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NELLY_UK

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Reply with quote  #76 
Hi Sotired, what a nightmare of confusion. But, she is ill, you will keep pursuing new or different treatments to get her health back. She is confused and scared as well and guilty. Acknowledge the fears and admissions but try to see what helps her cope and get through these confusing frogtening times then hopefully she will start to focus on her resources and atrengths, which she must have to have got this far.
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NELLY D 18 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. Bulimia treatmentis in the dark ages in West Sussex.
Jasmine1

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Reply with quote  #77 
sotired- I'm so sorry to read this. I haven't been on the site for a while and this was the first post I read. Thank you for sharing and highlighting with honesty just how awful this illness can be. Wishing you continuing strength to keep going and supporting your daughter. Thinking of you and hoping that things will get better with time.
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Daughter was age 11 when she started restricting Aug 2014, admitted to paed ward Dec 2014 for low BP, pulse rate and spent 3 weeks there. As they were about to NG tube her, she decided to eat again. After approx. 1.5 years on a meal plan and lots of toil, sweat and tears she is weight restored and has just been discharged from NHS care. It's been a very slow traumatic process but each day we are making progress.
Jasmine1

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Reply with quote  #78 
sotired- I'm so sorry to read this. I haven't been on the site for a while and this was the first post I read. Thank you for sharing and highlighting with honesty just how awful this illness can be. Wishing you continuing strength to keep going and supporting your daughter. Thinking of you and hoping that things will get better with time.
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Daughter was age 11 when she started restricting Aug 2014, admitted to paed ward Dec 2014 for low BP, pulse rate and spent 3 weeks there. As they were about to NG tube her, she decided to eat again. After approx. 1.5 years on a meal plan and lots of toil, sweat and tears she is weight restored and has just been discharged from NHS care. It's been a very slow traumatic process but each day we are making progress.
mjkz

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Reply with quote  #79 
SoTired, don't forget how much of an eating disorder is from starving and your daughter is starving right now.  I have no doubt she is afraid of this working and her having to gain weight. I think she is feeling really guilty right now and it is much easier to say she made this all up than to deal with it.  I think you are seeing the same ED type behavior due to the fact that she is starving.  Just keep pushing to get the tubes and ignore all the ED talk because that's what it is.  I'm not saying she is anorexic again but you know as well as all of us that with the genetic predisposition she is going to start showing signs of an ED while starving.  Keep pushing forward my friend. 
Kali

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Reply with quote  #80 
SoTired,

So sorry..... I know you will do the best for your daughter. You are a true warrior mom.

I wonder if your daughter may be reacting this way due to her malnourished state. As the others have said, perhaps validate her feelings "I know it must be difficult" etc and then let her know that you and her team are doing everything possible to help her regain her health. It sounds as though she is very frightened and who in her situation would NOT be terrified? 

Is there some way you can think of soothing her?
When will the procedure be to place the new tube?

Quote:
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? 


If there was really nothing wrong then you know she would be able to sit down and eat a meal.

Try, if you can, to not get caught up in the drama and to focus on the goal of getting help for her. I know it is beyond scary and difficult. Sending you a virtual hug.

Kali

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Tali97

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Reply with quote  #81 
Hi SoTired,

I hope for her sake that the NJ tube gets fitted soon. I expect that the stress of the upcoming procedure is making things worse.

the things that would help with my son are to express lots of sympathy about the upcoming procedures but talk about how hard she has been trying. that you admire her efforts to cope getting enough nutrition, but that you can see her body needs more help to succeed. that you hope that the NJ tube will make a difference to her body and so have to give the tube a chance. You will help her manage the tube and will advocate for her with medical personnel when she needs you too. Generally just say you are sorry but you do not see any other way forward, but you are there for her as she travels down this road. 

{{{HUGS}}}

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

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Reply with quote  #82 
Sotired, I wonder if it might help to tell your d that YOU need her to have the NJ tube.  "I know this is scary.  I know it is hard.  But I need you to do this."  You have probably already tried that.

You are so strong.  You can do this, one way or other.  Hang in there.

With you in spirit.  Hugs xx

-Torie

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

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Reply with quote  #83 
SoTired, it sounds like she is having anxiety over the NJ tube and trying to get out of it. I’m so sorry it’s so tough. Wishing you the best and saying a prayer for you all tonight.
mil16

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Reply with quote  #84 
But now with her claims that she did this a
for attention,that there's nothing wrong with her...what on earth do I say?
I'm truly lost here.anyone got any ideas?” I just don’t believe that This disorder will stop at nothing Do not believe a word ED says Tell her how much you all love her Sending you big hugs from Dunedin NZ

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mil16
HateEDwithApassion

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Reply with quote  #85 
One thing a therapist said to my D that really stuck with me was that if a suffered can't normalize their behaviors around food, they are still actively in their eating disorder. Maybe not always starving themselves per se, but giving ED space in their head to keep pushing for its way.

Because your D has a biological vulnerability that makes relapse a certainty when malnourished, I would imagine the ED is cranking up the volume in her head.

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
catbells

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Reply with quote  #86 
Hi Sotired - sending hugs.
I too think it's ED roaring back - it's scared- as is your d. Keep strong xx

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Mum to 17y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016.
zitab

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Reply with quote  #87 
i was so sorry to read your post. My heart goes out to you. ED is unbelievably cruel. God bless and give you strength to carry on not just for you but your family. X
Sotired

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Reply with quote  #88 
Sorry I haven't replied or posted lately,been a bit hellish here.on the upside d finally has her NJ tube.the downside is she was still very emotional and upset for a few days after.wednesday night she was in so much pain she asked me if she could just please die rather than hurt this bad.i just empathised with her and then made her get clean and put clean clothes on for the first time in three days.she came right after that.
Saturday she had some leave and enjoyed hanging out with us and her friends, but then on Sunday she blacked out and a nurse found her on the floor.so no home leave yesterday.
No one knows what caused it.
So ups and downs here.hopefully she's out tomorrow, but we are very nervous she will have blackouts at home.
This is it though,this is our last try at saving her,so she has to make a go of it.her veins keep collapsing when they take bloods so it looks like tpn would simply not be an option.so the ball is in her and her body's court.
I'm past the point of keeping her alive at any cost-she lives daily with so much pain that I will not push again for more treatment.
Anything more will have to be led by her so I can be sure it's her that wants life ,not me.i understand that this may be an unpopular viewpoint but I've already lived with a dying person before and I will not make my daughter suffer for me or anyone else.
Meantime I just keep trucking along.

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Sotired42
Kali

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Reply with quote  #89 
Sotired42,

All best wishes for your daughter. I hope the tube will help her and am sorry to hear about the blacking out and discomfort.

With the NJ tube is she able to eat anything orally or does it all go through the tube? And is it possible for the problems with her stomach muscles due to the gastroparesis to improve in any way when that area is being bypassed and rested because the NJ tube goes right to the small intestine? 

warmly,

Kali

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eternalhope

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Reply with quote  #90 
Sotired, you are an amazing mom. You have fought and fought for your d, and I so admire your bravery and toughness. I’ll continue to keep you, your d and your family in my prayers.
melstevUK

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Reply with quote  #91 
Sotired,

I am deeply sorry for all that your poor d and family have suffered, and are suffering.  I share and totally get your viewpoint.  At least with the nj tube, you are giving her your very best shot and last attempt at helping her get a life back.  And the main thing is that, if you are destined to lose her, you will have done everything in your power to give her the chance of life and recovery.  No mother can do more than that.  This terrible terrible illness has taken such a toll on your girl, it is just so unfair.  But you will have given your all to help her - and ultimately that is what counts.  You will know that you did everything and that is easier to live with than regrets that you could have done more.  There is absolutely no more that you could have done, or can do, and I utterly respect your love and dedication as a mother in this very complex case.  
My heart goes out to you.



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Believe you can and you're halfway there.
Theodore Roosevelt.
Tali97

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Reply with quote  #92 
Hi SoTired,

You are an amazing woman and have managed what has seemed impossible for so long. Hopefully, your daughter's health will start to improve and that the medical services will treat her with compassion. 
{{{HUGS}}}


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

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Reply with quote  #93 
Sotired, if she has only gotten the J tube this past Wednesday, it is too soon to guess what will happen.  Honestly, it sounds like the increase in nutrition may have caused ED it rear its ugly head - emotional, upset, pain, talk of dying are all to familiar in the early stages of upping the calories.

I fully understand why you are at your wits end with this, and I'm so sorry for how long and how intensely you and your family have suffered.  Thanks for writing because I have been thinking of you and your d and wondering how you were getting on.  Did you lose the moon boot at least?

Love,

Torie

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

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Reply with quote  #94 
Sending hugs to you and your family Sotired.  You have done everything possible for you D.  This illness really sucks!
Francie

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Reply with quote  #95 
Sotired, I'm so sorry for what you and your family and your daughter are going through. Prayers to you. XO


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Francie

toothfairy

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Reply with quote  #96 
Thinking of you x
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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.
mil16

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Reply with quote  #97 
I am not a religious person but I am praying for your D and you You are so unselfish and loving- an incredible mother
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mil16
HateEDwithApassion

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Reply with quote  #98 
Sotired,

You are an amazing mom. Your fighting spirit and commitment to her is such a beautiful picture of love. I pray that she will be healed and you'll see baby steps of improvement. You are an inspiration, and I just hope things will start to get better for your family.

__________________
17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
Trytrytry

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Reply with quote  #99 
Just a question, could be you have it sorted but anyway - are you aware of the differences in g and j tubes? As in j tubes you cannot bonus or you can have problems that will cause you to pass out, seizures? They are quite manageable but cannot be used the same as ng tubes (I hope someone has informed you of the potential problems of bonus feeds and blood sugar levels. If not it is important info and I suggest googling M.J. tubes and dumping syndrome for some guidance. Also some find it hard to tolerate faster rates, some find certain brands better than others - you can get formulas that are already broken down so your gut doesn’t ha e to do that part and these are generally tolerated much better. Hoping it works

And as for the give up palliative care option. We are in that for my d. There is nothing wrong with it. If there is no treatment that is acceptable it is your d’s right to say no more which is what mine has done. She will accept only symptom relief treatment of meds. No procedures and hospital in the home only. Will she die sooner - yes but it is her choice and was decided on, really, given your d’s age it now is up to her and she should have all the paperwork completefed stating what treatment she will accept and refuse, especially if she becomes unconscious, the default is to keep alive.

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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.
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Reply with quote  #100 
Hi sotired,

Just a quick post to say that I am thinking of you all and sending thoughts/prayers/vibes your way.

Wishing you all continued strength and courage,

D

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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.
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