill of rights.

Patient rights

Patients have rights as consumers of health and disability services provided by doctors and other health professionals in public and private services, for paid and unpaid services, within hospitals and within private practices.  The code of rights is law under the Health and Disability Act 1994 (the HDC Act).

The rights of patients can be summarised into 10 points:

  1. Consumers should always be treated with respect.
  2. No one should discriminate against consumers, pressure them into anything, or take advantage of them.
  3. Services should help consumers to live dignified, independent lives.
  4. Consumers should be treated with reasonable care and skill and receive well coordinated services.
  5. Service providers should listen to consumers and give them information in a way they can understand and that makes them comfortable to ask questions if they don’t understand. This may require the services of an interpreter.
  6. Consumers should have any treatment explained to them, including benefits, risks, alternatives, and costs, and have any questions answered honestly.
  7. Consumers can make their own decisions about treatment, and are free to change their mind.
  8. Consumers can have a support person with them at most times.
  9. All these rights apply if consumers are asked to take part in research or teaching.
  10. Consumers have a right to make a complaint and have it taken seriously.
Tali97

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Reply with quote  #60 
(please excuse the typing broke right wrist)
Hi SoTired,
I find it unbelievable what you have to put up with. the medical professional should understand that anxiety makes gastroparesis worse and should be doing everything within their power to reduce her anxiety. that includes informing her support group of everything that is going on medically and ensure that said support group is present when they talk to her about plans to move forward with her treatment. 
Hoping things change for the better soon. {{{Hugs}}}

__________________
18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
Sotired

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Reply with quote  #61 
I am very tired but really wanted to share our news.
D WILL BE GETTING AN NJ /NG TUBE!
Yes,after arguing with the hospital a year,watching my d deteriorating and feeling helpless,I finally put that complaint in and boy did it get results.the two week admission was hell,very stressful,but finally the hospital agree to try the NJ tube for feeding with the NG tube for drainage.
So that will happen in the next 2-3 weeks.
I am very happy for my d,I really hope this works because after this we are out of options.
Can't believe I have won a second time.getting my d to stay in hospital,sitting through meetings,it's all worth it in the end if I can get her the best chance at a good life.
So it seems good news here for once!

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Sotired42
Kali

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Reply with quote  #62 
SoTired that is wonderful news! You are a champ! Hoping for all the best for your daughter.

Kali

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Food=Love
Torie

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Reply with quote  #63 
Wow wow wow!!!!  I can't tell you how happy I am to hear this!
 
You have fought so long and hard for your d - such a hero mum!  A real inspiration to everyone here.

I'm sure you're exhausted, but as you would imagine, we have loads of questions like how and when this starts and how it is going.  I'll try to hold off on asking them, though, until you have a chance for a well-deserved rest.

You rock!!  xx

-Torie

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

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Reply with quote  #64 
That is great news. I am sure it can't happen soon enough. 
__________________
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.
Mamaroo

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Posts: 168
Reply with quote  #65 
Sotired, you've made my day!!!! All the best
__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. Challenging fear foods and behaviours now.
deenl

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Posts: 882
Reply with quote  #66 
Such fantastic news that I've tears in my eyes.

You've all put in such effort that you deserve progress.

Warm wishes

D

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

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Tali97

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Posts: 187
Reply with quote  #67 
Excellent news, hope it happens quickly!
__________________
18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
EDAction

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Posts: 377
Reply with quote  #68 
Yay!!!!!!!!  Congratulations!!!!!!!!!!  What wonderful news!  You are amazing!  Thank you for sharing!  Hope you have a peaceful and restorative rest! 
eternalhope

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Posts: 116
Reply with quote  #69 
Best news I've heard all day! I'm so happy for you. Thanks for sharing.
K63

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Posts: 851
Reply with quote  #70 
Hi Sotired, I have always seen you as a tower of strength on this forum and gave me hope to keep going when we were at our lowest. It's been so hard for you and your family and am so happy to see your positive post and that they will insert nj /NG tube and give your daughter a better chance. Hope you get to rest yourself now also thinking of you.
__________________
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. 
melstevUK

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Posts: 2,595
Reply with quote  #71 
SoTired,

So very happy that at last you are getting the help you want.  You really deserve a break.  Well done for putting in so much effort and fighting to get help for your beloved d.  I hope this procedure finally starts the recovery process for her.

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Believe you can and you're halfway there.
Theodore Roosevelt.
toothfairy

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Reply with quote  #72 
So pleased for you all xxx
__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
Francie

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Posts: 214
Reply with quote  #73 
Hooray, Sotired!! All best and many prayers going out to you and your family today. Very best wishes.


__________________

Francie

martican

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Reply with quote  #74 
WOW! Cheering for you! Excellent job! I hope your doc appointment was helpful too.
Sotired

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Posts: 1,930
Reply with quote  #75 
I don't know what to do.while we are waiting for the hospital to get back to us,in the last week it feels like d has completely fallen apart.she is crying all the time and now saying that she lied to us,that there is nothing wrong with her-then when she calms down again,she acknowledges that this is probably fear of getting an NJ tube.
I'm at a complete loss how to deal with this.i have said to her that we will try the NJ tube for weight gain and then if she doesn't need it we will remove it once she is weight restored.on Friday she was so weak she couldn't walk for more than ten minutes,today she said that is all a lie,despite the fact I can hear her having trouble breathing and walking at the same time.
What in hell is going on here???
Was I right in the first place when I doubted she had this?is she just frightened?is she so stressed that she is having a breakdown?we had a recent meeting with reds where she was cleared of having anorexia -again,cleared,for the fourth time-i don't know what this is.
I am however,exhausted from dealing with her.have my h dealing with her latest break down while I came to ask you guys- what is this about??
She has been feeling massive guilt at the moment and apologises all the time,also whilst crying.i always thought I needed her to say sorry-but I didn't,it turns out.i don't need her to say sorry for something she couldn't help.
But now with her claims that she did this all for attention,that there's nothing wrong with her...what on earth do I say?
I'm truly lost here.anyone got any ideas?

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Sotired42
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