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mamabear

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Reply with quote  #26 
She will come back to you. You will be closer than you were before. The ED does EVERYTHING POSSIBKE to torture both her AND you to get you to back down on food and movement. I promise you that your daughter deep down in there knows you are saving her and you are fighting for her right now. And it is great that you backed your husband up and held firm on the peanuts!
And if she wants to be ready for school then she has to eat. Period.

And your therapist is completely right. Talk therapy is a total waste of time and money right now. Frankly- most of us have found our children don't even remember much of refeedkng days early on. My daughter doesn't remember throwing a plate of spaghetti at my head. She doesn't remember screaming at me about just letting her die.

Keep going. I know it's so hard. Imagine this thing in your daughter that you are taking to war. YOU LOVE HER .YOU WILL GET HER BACK! I used to slap my cheeks and look in the mirror like a boxer and give myself pep talks. I also used to go to the woods and break giant sticks against trees and scream.

You truly are doing great. Get the weight on as fast as you can. You will see changes. I promise.

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scaredmom

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Reply with quote  #27 

I am truly grateful for all the replies that seem to come just when I need them the most! We truly must be connected on some wave length that binds us... maybe our kids?(smile).
I live in Canada and have seen on other posts/threads that there is benecalorie? I called
one pharmacy and they did not have it and did not have a supplier for it. Is there anyone who knows where I may buy some? and is it by prescription only? I read it is 330 cal for only 1.5 oz that is incredible. If we added that even a few times per week... I can only imagine.
Nice quiet evening here, I think we are all tired.

The discussion on the therapy for her right now was great. I was really trying to get her some to make my life easier at home. But what was said by mamabear and Torie  and IhateED, and a few others makes great sense. If her real brain is not working well, how could you talk to it. I like the analogy of talking to an alcoholic when still drunk! I see the visual and it crystallised the message for me!

Moving forward, feeling supported by all of you.
Love, peace and strength to all!

Torie

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Reply with quote  #28 
I wonder if amazon US would send benecalorie to you - it doesn't look like amazon.ca has a good option right now.  You could try calling Nestle's toll free number, or if you can't do 888 numbers from Canada, I'd be glad to call and ask them for you.  Walmart sells it, but I don't know if you have Walmart there. xx

-Torie

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deenl

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Reply with quote  #29 
Following the same tip from Torie, we ordered Benecalorie from eBay in the States and they send it to us in Europe. We couldn't do without it.

Warm wishes,
D

Edit: It is best added to cold food. Don't add it to the blender if making a smoothie, stir it in afterwards. When the food is warm it tends to get oily but with a bit of trial and error it is still possible. We add it to soup (the twice a day standard in our house) even clear soups can take 1tbsp but lentil and other pulse soups can take up to 4 tbsp. Don't have the food too hot though and stir well. I began adding 1 tsp to everything I could and kept gradually increasing to see how much I could get in. The open pack stores fine in the back of a high cupboard for a couple of days.

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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.
EC_Mom

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Reply with quote  #30 
I agree with everyone! My daughter said the most vile, venomous things to me. She frightened me with threats to our relationship, would she ever care about me again, that I ruined everything in our relationship. 

Maybe it also helps with your own compassion to know that the way she talks to you is the way that ED talks to her, saying vile, hateful things that make her feel terrible. In fact sometimes it switched from her saying hateful things about me to about herself, which was even more painful for me! 

Just know that it will pass, and she will be grateful and closer to you than ever. That's what happened to us.
scaredmom

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Reply with quote  #31 

Hi EC_Mom, Thank you for letting me know what you went through. I have been better the last two days understanding the thoughts in her head are not "real".  We went to the pediatrician today and I know when we go she gets so mad and takes it out on me! So today I remembered what happened last week - when driving to school after the appointment she was so mad she opened the car door! She said there was no point in living if everything was taken away ie gym, school, (she still goes and does really well at eating at school the teacher and principal watch over her a bit) activities etc.. So today I just said "yes" to all her angry words "When are you going to get to school, drive faster, you are mean to me etc..." and she settled down in the 15 min it took to get to the school. I think I needed to do that for me more than her. When I am cool and confident, it seems to go better.

Interesting we were driving to school at the time for morning snack, SHE REMEMBERED and said "oh I need my snack" she dug it out of the bag and ate the yogurt... then she said a few minutes later " Oh I forgot my to drink my juice" I did not have to say anything.... WOW!! I know it is still early days and I am to scared to feel that things are that much better, but it is nice to know I can remain cool when she is feeling so upset.

I don't know how you all had the fortitude for this war. I am trying to remember all of the posters' words that she will come back to me, in time.
 

EC_Mom

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Reply with quote  #32 
Yes! Great job!

Cool, confident and neutral are best in the face of ED anger and agitation. Even if you have to rethink a plan, do it with utmost calm confidence: "I'm going to put dessert away for now and you will have it later."

Meanwhile I took tranquilizers and listened to Eva Musby's meditations. And came here. It will get better, just keep going and at least in front of your daughter fake total calm confidence.
mjkz

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Reply with quote  #33 
Quote:
I don't know how you all had the fortitude for this war. I am trying to remember all of the posters' words that she will come back to me, in time.


Great job.  When my daughter would get started on how I was ruining her life, I'd remind her that ED was ruining her life and how I was waiting for her to stop listening to ED and come back to life.  The more she went after me, the more I would point out that it was not me but her ED that was taking all these things away from her. It really helped her focus on what to get angry at.  She still has plenty of anger towards me but it helped to be able to focus the anger where it belonged and remind her that life was waiting for her on the other side of ED.
Torie

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Reply with quote  #34 
I agree with mjkz.

I don't know if if helped my d when I pointed out that it was ED - and not me - who was responsible for causing __ (insert current complaint).  But I know it helped ME.   And, at a minimum, I think she disliked hearing this so she was less likely to say the things that triggered this response from me.  

Keep swimming.  xx

-Torie

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

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Reply with quote  #35 
Scaredmom, I agree with everyone who says that your daughter will come back.  I thought my relationship with my daughter was ruined forever, but really, it was my relationship with ED, my enemy, that caused all the friction between my daughter and me.  When she was sick, I'd come to this forum and dear Charlotte would say over and over again, "Be a rock in a frock" and "Put on your big girl pants."  She made me smile, and then I'd go to battle with my poor daughter's illness, and I'd just take everything ED threw at me.  I felt like a brick wall being pelted with stones, but I tried to let them bounce off me.  It was hard, but we got through.  Today, my daughter is 21 and we have an awesome relationship. You're doing an amazing job.  Keep going.  Don't look for applause from her now, because you won't get it.  But we'll give you all the praise and support you deserve. 
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The Irish tell the story of a man who arrives at the gates of Heaven and asks to be let in.  St. Peter says, “Of course. Show us your scars.”  But the man replies, “I have no scars.”   St. Peter shakes his head and says, “What a pity. Was there nothing worth fighting for?”

scaredmom

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Reply with quote  #36 

I may need to get the benecalorie from the States. I will use the Amazon.com.

Exhausting day for her- two appointments. In the morning pediatrician and then the therapist.. Pediatrician said up 0.4 kg in one week and therapist says down (from three days ago) 0.1 kg??!! Now I am scared.... I know scales are different and hoping the 0.4 kg up is the real one.

She is so anxious right now, dad is mad at her (I am trying to calm everyone for supper now) we are about 50 min late for supper now and she is crying...

I pray for "plain old and average days" no more drama. I really have had my fill!

I feel you all standing WITH ME and FOR ME. I WILL GET THROUGH THIS!!!!!
XOXO

mamabear

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Reply with quote  #37 
If your D is not gaining it is time to ramp it up. It is totally doable to put 2 pounds plus a week on.
Make oatmeal with heavy cream and add butter and maple sugar and dried fruits. Add canola oil into yogurt and applesauce and pudding. Make scrambled eggs with heavy cream in butter and add cheese. Make dense pasta sauces. I have an awesome recipe for " nutloaf" which literally is like meatloaf made of pecans and cashews that is delicious! One of my meat eater friends favorites! A daily smoothie/shake is your best friend. Many of us with a child your age have found that it takes more food and cals to see gain as time moves on. Their bodies are using it all not only to put on fat, but to repair muscle,organs, and fuel puberty. My daughter wasn't gaining on 2800 in the hospital. We got her home and quickly jumped to 4000,5000,6000 for 2.5 years. I'm not telling you this to overwhelm you- but you need to understand that she is going to need more and you are going to need to push. The only way out if this is through and the most important thing right now is GAIN.

What " therapy" is she doing? If it is " talk therapy" it really isn't worth your time or money. Their brains are not functioning at this point. The brain needs fuel and time to heal to have any therapy be useful. You may even find your daughter someday will not remember much of these days. Mine doesn't.

Are you eating lunch with her?

You CAN DO THIS! You are doing so well! Keep pushing. Keep doing whatever you have to to get that weight up and keep it there.

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scaredmom

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Reply with quote  #38 

Hi mamabear,
Sorry if I miscommunicated. D is not in any type of  therapy. We have two teams it seems. We have the medical team (MD and dietitian) and the FBT Mental health team that has an RN,social worker and dietitian at our disposal. All at no cost.
The social worker sees her once per week to do weight. Today we had both the medical appointment and the social worker appt and the two weight differences were very different.  The social worker then talks to me and husband to see how we are doing and supports and guides us.
4000+ calories per day does sound overwhelming. I am trying hard to get 3000+ this week and seem to be doing a decent job so far.

Without fighting with her, I know we won't get through it. Tonight was good example, snack in the evening, she knew it would be trail mix and fought me about amounts and the cup I was serving it in. She threw them out about 3 times ( I think) and every time, I put the trail mix back. She fought hard and I just stood strong and was quiet as she knew I was not going to back down. (She does not like me speaking when she is eating a stressful meal so I am silent and only say "you will eat it and I will be here as long as it takes") took 15 minutes and a lot of anger and she ran out the door but  it was eaten and juice was done too. I really don't enjoy this.

 Now to think about 4000+ calories, seems like a difficult task for me ( scared of more fighting). I like the suggestions of adding the hidden fats (oil and butter) to common foods she will eat. I will definitely do that.I will have to push through knowing that the changes I make will be met with fights. I am understanding that that is what is needed.  Learning lots from everyone.


Torie

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Reply with quote  #39 
Quote:
Originally Posted by scaredmom
I will have to push through knowing that the changes I make will be met with fights. 


Most here find it is best to avoid discussions of ingredients, calories, etc. and keep D out of the kitchen during food preparation.  Your job is to plan meals, cook, and plate - your d's only job is to eat what you serve (every bite, sip, crumb).

I was amazed to find that if you stir it in vigorously, a tablespoon or two of canola oil will vanish into things like yogurt or soup.  You can't even tell it is there.  And if you add a little heavy whipping cream to her milk each time, you can gradually add more.  Butter both sides of the bread when you make grilled cheese.  Buy premium ice cream (amazing the difference in calories), full fat yogurt, etc.  Takes forever to read all the labels on everything from bread to soup but it all adds up.

The more calories you can add without adding volume, the easier it will be. (Yes, I see that "easier" is the wrong word entirely, but you know what I mean.)

Keep up the good work! xx

-Torie



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MarcellaUK

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Reply with quote  #40 
It's great that you have both medical and therapeutic backup. Family Based Treatment shouldn't just be the family struggling alone desperately asking for some, any help.

On the other hand is there any way the two teams could work together better - like maybe having only one team weigh and share the knowledge with the other so that both medical and therapeutic decisions can be made on one set of accurate, true (it is truly amazing how many little tricks AN can force the patient to use to deceive the scale) measurements? I wouldn't have thought it mattered exactly which team - manualised FBT suggests it should be the therapeutic team and open weighing is part of the treatment, on the other hand if the medical team are taking bloods, blood pressures and other medical measurements then they could also weigh as part of the routine medical check-ups involved in recovering from a serious medical illness.





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Foodsupport_AUS

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Reply with quote  #41 
You are learning so fast with this, and really doing a great job. 

The frustration of two sets of scales unfortunately I think just increases your D's anxiety. We used to have this with movements between hospital and outpatient services. Two weights the same day an hour apart, never the same. Is there any way you can convince them to just weigh her on the same scales, then you can just use that one and don't have to go through the angst of trying to work out if she has gained as expected or lost weight? I would go with the most frequent weighing site, and then just let the others know if she was weighed the same day what she weighed. 

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

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Reply with quote  #42 
Thanks for the advice. The two clinics are in different areas of our city. She is always weighed blindly and only told that she is doing ok or not. My daughter does not know how many calories she taking. She is not allowed in the kitchen.
MarcellaUK I think having only one team weigh her is a great idea. Better for me too. I will suggest that to the team. I prefer the pediatrician doing it , to be honest.

Starting my day, scared to death right now.

mamabear

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Reply with quote  #43 
I truly didn't mean to overwhelm or scare you! You are doing SO well and it is awesome how willing you are to listen to all of our experience and advice. My main point is that this is hell- and you want the hell to be as short as possible right? So the faster the weight gain, the faster her brain starts to right itself and the faster you get through it all.

Channel your fear into intent. Use the power of it to ramp yourself up against ED. I used to say out loud in my bathroom things like " I'm going to kick your ugly ass today ed. Bring it. Show me what you got. I love her fiercely. You will not get my baby." And know that EVERY time that food goes in you have won a battle in the giant war. I know it feels like forever. I know that pit of angst in the chest the second you get up in the morning after unrestful sleep. I promise you- it is possible to beat this. You are going to beat this. My daughter is living proof that food is medicine.

Love to you. Now go kick some ED ass!

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scaredmom

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Reply with quote  #44 
Hi mamabear,
I am strengthened by your words of encouragement. Yes I want this done yesterday.
Feeling better with good game face on.
Torie, your tips on adding the oils, butter etc.. I love. Making quiche tonight with ++ cream and cheese. I want to do the ice cream, but she is very anxious with change. So we try a "new" routine (ie different food) every week or so. Tonight we add in a smoothie to evening snack.

Do you eat the food you prepare for your child? My stomach is upset and can't eat much in the day sometimes. Seems like an occupational hazard at the moment. I keep her portions up compared to my other children's and my husband's and mine.


Torie

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Reply with quote  #45 
Quote:
Originally Posted by scaredmom
Do you eat the food you prepare for your child? 


Pretty much.  But I also pointed out (repeatedly) that different people have different nutritional needs, and her own needs will be different when she's my age than they are today.  xx

-Torie

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scaredmom

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Reply with quote  #46 
Doing ok  overall I think
Do any of you show the child any videos on their ED? I wonder if it would be harmful to the child early in recovery? Would hearing others' stories be too overwhelming for her? 

She eats everything but puts up a bit of argument. She is going to a friend's birthday party today (the mother knows her issues and is willing to watch her eat) and my D knows if she does not eat well, there will be more at home to supplement. I am worried about this.... but i think she really needs the social time too. I feel she has been a bit isolated and bored.
How did you all manage this? 
Torie

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Reply with quote  #47 
Quote:
Originally Posted by scaredmom
Do any of you show the child any videos on their ED?


I didn't.  Her brain twisted everything around too much.

Quote:
Originally Posted by scaredmom
She eats everything but puts up a bit of argument. She is going to a friend's birthday party today (the mother knows her issues and is willing to watch her eat) and my D knows if she does not eat well, there will be more at home to supplement. I am worried about this.... but i think she really needs the social time too. I feel she has been a bit isolated and bored.
How did you all manage this? 


It's so tricky.  I agree that it's important to keep them socially engaged.  OTOH, no one else ever seems able to provide the needed level of supervision.  If she will just be there for one meal, it should be OK.

I tried to arrange events so that I could be there - sometimes I felt I was feeding an army, but it was worth it to make sure my d was socializing and eating.  Maybe an angle for the future?

Keep up the good work! xx

-Torie

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

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Reply with quote  #48 

Thanks Torie,
Just in the middle of big fight with her. She did not want to eat lunch" too fatty and if I am going to have pizza at that party I won't eat that for lunch" well she threw the quiche three times... I pick it up She said she would eat a bagel.. but  I put the with yogourt too. Then she ate the quiche yelling and screaming. Hitting and throwing things in her room A small dig in the wall, broker her hair straightener.. But now fighting for the last 45 minutes... She is yelling that "you did this to me- I won't eat at the birthday party" Well then I said she will not be able to go to the party. 
I am so sad for her - not a lot of friends right now to hang around with- She says she hates us. Only when really mad does she talk about not living- She has not been suicidal. She was so happy about the birthday party but she thought she would eat less at home and "make up" at the party! Even though I said that would not be the case.

I know there are bad (REALLY BAD) right now and good times

 

scaredmom

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Reply with quote  #49 

This is definitely a bad day. 

Please tell me that this will pass. She has been pretty good for the last few days. This feels like such a set back and hard to believe it will be better

ed_newbie

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Reply with quote  #50 
I had very bad days. And worse than very bad days. I made it through and so will you. Keep going. Take a time out to regroup. Deep breathing, a good cry in the shower, do whatever it takes to keep yourself afloat. We are all thinking of you and sending big hugs.
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"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

14 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and pushing our way through puberty and rapid growth. 
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