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edhater

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Reply with quote  #1 
How do I determine my D's target weight, if It is weeks before our first FBT appointment?
toothfairy

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Reply with quote  #2 
Hi and welcome,
Do you have growth charts? 
How old is your D?

Here are a few links to get you started

http://www.feast-ed.org/?page=SettingTargetWeight


https://www.kartiniclinic.com/blog/post/determining-ideal-body-weight/

This is also very good...

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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,  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.
edhater

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Reply with quote  #3 
She is 16.
toothfairy

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Reply with quote  #4 
here is another good link, hope these links were helpful, 

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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,  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.
edhater

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Reply with quote  #5 
Thank you. That video was helpful. So it is "state not weight". My D is eating every meal/snack we put in front of her without defiance (only eye rolls and sometimes tears throughout the meal and long after she's finished). She is clearly depressed, angry, sad, agitated, and uncomfortable. She despises how she looks and wants us to stop "feeding her." Obviously, we can't and won't. Based on appearance, her weight is starting to increase. However, she is 3 weeks out before her first FBT appointment. In the meantime, how best do we handle her extreme moods and discomfort?
EC_Mom

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Reply with quote  #6 
EDhater, welcome to the right place. My two ideas here:

1. Target weight is not something you need to, or even can, know right now. Doctors and nutritionists might give you a number. Most of us here have found that number WAY too low, based on our kids' behaviors. Right now it's about feeding and gaining. 

2. How to handle her moods and misery? Comfort and distract. By "comfort" I do not mean engaging in much ED-related dialogue. I mean murmuring comfort about her feelings, but distraction is really the bigger friend in this. Videos, visits, appropriate activities, whatever best keeps her mind off herself and eating as much as possible (which is hard).
kazi67

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Reply with quote  #7 
Hi edhater
Welcome to the forum that none of us want to be members of, but you will get lots of very good information from
This forum I believe saved my d, as doctors, dieticians and phycologists all managed to confuse and give conflicting advise [frown]
Obviously you need to make sure your d is medically stable by seeing the doc and getting blood tests and blood pressure etc
The main thing is to continue to get your d to eat 3 normal sized meals and 3 normal sized snacks (supervised for an hour after to ensure no throwing up) and it will get better
That’s not to say it will be easy as you are finding out already
In myd case we found cuddles, foot massages, just being with her after eating, a hot water bottle for her tummy, we also got d a kitten which took her mind of herself
You know your d best so trust your gut and do what you think best others will come up with more ideas I’m sure
Read all you can, it will get better, we all know how you feel and my d is doing really well when at one point I never thought I would say that
So of course you need to go to your appointments but the most important thing is food and more food and LOVE!
Hope this helps xx
edhater

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Reply with quote  #8 
Thank you all so much for your advice. This Hell is heartbreaking. It's comforting to know that we are doing the right thing. Feeding. I just feel alone in terms of medical expertise and that I'm doing this blindly based on our own research. So if she's eating, seemingly getting bigger, and sometimes showing glimpses of herself, is that the best we can do right now? Just keep going and wait for the appointments? I wish she could see what we see, but I understand she cannot. Is this all I can do as her Mom and her biggest fan?
kazi67

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Reply with quote  #9 
Hi edhater
Have you had your d see your GP, to get blood tests blood pressure etc?
If she is eating 3 normal meals and 3 normal snacks and drinking and keeping it down that is very good!
Do you have any support?
I wish I could give you a hug, trust me we all know how you are feeling and I have cried a million tears alone in my room
But it does get easier it really does
If you are worried take her back to your GP
I can’t tell you how many times we sat in the waiting room at the docs, I’m pretty sure it’s one of the reasons my d now wants to get better so we don’t have to go sit in a waiting room again :)
xx
edhater

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Reply with quote  #10 
She doesn't purge and is eating and drinking as you described. Our GP did a full work up with the referral to the ED Clinic and he sees her occasionally. I'm actually not thrilled with him based on a few comments he's made "you should give her some control of her eating, this is a disease about control". At least he gave us the referral. I have a fabulous husband who is on board and presents much calmer than I do, however is worried sick as well. We both share the feeding based on who is home, etc., and we eat as a family for dinner every night. Is this refeeding stage the most difficult for D and us as well. Or will it likely get worse?
scaredmom

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Reply with quote  #11 

Hi edhater,
Yes a lot of us had "helpful" -NOT! comments from health care providers. You know better than them, you really do. This forum is the best! It is where I learned a lot and was supported through all the hard ,hard times. My D was 11 going on 12 at the time of diagnosis. She is almost 5 months into weight restoration (WR) and even 5 kg more and she is really doing well. 


The refeeding is really, really hard. We had a hard time too. It is very hard on the child and there were a lot of scary days and weeks.  My D does not really remember some of those bad times. As a mom who took most of her rages, I remember everything (sigh).  It took about 3 months for us to learn how we would handle the refeeding behaviours. We had to learn how we would act at meals and how we would support her and then to learn how to  react to her behaviours. It took about 3 months for her to learn that she could trust us to do what was best for her. It does get worse and then better and then worse etc... Some have kept a log book and put colours that represent good and bad days. It is hard to see the good days when you have your nose to the grindstone working hard, but when you look at your log, you may see more good days over time.  It is not linear, unfortunately. But you will get there.

You wrote above "So if she's eating, seemingly getting bigger, and sometimes showing glimpses of herself, is that the best we can do right now? Just keep going and wait for the appointments? I wish she could see what we see, but I understand she cannot. Is this all I can do as her Mom and her biggest fan?"

This is not ALL you are doing. You are saving her life with the love you have for her. The food is the treatment and you are doing it! I suggest you look up high calorie foods on this site to get more ideas of how to add calories without adding a large "foodprint".  Add oils to sauces, whipping cream to yogurt, butter and cheese to anything you can. All of us here have found very creative ways to pack a great caloric punch to things you would never dream of [biggrin] The way out is through this difficult time. You and your H sound like a great team! 
Take time to take care of yourself .

Are there other children? Do you have other family members to help distract her? Do you have any support system for you and H?  Keep asking questions and reach out at anytime. 

Big hugs!!

edhater

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Reply with quote  #12 
You are all so kind. What lucky sons and daughters you have because they have you.

I like the idea of a log book. So I can see the number of bad and good days. I find her mood determines my mood no matter what. It is impossible to have a good day if she isn't. I am also her "go-to" for rage and sadness. But, when it is her and not ED, I feel her love overwhelmingly, which helps.

My husband and I are a good team, but this is taking a toll on our marriage without question. Whisper fights and painful accusations amidst the tension are common.

There really isn't help (friends and family), with a full understanding of the complexity of our situation/ED, that we can lean on. It's just us. There is a younger sibling who is scared, but strong. She doesn't yet have a full understanding of it all. However, she is learning and optimistic. Sometimes, she's angry because this house has literally turned upside down.

Will it be obvious when she is weight restored in terms of her "state not weight". Will that be when the good days far outweigh (no pun intended) the bad? When and how will she ever become comfortable with her body?

scaredmom

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Reply with quote  #13 

Hi again,
We too don't have friends or family that understand ED like we do, but you can harness their goodness to help you distract your ED D or your younger D. They can help provide fun for your younger child and this can help especially as you state that the house has literally turned upside down.  

Yes it is hard on the marriage! Get help if you need it. It is a long road and you want to harness the strength of your relationship to get you through and have a good relationship later. 

"Will it be obvious when she is weight restored in terms of her "state not weight". Will that be when the good days far outweigh (no pun intended) the bad? When and how will she ever become comfortable with her body? "
You will see her state get better over time. Some have had to wait months after WR to see the brain healing. Yes, then there will be so many more good than bad days[smile]. I only find in the last 2 months ie 3 months after her first weight goal and now 5 kg more, do I really see her real self. But it was coming back all through refeeding bits at a time.  Like you said above, you  see glimpses of her real self.
Yes, when they have a bad day, we can too.  Find an outlet that gives you some joy. I wish I had done that right at the beginning, but I think I was so overwhelmed and exhausted, I only concentrated on feeding D.  Even in hindsight I think the fear I had paralyzed me. Getting comfortable with her body does get better over time the feeding helps the brain too. We just fed D through that and never discussed it and then it just went away. It was odd, even now with her weight she does not discuss her body. I don't question it, I am just so glad she is where she is now. Others have their own stories about the body dysmorphia.

You are doing a great job!


kazi67

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Reply with quote  #14 
Hi edhater
It so good your h is on board with you, so very important you are both a united front, and important to not argue in front of d
We are all human though and my h and me are guilty of it on a few occasions but best to support each other 100 percent
I asked my h to please just b quiet if he couldn’t agree with me in front. of d and then we would discuss the issue behind closed doors
Like scaredmom I became exhausted and overwhelmed it is important to look after yourself although it is hard
The body dysmorphia seems to be better but we dont discuss her shape or weight, even saying “youlook good” can be triggering and interpreted by the child as “oh I look big/fat” we ask how are you feeling as opposed to how are you looking and asked friends and family to ask the same
There is a very good video on you tube but I’m not sure how to copy it you might find it useful it’s: Eating Disorders from the inside out Laura Hill you can google it
X

tina72

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Reply with quote  #15 
Hi edhater,
a very warm welcome from Germany!
Two just throw in my two cents:
Yes, it is state not weight. Just feed her until you see change in behaviour and do NOT stop after that.
Yes, distraction is the best to do at the moment. Mood will get better just by gaining weight.
Yes, get her to your GP and get blood, heart and bones checkt. AN can cause very scairy blood tests and her heart can be weak and she can get osteoporosis, so she might need some meds for that. We are 1 year after start now and my d still needs meds to get her blood and bone tests right. Be sure everything is tested and not only that what insurance will pay (here in Germany they don´t pay bone check if you are not adult).
Maybe change that GP because if he says it is about control he knows nothing about EDs. ED is not about control.
Get help from family where possible. If they cannot help with ED d, they can help to distract the sibling. Or help you in the garden. Or with the laundry...
You will see more good days than bad with WR. It takes time to heal the brain. It might get worth around WR for some time, some here called it "extinction burst" which I think is really good expression. She will get more comfortable with her body, but that needs time. My d today is o.k. with her body most of the time, but for example has still problems to go to gym class with sports wear.
Ask whatever you need, there are always nice people around here nearly 24/7.
You have found the best place here! This forum was our lifesaver one year ago.
You are not alone!
Tina72

hopenz

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Reply with quote  #16 
Hi edhater, so sorry you had to join us here, but welcome.

My ears pricked up at your mention of your d's younger sibling and I wanted to make a suggestion.  When we started refeeding my d (then 13), we were encouraged to include her younger brother (then 10 years old) in family meals.  Our FBT therapist felt he had a role to play in helping to distract her with board games etc during those difficult mealtimes.  For the most part it worked for my d, but at a cost to my son and his relationship with his sister.  Almost a year from her diagnosis, and a few months into full weight restoration, he holds a lot of negative feelings towards her (he is unable to separate the ED from his sister).  He is hurt, resentful, angry and grieving for his relationship with her and our lives before AN.  Now that meals are generally so much easier, our family mealtimes have become once again an important part of family life for all of us.  However, I do wish with hindsight we had done more to protect him from the worst of those early mealtimes.  

Perhaps you can consider having one parent eat elsewhere with your d's younger sibling?  Refeeding doesn't last forever, thankfully!
Torie

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Reply with quote  #17 
Quote:
Originally Posted by edhater
Is this all I can do?


All?  ALL?

You're doing GREAT!!!

Keep going. xx

-Torie

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

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Reply with quote  #18 
EDhater, you are doing so amazingly well, you deserve a parade--seriously, we here know how bad it is and what it means to have your d eating despite ED's awful resistance.

Improvement of state and brain and behavior happen SLOOOOOWLLLLY, with slips and lapses and bad times, and sometimes even worse times. And then, sllllooowwwly, you will realize that things aren't AS bad. And on and on. I am here to tell you, it will get better. 

Meanwhile you need to take care of yourself. I took antidepressants and tranquilizers. It's hard on marriages; can you agree in a way to put marriage-care on hold while this is at its worst? Like you will get back to that, ,but right now it's just too much?

For the sibling, we got our younger one his own therapist just to talk about the stress. Our kids actually are closer after all of that awfulness. We also split the kids up, basically; me with sick d and dh with healthy s. I agree it's important for the younger sibling to have some non-ED-impacted time, in fact as much as possible. Our s spent way too much time on video games during those days. But better that then sharing all our fear and stress.
edhater

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Reply with quote  #19 
I am so incredibly grateful to you all for your kind words and support. I'm doing everything you recommended and reading everything and watching every video. I'm here, listening. I'm thankful for your encouragement. I am amazed at how powerful ED is... Literally amazed. Thanks to every single one of you for your words of wisdom and inspiration.
Torie

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Reply with quote  #20 
Edhater, never forget that we are with you in spirit.  And that it does get better.

It's such a weird world when your family is pulled down the rabbit hole.  So weird.

Please feel free to ask all the questions you like. xx

-Torie

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

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Reply with quote  #21 
Oh, not sure if you got a reply to this one: "When and how will she ever become comfortable with her body?"

This is one of the really weird things.  She will likely get back to being reasonably comfortable with her body when she has been wr for a while.  I say "reasonably comfortable" because, sadly, I don't think I know any females who are completely comfortable with their bodies - least of all, teens.  

During the early days, someone here gave me the good advice to try to take it one day at a time and not look too far ahead.  So many things that are problems now will melt away as time (and weight) goes on.

Keep swimming. xx

-Torie



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