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jean409

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Reply with quote  #1 
Hello,

New here, and only just realising my granddaughter has an ED. As yet I'm a little confused as to what it is, and overwhelmed by lots of information. I am her guardian as she suffered neglect and abuse from her parents. She is 17. She has been tube fed, as she was very underweight, but that came out 2 weeks ago.

She seems to struggle with swallowing and only eats small amounts of food at a time, except for at night time, when she will make some very strange food choices. She finds shakes and smoothies and softer foods in general easier to eat. She has some other complex issues relating to the abuse.

I just want to know if she is going to be ok and make a full recovery and whether we are doing the right thing. She shuts down if she feels forced into anything, so I try to be encouraging rather than demanding but this results in her not having everything at every meal. Obviously she makes up for it somewhat when she eats at night time. This week she has put on nearly 1kg without the tube which is great. I feel woefully underqualified.
bccka5

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Reply with quote  #2 
I'm so sorry, jean409, that you have to be here with us but you're in good hands. This website has a lot of great information but I would also recommend Lock and LeGrange's book  "Help Your Teenager Beat an Eating Disorder" if you haven't already read it. The authors are the doctors who started Maudsley (FBT) and brought it to the states. 

Small bites, strange food choices, and resisting meals are all behaviors that are exhibited with ED. You might even resolve one of the behaviors and a new one will appear to challenge you all over. That is how ED works. It will make you question everything, every step of the way. You have to be demanding first and then encouraging next. Your granddaughter has to eat every 3 hours with 3 meals and 2-3 snacks a day. You can coach her thru the meals and cheer her on but if she doesn't eat you have to be ready to take her back to the hospital for a tube. No food = no school, no friends, no life. 

As far as you feeling qualified, you have proven that you already are. You've loved her enough to take her in and that is exactly what she needs. I can assure you that none of us felt qualified to fight this disease but our kids need us to. The harder you come at ED the better chance you have of helping her recover before she is 18 and considered an adult and can make her own legal decisions pertaining to health care. Refeeding can get ugly and when it does then you know you're doing the right thing. 

What makes this doubly difficult is the abuse and neglect that she has endured. Right now focus on the food. Food is Medicine. Once she is further towards weight restoration you can then start seeking treatment for the other emotional issues. Because her brain and body are malnourished, they need time to heal (and lots of food). I would encourage you to find a good FBT therapist who can support you and your family along the way and help develop some distress tolerance skills. There are still a lot of therapists out there who are blaming and shaming families and will only work against what you're trying to do at home.

Please continue posting questions and concerns. Stay Strong and Persevere! 



__________________
Daughter diagnosed with anorexia at 12 in 2013 without having any image issues/concerns about calories or exercise. Hospitalized - 3 days. FBT at home along with outpatient therapy - 16 weeks. Recovered/weight restored - 4 years. Still gaining and growing but has no hunger signs yet.  
tina72

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Reply with quote  #3 
Hi jean409,
you have done a great job when she gained 1 kg without tube this week and that shows that you seem to be very qualified! Lots of us needed weeks to get that in!
She will be ok and full recovery is possible if she is weight restored. Keep on hoping. Read Eva Musbys great book "Anorexia and other Eating Disorders: how to help your child eat well and be well", you will find a lot of helpful information and practical tips there.
Keep on asking, here are a lot of nice people helping you! You are doing just the right thing!
Tina72
jean409

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Reply with quote  #4 
Thank you both so much. I wish there was a manual that could tell me when to push her and when to back off. She can be very stubborn, not just with food, but I think that stubbornness is driven by fear. She has a lot of fear of some every day situations. Seeing a doctor is a huge ordeal for her. Distress tolerance is definitely something we need to work on too. I don't even know what a restored weight would be for her because she has been underweight for a very long time.
mjkz

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Reply with quote  #5 
Hi Jean.  My daughter too suffered severe trauma at a very young age and suffers from complex trauma issues as well as having been severely underweight for most of her life.  I don't think we ever feel qualified to deal with any of it but you are doing a great job.  My daughter too shuts down if she feels pushed into anything and God bless her if you tell her the sky is blue she will successfully argue that is green until you are convinced too!!!  I found that it was essential for my daughter to work on gaining weight as well as coping strategies and distress tolerance.  She did DBT many times and hated it every single time but now admits that it was helpful because different things actually worked for her depending on where she was at the time.  I found distraction and very clear boundaries were the key.  She knew going into a meal that she had to eat everything given and if she did not what would happen.  I would emphasize again and again that she could do this, she had a choice in it and every bite was a step in the right direction.  We had a contract that spelled everything out including my responsibilities so she knew what I was committed to as well as what she was committed to.  You will find many helpful people here so ask questions.  There is no stupid questions so ask away!!!
jean409

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Reply with quote  #6 
I thought today was a good day, but A can always prove me wrong! I notice a pattern of steep hills - every time she goes up, she plummets just as far down. I hate to see her so distressed. I want to take it all away for her. I feel so much guilt for not stepping in all those years I could have helped her. I should have known.
I don't know the outcomes for children who have been through something similar. What are we aiming for?
A is terrified of doctors and hospitals, so I have been vowing to help her at home as much as I can. Is this the right thing?
Is she being truthful when she says she is full or can't eat anymore or can't swallow? I don't think she has the body image issues that come with anorexia, I just don't know if she genuinely physically struggles to eat, or it's something else and I'm being played.
She eats all sorts of things during the night. I am starting to leave things in her room to eat, so she doesn't hurt herself going downstairs, but she will often eat that and then raid the fridge as well. Is this something I should be preventing? Or just be glad she is eating? I have had to hide eggs and meat because of her trying to eat them raw.
mjkz

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Reply with quote  #7 
Quote:
I hate to see her so distressed.

One of the things I think all of us have had to work on is our own distress tolerance.  You can't take this away for her and it seems backwards but trying to soothe her will often times increase the distress.  One of the things that a lot of us have found is that being very steady (This is what you need, keep eating, etc.) and distraction are the best tools during those distressful times.

Quote:
What are we aiming for?


I don't know about you but I'm aiming for the best quality of life for my daughter.  Recovery means something different for every person in subtle ways like for instance if I said I want my daughter to be able to eat intuitively and never have Ed thoughts-that would be recovery.  It is not realistic for my daughter to be honest because she doesn't get hungry and she still has the thoughts.  My idea of recovery for her is she can follow a very rough meal plan with flexibility, be able to eat enough to keep her healthy and stable, doing what she wants to do.  She may stop having the thoughts at some point in the future but right now she eats in spite of what she is thinking and doesn't let her thoughts dictate her actions.  Feelings are just feelings.  They won't kill you and they don't have to lead to action.

Quote:
Is she being truthful when she says she is full or can't eat anymore or can't swallow?


Hard to tell.  Refeeding is physically uncomfortable so she could be telling the truth or just using it as an excuse not to eat more. You still keep feeding and pushing but some people have found a heating pad to be invaluable for the inevitable stomach aches.

Quote:
I just don't know if she genuinely physically struggles to eat, or it's something else and I'm being played.


It doesn't really matter which one of the two it is. The treatment is still the same.  You can successfully treat an ED without ever knowing why something is happening.  Just keep feeding.


deenl

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Reply with quote  #8 
Hi jean409 and welcome,

There is indeed a very steep learning curve for all carers of patients with eating disorders. I think pretty much everyone here will tell you that the first couple of months were spent reading and learning. 

The most fundamental step is nutritional rehabilitation, that is refeeding. And it is hard but it will mean firstly, safety from the physical dangers of malnutrition and after a period of time the beginning of brain healing. Very many of the psychological symptoms of an eating disorder are the same a the psychological symptoms for starvation. This, of course, is easier said than done. 

There can be no recovery from an eating disorder without first being weight restored. In most cases we can use an initial weight target based on historical height/weight charts but very many of us have found that we need to go over these initial targets in order to see real psychological recovery. We use 'state, not weight' to capture recovery in a nutshell. In many cases what we see is the ED behaviours melt away with sufficient weight and ongoing nutrition. Our loved ones become themselves again.

While nutritional rehabilitation is the basis for recovery, there is standard path to get back to full health. This is especially the case for patients with a more complicated situation, co-morbids or trauma. I know of cases where the treatment for ED and the trauma have had to move hand in hand but the focus must ALWAYS be on adequate nutrition.

There is a syndrome called Night Eating Syndrome where someone gets about 25% or more of their nutrition at night. This causes irregularities in their sleep/wake and eating patterns throughout the day. Perhaps it is something to discuss with your treatment team. My son would not engage with them but I insisted on him going to the doctor to be monitored for medical dangers. He would have his vitals checked and walk out the door. Then she and I would talk about what needed to happen. Likewise, the family therapist only talked with me and my husband to help us to help our son.

My son was only 12 when he got sick but, like your granddaughter, he is pretty strong willed and would really cut off his nose to spite his face if told he MUST do something. What I did was read a lot on here and in books. I picked the ideas that I thought would work best for us. But I was determined and convinced that the only path to recovery was to eat. I asked for support, cheers and information on here and the forum members did not let me down. Here are the varied ways they have helped their loved ones. Please feel free to read around in our Learning Center and more generally on the forum.

One of our members has posted a very comprehensive list of resources here. Our user guide is here. If you find someone's story useful or want to search for specific information, the instructions are on there. Remember we are all here for you to provide support, a safe place to vent anger or fear and to provide you knowledge we have learned through trial and error. When in the midst of our journey, I would post a question and consider the answers a sort of smorgasbord of ideas from which to chose our path. The forum members were experts through experience but I was the expert on my son. The combination help us to get our son well again.

As the others have said, you have two of the most basic qualities needed to help your granddaughter, love and a drive for information.

Warm wishes,
D

Link to video 'How to help your child to eat'
https://www.youtube.com/watch?time_continue=6&v=2O9nZAWCkLc

Link to video 'State, not weight'
https://www.youtube.com/watch?time_continue=2&v=jzyIaVomqJg



__________________
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.
Torie

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Reply with quote  #9 
Quote:
Originally Posted by jean409
I feel so much guilt for not stepping in all those years I could have helped her.


Please try to stop feeling guilty.  It doesn't do your granddaughter any good; if anything, it weakens you and makes you less effective.  If we could buy a ticket to go back in time and change things, we all would, but we can't so the only available path is forward.  She needs your entire energy focused on moving FORWARD.

I don't know much of anything about dealing with trauma, but I do know what is needed to recover from anorexia: Food.  As a first step in understanding AN (anorexia), I would encourage you to think about it separately from the trauma.  Like, if she needed her wisdom teeth removed ... let's first understand the removing wisdom teeth part, and then once we understand that, let's try to understand how the history of trauma complicates things.

So, the AN.

It's a weird and awful illness that turns them inside out and upside down and into someone we don't recognize.  Amazing, really, what it does to their brains.  Somehow the wiring gets scrambled so that instead of triggering the normal responses, eating triggers panic and terror in our poor kids.  

But they have to eat anyway.

That's the key: They need to regain ALL the weight they have been missing in order to recover. It is hard, traumatic for everyone, and generally the worst experience in our lives trying to help them regain this weight.  Ugh ugh ugh.  And these are kids WITHOUT a history of trauma so that part is the same for all of us here as for you, I think.  They will have a million excuses why they can't eat enough - some valid, some downright lies - but no matter how hard it is, they have to eat anyway.  That's the ticket.  We're pretty much experts on that part so we can offer lots of tips and support.

I'm wondering about the nighttime eating you report, and I wonder if she might be bingeing and purging at night.  (Another whole, separate nightmare, that.)  To the extent possible, I would encourage you to supervise her at night, and keep her with you for at least an hour after eating.  Also, it's important for them to have a balanced mix of foods at each meal - carbs, protein, and especially fats.  That can help minimize the impulse to binge.  

Please feel free to ask all the questions you like.  Your granddaughter is lucky to have you. xx

-Torie

__________________
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Posts: 222
Reply with quote  #10 
"I don't know the outcomes for children who have been through something similar. What are we aiming for?"
If you go on helping her with refeeding the outcome is very good. Most of the kids here who have survived AN for some years seem to live a normal life. Maybe she keeps some little strange eating habits, but who of us has not? It takes a lot of time. It is a war with a lot of little and big battles. But you can win that.

"A is terrified of doctors and hospitals, so I have been vowing to help her at home as much as I can. Is this the right thing?"
If you can help her at home thats the best for her. Some of us needed IP to start (me included). But at some day you have to go back home and you have to figure out what works and what doesn´t. You are the person who knows her best. You are the person who loves her most. Fighting AN is very hard. Noone but you would do that for her. You are her only hope. So where is the question? You got nothing to lose!

"Is she being truthful when she says she is full or can't eat anymore or can't swallow?"
They all say they cannot eat more. That is AN speaking. Surely it makes problems to eat normal amounts when you ate like a bird for a long time. Surely she feels uncomfortable. But you will see that you will have the same discussion and the same whining about any amount. We had to learn that if she whines anyway, it should be worth it, so we gave her a portion a normal young woman of her age could eat - and she ate it. The problems about that get less with every day in refeeding. She will get used to bigger/normal portions.

"Is this something I should be preventing? Or just be glad she is eating?"
Difficult question, depending on how much she has to gain. At the beginning I would think be glad shes eating. But eating that much at night (and even raw!) is no normal behaviour. It is ED which tells her to eat at night (why? no answer...). Try to make her eat 3 meals and 3 snacks through the day (every 3-4 hours). Large times of not eating make the ED worse. She loves that feeling of hunger through the day now and she needs to keep her blood sugar level constant. That works only with regular meals. Try to figure out what makes it easier to eat at night. Maybe she could eat at the day if you close the shutters? Figure out wether she is purging that food at night. Think about every possible place. Some kids even vomit through the window or dig it in the garden.

"I don't even know what a restored weight would be for her because she has been underweight for a very long time."
That is a difficult question, too. First you can see how tall she is and what shes weighing now. Than take BMI and look in the percentil curve for girls of that age. Mine is 17, too and she needs to have a BMI bigger than 18,5 says the paper. That means 50 kg for us. But I now that is too low. Most patients need a BMI around 21. You will see it from her behaviour what weight she will need. BMI 19 is a number to start with. Than watch her behaviour. Is she still occupied by ED, you need to go higher. There will come a weight special for each patient when she is calming down and behaving normal and feeling well again. You will get there with every kg she gains. You will see great progress in her behaviour.

"I wish there would be a manual..."
Eva Musbys great book "Anorexia and other Eating Disorders: how to help your child eat well and be well" is that manual you are looking for. It helped us a lot. There are tips in it for nearly every situation you will get in. And there is a manual from James Lock and Daniel Legrange (who developed FBT): Help Your Teenager Beat an Eating Disorder. Both are great help and have a lot of detailed information and plans.

I think your granddaughter is a very lucky and blessed girl to have such a great granny!!!
Tina72


tina72

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Registered:
Posts: 222
Reply with quote  #11 
"I don't know the outcomes for children who have been through something similar. What are we aiming for?"
If you go on helping her with refeeding the outcome is very good. Most of the kids here who have survived AN for some years seem to live a normal life. Maybe she keeps some little strange eating habits, but who of us has not? It takes a lot of time. It is a war with a lot of little and big battles. But you can win that.

"A is terrified of doctors and hospitals, so I have been vowing to help her at home as much as I can. Is this the right thing?"
If you can help her at home thats the best for her. Some of us needed IP to start (me included). But at some day you have to go back home and you have to figure out what works and what doesn´t. You are the person who knows her best. You are the person who loves her most. Fighting AN is very hard. Noone but you would do that for her. You are her only hope. So where is the question? You got nothing to lose!

"Is she being truthful when she says she is full or can't eat anymore or can't swallow?"
They all say they cannot eat more. That is AN speaking. Surely it makes problems to eat normal amounts when you ate like a bird for a long time. Surely she feels uncomfortable. But you will see that you will have the same discussion and the same whining about any amount. We had to learn that if she whines anyway, it should be worth it, so we gave her a portion a normal young woman of her age could eat - and she ate it. The problems about that get less with every day in refeeding. She will get used to bigger/normal portions.

"Is this something I should be preventing? Or just be glad she is eating?"
Difficult question, depending on how much she has to gain. At the beginning I would think be glad shes eating. But eating that much at night (and even raw!) is no normal behaviour. It is ED which tells her to eat at night (why? no answer...). Try to make her eat 3 meals and 3 snacks through the day (every 3-4 hours). Large times of not eating make the ED worse. She loves that feeling of hunger through the day now and she needs to keep her blood sugar level constant. That works only with regular meals. Try to figure out what makes it easier to eat at night. Maybe she could eat at the day if you close the shutters? Figure out wether she is purging that food at night. Think about every possible place. Some kids even vomit through the window or dig it in the garden.

"I don't even know what a restored weight would be for her because she has been underweight for a very long time."
That is a difficult question, too. First you can see how tall she is and what shes weighing now. Than take BMI and look in the percentil curve for girls of that age. Mine is 17, too and she needs to have a BMI bigger than 18,5 says the paper. That means 50 kg for us. But I now that is too low. Most patients need a BMI around 21. You will see it from her behaviour what weight she will need. BMI 19 is a number to start with. Than watch her behaviour. Is she still occupied by ED, you need to go higher. There will come a weight special for each patient when she is calming down and behaving normal and feeling well again. You will get there with every kg she gains. You will see great progress in her behaviour.

"I wish there would be a manual..."
Eva Musbys great book "Anorexia and other Eating Disorders: how to help your child eat well and be well" is that manual you are looking for. It helped us a lot. There are tips in it for nearly every situation you will get in. And there is a manual from James Lock and Daniel Legrange (who developed FBT): Help Your Teenager Beat an Eating Disorder. Both are great help and have a lot of detailed information and plans.

I think your granddaughter is a very lucky and blessed girl to have such a great granny!!! You are not guilty for anything you have not done in the past. We all have discovered it too late. Nobody is prepared for that. Look forward.
Tina72


tina72

Caregiver
Registered:
Posts: 222
Reply with quote  #12 
"I don't know the outcomes for children who have been through something similar. What are we aiming for?"
If you go on helping her with refeeding the outcome is very good. Most of the kids here who have survived AN for some years seem to live a normal life. Maybe she keeps some little strange eating habits, but who of us has not? It takes a lot of time. It is a war with a lot of little and big battles. But you can win that.

"A is terrified of doctors and hospitals, so I have been vowing to help her at home as much as I can. Is this the right thing?"
If you can help her at home thats the best for her. Some of us needed IP to start (me included). But at some day you have to go back home and you have to figure out what works and what doesn´t. You are the person who knows her best. You are the person who loves her most. Fighting AN is very hard. Noone but you would do that for her. You are her only hope. So where is the question? You got nothing to lose!

"Is she being truthful when she says she is full or can't eat anymore or can't swallow?"
They all say they cannot eat more. That is AN speaking. Surely it makes problems to eat normal amounts when you ate like a bird for a long time. Surely she feels uncomfortable. But you will see that you will have the same discussion and the same whining about any amount. We had to learn that if she whines anyway, it should be worth it, so we gave her a portion a normal young woman of her age could eat - and she ate it. The problems about that get less with every day in refeeding. She will get used to bigger/normal portions.

"Is this something I should be preventing? Or just be glad she is eating?"
Difficult question, depending on how much she has to gain. At the beginning I would think be glad shes eating. But eating that much at night (and even raw!) is no normal behaviour. It is ED which tells her to eat at night (why? no answer...). Try to make her eat 3 meals and 3 snacks through the day (every 3-4 hours). Large times of not eating make the ED worse. She loves that feeling of hunger through the day now and she needs to keep her blood sugar level constant. That works only with regular meals. Try to figure out what makes it easier to eat at night. Maybe she could eat at the day if you close the shutters? Figure out wether she is purging that food at night. Think about every possible place. Some kids even vomit through the window or dig it in the garden.

"I don't even know what a restored weight would be for her because she has been underweight for a very long time."
That is a difficult question, too. First you can see how tall she is and what shes weighing now. Than take BMI and look in the percentil curve for girls of that age. Mine is 17, too and she needs to have a BMI bigger than 18,5 says the paper. That means 50 kg for us. But I know that is too low. Most patients need a BMI around 21. You will see it from her behaviour what weight she will need. BMI 19 is a number to start with. Than watch her behaviour. Is she still occupied by ED, you need to go higher. There will come a weight special for each patient when she is calming down and behaving normal and feeling well again. You will get there with every kg she gains. You will see great progress in her behaviour.

"I wish there would be a manual..."
Eva Musbys great book "Anorexia and other Eating Disorders: how to help your child eat well and be well" is that manual you are looking for. It helped us a lot. There are tips in it for nearly every situation you will get in. And there is a manual from James Lock and Daniel Legrange (who developed FBT): Help Your Teenager Beat an Eating Disorder. Both are great help and have a lot of detailed information and plans.

I think your granddaughter is a very lucky and blessed girl to have such a great granny!!! You are not guilty for anything you have not done in the past. We all have discovered it too late. Nobody is prepared for that. Look forward.
Tina72


jean409

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Posts: 6
Reply with quote  #13 
Thank you all so much for your support, I am truly grateful.
A comes to mealtimes and willingly eats a certain amount, usually less than half what I've given her, very slowly. She will stop and claim she can't eat anymore and this is when we get some very challenging behaviours if I tell her she needs to finish. I have to prepare extra and serve it on plastic plates because she will throw it on the floor, yell, cry and scream at me. She can self harm at the table by scratching, biting, or banging her head. Are these behaviours common with ED? How do you deal with them? I find it so hard not to give in to her when she is so obviously distressed. I definitely need to develop my own distress tolerance.
deenl

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Reply with quote  #14 
Hi jean409,

Quote:
Originally Posted by jean409
A comes to mealtimes and willingly eats a certain amount, usually less than half what I've given her, very slowly. She will stop and claim she can't eat anymore and this is when we get some very challenging behaviours if I tell her she needs to finish. I have to prepare extra and serve it on plastic plates because she will throw it on the floor, yell, cry and scream at me. She can self harm at the table by scratching, biting, or banging her head. Are these behaviours common with ED? How do you deal with them?


Completely bog standard reactions in this strange world we all inhabit. But you are doing great for the stage you are at. My son was eating almost nothing and would refuse 100% if we served him or tried to support him. You have a great base to build on. And rest assured it usually settles into a less stressful and traumatic routine.

Some people sympathise calmly to feelings of fullness but insist that no other activity takes place until the meal is complete. We call it 'life stops until you eat' and or LSUYE for short. Others give a food replacement supplement as an option. We all quietly increase the nutritional value of each mouthful by adding things like oils, nuts, cream to meals.

This thread has lots of ideas http://www.aroundthedinnertable.org/post/high-calorie-suggestions-696425?highlight=high+calorie&pid=1299960201

I found the self harm really heart breaking but he needed me to be his harbour in the storm so I acted calm, put my hand over his and told him to stop. For us the self harm faded with increasing weight.

You're doing great, we are here for support and ideas whenever you need.

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.
mjkz

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Posts: 1,212
Reply with quote  #15 
Quote:
Are these behaviours common with ED? How do you deal with them? I find it so hard not to give in to her when she is so obviously distressed. I definitely need to develop my own distress tolerance.


Absolutely normal which sounds so weird to say.  Deenl gave you some great advice.  One thing I did when my daughter started the self-harming behavior was give her a warning and then let her know if the behavior continued, we would need to go to a hospital to have her evaluated for admission to keep her safe from herself.  You said A doesn't like hospitals and you want to avoid them at all cost but if you can't keep her safe, then she needs to be evaluated.  It really helped my daughter keep her eye on the goal and curb those impulses.  She needed to sit at the table until everything I gave her was eaten.  Any throwing of plates, self harming behavior, etc. got a warning and then we would head either for the car to go to the ER or the phone to call an ambulance.  She would cry and scream, etc. but nothing changed no matter what she said or did.  It does take a lot of stretching of our own distress tolerance to watch our loved ones in such obvious emotional agony but at the same time we can't let that derail our progress towards full recovery.

You are doing great!!!  This will likely be the hardest but most rewarding thing you ever do.  I too felt enormous guilt about what happened to my daughter.  I felt like I should have known but remember you are looking backwards with the knowledge you have now-100% hindsight.  You did the best with the knowledge that you had at the time and that is all you can do.  Channel that guilt into steeling your resolve to make sure her future is better than her past.  She is very lucky to have a grandmother who cares so much.
tina72

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Reply with quote  #16 
Hi jean409,
as the others said this is totally normal. Plastic plates are a really good idea! Try to take away everything she could use to hurt herself or you. Especially knifes, scissors...make her wear a bike helmet while eating if she banges her head. Tell her she can put it off if she doesn´t bang her head. Be consequent with eating the full amount. She will scream anyway. If she eats always half of the plate, try to buy bigger plates and put more on. You have to do a lot of tricks against ED, but you will learn them soon.
If she throws food on the floor, put it back on her plate. She must see that there is no way to get out of that. Its very hard the first days and weeks. Try to get some help because you would need a break and than its good when someone else can take over. Try to stay calm and friendly and confident, even if you nearly explode inside. Get out for a minute, take breath and get in there again. Its a hard thing but its the only way and it will soon get better if you got through this first hard time.
Remember that her distress is not normal and ED behaviour. There is no need to be distressed about food. You don´t ask her to do something unusual that she cannot do. You only ask her to stay alive. You ask her to eat a normal meal. Food is her medicine. She will get better soon if she keeps eating.
You are doing great!
Keep on asking whatever you need and whenever you want. There are always nice people here to help, thanks to time shift nearly 24 h a day!
Tina72
Torie

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Reply with quote  #17 
This might sound crazy, but have you tried spoon feeding her? (Like when she was tiny and the adult would hold the spoon.)  I was surprised that it did help my d, at least a little.

Another idea I learned here is to prepare a nice smoothie very early in the morning - preferably a few hours earlier than she would wake up.  Wake her up with smoothie in hand, "Here, drink this," and with luck, she will drink it and roll over and go back to sleep.  It seems that the disordered thoughts aren't fully operational when they are still half asleep.  If it works, that gets the day off to a fab start.

Some here have had good success with rewards, as long as the rewards are immediate.  (One reward for a whole day's eating isn't advised because they can lose the possibility of reward at breakfast, and then the incentive isn't available for lunch and dinner and snacks.)  So perhaps a certain small amount of money credited "to her account" for each successful meal might be worth a try?

I'm just tossing out whatever ideas I can think of in cast I happen to hit upon something that helps a bit.  If these ideas arent useful, please remember that we're with you in spirit.  

Thinking of you.  xx

-Torie



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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
jean409

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Reply with quote  #18 
The helmet is a great suggestion, thank you. She is very creative with her self harming behaviours, she unscrewed the handle on her bedside table and cut herself with the screw last night, so we are going about emptying her room of pretty much everything except her bed and stuffed toys. I managed to stay calm and comfort her, slept in her room with her. I left a snack on her bedside table which she ate during the night, but she didn't go downstairs kitchen raiding which is good.
I think she would hate spoon feeding. She has continence issues and therefore hates anything babyish and I'm sure she would see it that way, but I think rewarding her would be very helpful, thank you. I will also definitely try the early morning smoothie, I can see that working as she is very groggy in the mornings for quite some time.
tina72

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Reply with quote  #19 
You are doing so great, do you know that? You are doing just the right things, sleeping with her, leaving the snack on the table. Try to keep her safe and try to stay calm. It will be better soon. The beginning is the hardest time when ED finds out there is an enemy and it can´t take over her such easy any more.
My d even hurt herself with a paperclip. Try to give her something different to do with her hands, a stress ball to knead or if she is better something to colour out or a handwork. What helped us against anger and tantrum was a punching bag. I used it as often as my d I think...[biggrin]
As Torie said, the immidiate rewarding worked for us. You can say: If you finish your plate we can watch xy or go to the xy. Try to use it not as blackmail, just a reward. If she is interested in money try to use that (mine was not). Try not to praise her for eating. That might make it worse because she will feel bad about that. Try to stay confident that she will be able to finish the plate and that she will be better soon. In the times you don´t believe it try to fake it. You are her mirror. If you lose hope, she will lose hope,too.
I would have been lucky if I had such a wonderful grandmother as you are.
Tina72
EC_Mom

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Reply with quote  #20 
I add my voice to the "You are doing great!" chorus. As mentioned above, we also switched to all-plastic plates, glasses, etc. And as Torie suggested, spoonfeeding. I spoon-fed my d in her bed, climbing back and forth over her as she rolled away, and against her violent resistance, for weeks. I maintained a calm (FAKE) and persistent tone. I stayed up until 1am once until she ate half asleep.

I got a great suggestion here about curbing OCD behaviors like excessive chewing and holding liquid in her cheeks. I got a little bowl of almonds and told her that these behaviors require exercise of muscles and so if she overchewed her food (her OCD made her do 50 chews per bite) I would add one almond for each bite she overchewed (very short term consequence). That additional calorie intake freaked her out so much that she chewed less (and I reminded with each bite "Ok, enough chewing, otherwise here comes the almond onto your plate...). 

It's surreal and hellish, this phase. Full nutrition will bring it to an end sooner. You are heroic and saving her life.
Bontoplen_USA

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Reply with quote  #21 
Jean,this is hopefulmama from the other forum,I see so many great ideas for you here and as you can see there are many layers to your granddaughter illness.it seems you are well equipped to help her obtain a full recovery.Her malnutrition could be why she is not able to handle therapy,as many will tell you therapy is most times a waste if the brain is not working.One day at a time,let me know if I can help.
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bccka5

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Reply with quote  #22 
I'd like to also mention about making calorie dense foods for your granddaughter at this phase. You can get a lot of calories in with a smaller portion. Putting a lot of food onto someone's plate who's been malnourished is daunting and frightful to them (and you). As you move along through recovery and they're handling food better you can start to transition back to normal sized portions for her. Whatever you give to her though, you have to make her finish completely. If you don't, it will allow ED to continue negotiating and make the next meal even harder.

I made A LOT of mac and cheese for my D during this time. I used cream when it called for milk, extra butter, topped it with bacon and potato chips. I made a variety of mac n cheese and portioned them out and froze them. (I actually enlisted my mother in law to help with that task since cooking can become such a chore and she wanted to help in some way.) Another option I liked was a baked oatmeal with lots of cream, butter, eggs, and toasted nuts. Served with a smoothie and either of these meals can pack a wallop. Our doctor recommended any of the Paula Dean cookbooks so I went online and got some ideas there. It's temporary and she won't have to eat like this forever. 

As for the timing issue, someone mentioned this earlier but I thought I'd detail out what we did. Later into recovery, we would set a timer for our D's meals and snacks. If she didn't finish in the allotted time, we would "over correct" and add food to her meal. I would place a few m&m's or nuts in bowl next to her plate and reset the timer for 5 minutes. If she didn't finish, I'd add to the bowl and reset the timer. We would keep doing this until every last crumb was finished plus then the bowl of additional food. It wasn't a lot of extra food, but when she saw me add to it she would panic and start eating as quickly as she could. We spent many meals watching her go at a snails pace only to try and finish everything in the last 5 minutes. Again, I felt like this technique worked better for us once she had some skill sets and we knew she could finish her food in a reasonable amount of time.

It's good to have an arsenal of ideas because you never know what might work on any given day. As long as you get the food in her at this point, that's what counts. It doesn't feel good to make someone eat when they have every excuse under the sun not to. It seems so harsh but on the other hand if their mind doesn't allow them to eat, what is the alternative? It really is life or death. 

She's a blessed little girl to have you in her life!!! 


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Daughter diagnosed with anorexia at 12 in 2013 without having any image issues/concerns about calories or exercise. Hospitalized - 3 days. FBT at home along with outpatient therapy - 16 weeks. Recovered/weight restored - 4 years. Still gaining and growing but has no hunger signs yet.  
jean409

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Reply with quote  #23 
Thanks for all the great ideas - I've ordered a sand timer as I think that could be really helpful.
We had a great discussion - me talking, A typing, today. She said when she was starving at home she used to wait until her parents were asleep and go downstairs and eat for as long as she dared before she got scared of being caught and went back to bed.
This somewhat explains her night time eating, but why does she still think she's starving?
Bontoplen_USA

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Reply with quote  #24 
Sounds like she may be suffering from some PTSD,she knows she is safe but these are learned behaviors,that is how she lived for so many years.Her brain needs to reprogram itself and she needs to learn correct eating behavior.She has no idea what normal is,patience and nutrition will work wonders.Very important,a before bed meal should help her get through the night.She will get there!
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