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hopeful2017

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Reply with quote  #1 
Hi everyone,

My daughter, almost 14, 5' 6", developed an ED roughly 6m ago. She struggled with being heavy thru her childhood, and we recently relocated to Ottawa Canada about 6m ago. In this shift, we added new school, new community, etc. Lots of uncertainty, and my daughter found control in restricting her food. Long story short, she went from high 130lbs to 103lb in a matter of months. We quickly seeked support from a local community youth therapist that has a background in ED, and we tinkered with the idea of taking her out of school, but decided to keep her in school. We decided not to tell her teachers, because she didn't want to feel like the outcast (she is a perfectionist and begged us not to, as this would destroy her). So we've relied on trust that she would eat what we give her at school for lunch and snacks. Her fam dr was never supportive - totally clueless- and said it was teen anxiety. We have an appt with a pediatrician on May 4th that is 'ED friendly' according to the youth therapist we're seeing. 

We found a local psychotherapist here, who saw us right away, and gave us a meal plan as a guide to start - I felt helpless as to what her nutrition should look like, so this was a helpful tool. It broke it down to things like 6 servings of grains, 6-10 servings of f/veggies, etc. We followed this plan, first we struggled with D measuring everything by the teaspoon, which we rid our self from (thanks to replies on this post) and now we're sticking with the basic plan - i.e., 6 grains, 2-4 dairy, etc. We thought we saw lots of improvement. D's weight went to 110lbs in the first few weeks, and since then it 'stuck' there. I convinced myself that since she's feeling and looking 'healthy' (even tho physically she looks abnormally thin) and her ED seemed under control (most of the time), that focus on weight gain was not necessary. Our psychotherapist didn't push for anything different since she seemed to signal she was getting better in the sessions (she rated her ED at 4 in a scale of 1-10, 10 being worst a couple of weeks ago).

I recently posted on the forum because I felt lost. I had given control to my daughter to prep her own foods, have say in what veggies and fruits to eat, etc. as long as I monitored it most of the time (i.e., phase 2 of FBT) thinking that she yearned for and needed the freedom. And that she was ready. I did not realize that it was the ED planning things out. My husband was against it, but I didn't listen. It was a premature step on my part, caving into her desire and my desire for her to be past ED. My daughter is now stuck at servings (e.g. no more than 6 of grains a day), cries that she doesn't want to eat when she's not hungry, afraid that her 'stomach will stretch', but also yearns to be rid of this disease in a snap (which I know won't happen). She tried to push thru ED by forcing herself to eat what she's told and has for the most part complied with what we tell her. She tried not to show the anxiety so we can 'calm down' and feel that she's recovering. So part of her wants to heal fast, yet the ED part of her doesn't want her to 'get fat'. Last night she had a melt down about getting fat, and cried for a good hour, and this is when I realized I needed to press the reset button and take control of her feeding again. It was a premature step to allow her to take some control back, even though it's exactly what she wanted me to do (and begged, begged for it.) I also realized that weight gain is not an option. 6 weeks in and apparently, unlike what I thought, we just barely scratched the surface.

Thanks to a member on this form, and some more educating myself on the phases of FBT, I've decided to press the reset button at 6weeks in, and try this again the right way. 

I understand what I'm aiming for is weight gain. I understand it's part of the healing. I need support and help tossing aside the meal plan and how to institute a high calorie diet (not sure how many she needs a day to gain weight at a fast speed?). She doesn't want to eat above normal portions that we eat, and I don't think she should eat 'more' so I'm trying to figure out how to make her meals packed with calories. Aside from shopping for high calorie items in each category (e.g. bread, whole milk, etc.), what else can I do? I tried to squeeze butter in sandwiches, but she gagged. She's never done salad dressing b4 ED, so I don't add that. Is adding in high calories shakes to supplement "normal" meals ok, or is it cheating? I want to help her regain the weight she lost. It's our only missing piece of the road to recovery.

Here's what her day looks like now:
breakfast (usually oatmeal, cold cereal, or PB sandw with banana), snack (usually a stick of cheese and granola bar or wheat thins), lunch (usually a sandwich and 1 veggie, like peppers), snack (usually a fruit), dinner (whatever family is having, but will consist of 1-2 grains, 2 veggies and 4oz of protein), and last evening snack (usually a whole milk yogurt tube and 3 cookies of her choice).

Yesterday I made her a 3/4 cup shake using 1/4 cup heavy cream, 1/2 cup milk, 2 tbl honey, 1 tbl PB, 2 tbl coconut oil, and a tbl of coco powder. She liked it at first, gulped it down, and towards the end started to gag because the ice was making the coconut oil and PB clunky. She wanted to puke, but got past it. 

Thank you for your advice. I'm weak and somewhat defeated, but still hopeful.
Kali

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Reply with quote  #2 
Hi Hopeful 2017

There is a high-calorie thread on this board which has recipe suggestions for foods during refeeding.

https://www.aroundthedinnertable.org/post/high-calorie-suggestions-696425?&trail=800#gsc.tab=0

Hope this will give you some ideas! You are on the right path. Congrats on getting your girl up to 110 quickly and seeking professional help. Keep asking questions on this board and experienced parents will hop on and do what they can to help.
Smoothies/Shakes will help so see if you can get her to drink one each day.

Best wishes

Kali

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myson

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Reply with quote  #3 
We all try so hard to do what's best at the time. They are so good at convincing us that they are ready for this and that. We all learn from what goes wrong and what goes right. She's lucky to have a great support like you around her.
Hope things move positively forward.
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hopefulmama

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Reply with quote  #4 
The great PHP/IOP we were in had the idea that you build a "normal" system of 3 meals and 2-3 snacks a day that will be a model for them their whole lives. Some parents on the forum have had success adding in heavy whipping cream to add calories.  For example, you could do that in your daughter's oatmeal for breakfast.  Many have had great success with the high calorie smoothie as already discussed.  That would then someday - long down the road when weight restoration has been achieved and maintained - be replaced by a regular snack not so dense in calories. Another easy way to add calories is to include a calorie beverage at every meal, milk, juice, etc. Choose snacks that are dense and calorie rich.  The high calorie thread might really help with that. 

It can be really tricky when you are trying to feed a family as well. My d would always say that I needed to eat the same thing that she did while she was gaining weight.  She would ask why I was only having one of something when she needed two.  For awhile I would eat the exact same thing to make it easier on her.  We changed that though because she needed to learn that she has to do what SHE needs to do to be healthy and that may always look different than what other people need.  I was coached to say, "I am a middle-aged woman and my food needs are different than yours" or a little tougher was "I don't have an eating disorder so I don't require as many calories." This is a process that required a lot of trial and error for us and my d was almost 4 years older. The keys are:

1 - Don't negotiate with ED.  ED is a terrorist.
2 - Food is her medicine.
3 - Validate her distress, but be firm and then change the subject.

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Enjoying my 21 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
hopeful2017

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Reply with quote  #5 
she has thrown that same line at me many times .. about why she has to eat differently, and then like you I started to eat what she ate, but then realized that wasn't helping me, and it was attaching her to something I couldn't maintain (like mirroring what mom eats) and we're both two diff ppl with two diff needs (hers being to gain and mine being to losing). thank you for the advice on what to say. 
hopeful2017

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Reply with quote  #6 
@myson, thank you for your kind words. parenting was never easy, but this is definitely as hard as it gets, at least it certainly feels this way. the emotional toll I'm sure many of us endure in this is heart wrenching. but its so great to have the support of this forum and it's so great to see so many posts of recovery.

@kali, thank you for the thread very much.
Kali

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Reply with quote  #7 
Hi hopeful 2017 and Hopefulmama

I have to admit that I caved on the ED complaints about why was I eating differently than d. My solution is to eat what she eats. Our plates look the same. Yes, I've gained some weight and did not tackle d's Ed thoughts on this one....but....I guess I chose my battles carefully, and there were SO many others to choose from that this one seemed acceptable to me. I was also modeling correct portion sizes for her since we got to the point after many months of refeeding, meal supervision and weight restoration of having her finally plate her own food and choose correct portion sizes. (Hopeful 2017 my d. was older than yours when diagnosed, I would not recommend having your d. plate her own food at this point)

Kali

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Torie

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Reply with quote  #8 
Quote:
Originally Posted by hopeful2017
She doesn't want ...


I would urge you to ignore concern about whatever it is she does or doesn't want.  She is not rational about food/calories/size/shape/etc.  right now.  She. just. isn't.

The most enlightened thing my h said during re-feeding was: "Whatever ED doesn't want is exactly what I do want.  If she doesn't want milk, I'll make sure she gets plenty at every meal."

So my suggestion is to disregard what she does or doesn't want, except in the case of historical preferences.  Just set it aside for now.

I'm glad you dumped the idea of this many servings of this and that many of that.  What matters most - by far - is sheer number of calories.  Veggies don't have many, so it takes a heap of them to equal a bite or two of something denser.  So for now, offering smaller servings of veggies will help get in the needed calories without creating a mountain of food.

You're doing great.  So proud of you for getting back in the ring.  Keep going.  xx

-Torie

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iHateED

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Reply with quote  #9 
Hi Hopeful,

I could have written the same post several years ago about me wanting to believe my D was doing well and that it was ok to let her make small choices.  After 2 months PHP and 1 month IOP, I thought she must be doing better by now and what could it hurt??  Wrong!  I did not realize at the time how this was all the ED trying to take back control.  So it's great that you have decided to hit reset and try this again with no choices. 

I also found that I needed to increase calories in as small a footprint as possible to keep portion size manageable.   For breakfast, I would make the oatmeal with heavy whipping cream (HWC) or at least half whole milk and half HWC.  Add in some nuts or granola to the oatmeal for a crunch!   Most cold cereals do not pack enough calories, so I would suggest granola instead.  You can find so many tasty varieties that hopefully there will be some she likes.    Granola bars themselves do not have very high calories because they usually are filled with other ingredients.  Have you tried Cliff bars or other high calories bars instead?   And for the yogurt tube, I would put that in a bowl and add some crunch to it with nuts or granola.

My D loves humus so I would use that as a bread spread on sandwiches because she never really liked butter or mayo.  I would add canola oil to the humus and give it a good stir and then spread it on a high calorie bread with some cheese slices and turkey.  I can understand you D gagging a little on the smoothie with coconut oil as that does not blend in as well and gets very sticky. 

Try again with the smoothie (search for some good recipes on this forum) and get them going daily!  They were the key to my D's recovery.  Also try to avoid measuring out to give her 3/4 of a cup.  Just pour it in a normal glass and don't worry about the exact size.  ED will try to take over and make you measure and fill to the same line every day so don't make a big deal about it.    My smoothie was HWC, some fruit juice, a very high cal yogurt like Liberte or Nosa, canola oil and some frozen fruit all thrown in the blender.  They were pretty good! 

Hang in there!  You are doing great!  [smile]
hopeful2017

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Reply with quote  #10 

hi everyone,
feeling tired again today. i get a boost of energy from the forum, but then my d drains every bit out of me at night [frown]

i need some advice on how to approach d with the fact that she has gain weight and eat. At first I made the mistake of giving her a goal of maybe 5-7lbs, but as I got back to reading and research, I realize she's prob got much more to gain than that. Even tho she was ok with the idea of getting a shake in, as long as we got rid of two snacks during the day (e.g. the cheese bar and yogurt - 160cal together). But now that we've done a reset and gone back to me refeeding, and she eating, she's having a VERY difficult time coping. 

the last couple of days have been sooooo hard on me, her, the family. when i said I was resetting and starting FBT from the start, with the aim of gaining weight this time, it has caused extreme panic and anxiety in d.

"just give me one more week under our current plan, just one more week" she cries and pouts, and jumps around, opens closes doors, up and down stairs, you name it. she sits infront of me for hours begging and begging. crying her eyes out, talking in chaos (acting crazy in lack of a better word). my answer back to her was no, it's not her choice, recovery isnt' in her hands, and that either she let me help her at home, or we would consider inpatient at our local hospital (CHEO) in ottawa. 

My husband said I was wrong in tell her she has to gain weight and that I should not have told her the shakes would be added to give her more calories. perhaps he's right, but my thing was I wasn't going to lie or hide anything. she can't stand the idea of me making it in the kitchen wout watching over me, asking me what goes in, and telling me what not to put in it "I don't want anything material in it" she'll say. I am successful getting her out of the kitchen as I prep it, and after hours, hours of back and forth she gulps it down. We've done this 2x already and it has been soooooo hard (i am soooo drained). Will this get better? yesterday she pleaded with my husband not to take the ready make shakes. My h says we should be telling her that the shakes would make eating less of a stress on her (and should not have mentioned it would add weight or calories), as her anxiety is thru the roof. Which is more correct? I do fault myself in talking to her sometimes like she's on 'my side' and 'will get what we are trying to do to help her'. h says we should make sure she gets heavy breakfast, then send light meal with her to school (he thinks she's tossing the food out anyways or giving some of it away), and then give her a good dinner and shake at night. i made the mistake before 'resetting' of telling her about how the shakes helped the son of a friend of mine gain a pound a week - this was a couple of weeks ago when she seemed sane, collected, and agreeing to gaining the '5 lbs'. now she's pleading with dad not to take it, even tho she asked for it yesterday because she didn't want me to make a 'material smoothie' from scratch at home.

dinner time, made the same food for her as everyone, but plated her separately and added more oil to her pasta/veggies. she cried and cried, asking why her plate was diff, asking if she can change the pasta in her plate with the pasta in the family bowl (that rest of fam was taking from). 'why does my plate need to be diff', I want to plate my own dinner, and it should be from the family bowl' and if i say no (which I did), then she says what's in her plate that's diff. 'look at the pasta, its super oily, you put more oil in it, etc.' 

This morning she asked for oatmeal in a plate rather than a bowl, suggesting that it cools down easier that way. So I did that (I do that for the younger siblings). I gave her a cup of milk (half HWC and half milk, which she doesn't know isn't just plain milk) and asked if she could eat almonds instead. I quickly agreed and gave her about a 1/4 cup of almonds (160cals) and said she could have milk at dinner. She nodded and was happy. Did I just negotiate with ED? now that she's at school I regret agreeing with her. she should have had that milk formula instead. but she had already cried so much, i didn't want her to walk out of the house crying again. was it wrong to do this? did i just negotiate with ED? or is it ok to make these type of concession?

what am i doing wrong? i feel like i'm not doing this right.

Playball40

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Reply with quote  #11 
Hi Hopeful.  Deep breath!

My daughter is 13 and we are over two years in now, so I've been where you are.  Did you negotiate with ED?  Well...yes, you did - but just move on.  We've all stumbled, gotten angry, yelled, conceded etc., in our journeys.  The trick is to just move past it and keep going.  Breakfast is my daughter's easiest meal to eat so I try to pack it as full as I can.  We struggle with lunch as she is in school and even though she eats supervised, she throws away part of her lunch before she gets there so the poor woman didn't know she wasn't eating.  Now we are going to list what's in her lunch box and have her sign off.  FTR, I still cannot get my d to drink shakes/smoothies.  I know they are an easy way to pack in calories and I know that I shouldn't 'concede' this but I've found that she WILL eat Cliff Bars with no issue - I use those as snacks (the full fat/calorie ones, not the kid ones).  For her breakfast, she'll have two packages of oatmeal made with whole milk and a benecalorie added to it.  A yogurt with canola added, fruit cup and milk to drink (with some HWC).  Just some ideas.

Hang in there Hopeful - the eating part will get easier with time. 

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hopeful2017

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Reply with quote  #12 
thanks Caroline. does benecalaroie have a taste to it? I just googled and found the liquid form of it. if i add it to oatmeal, will my d taste it?

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Reply with quote  #13 
hopeful 2017
I just read through the whole thread and I wanted to reach out to you. You are obviously a very passionate mom who is trying your best to help your daughter. Please know that I HAVE been there. My daughter was very ill at 10.5 and we fought HARD for those first 3 plus years to keep her weight up and battle ED behaviors etc. She has now been is a very solid full recovery for 3 plus years (about to turn 17). 

I am going to give you my advice of what not only worked for me, but I have seen work for many many hundreds of people over the years. 

DO NOT TALK NUMBERS WITH YOUR DAUGHTER. DO NOT talk about calories, fats, pounds, goal weights etc. The Eating disorder will only grab onto all of that information and use it as weaponry against you. It just gives her brain one more thing to fixate on and obsess over. That is why your daughter should not have anything to do with the meal plan or with fixing the food or watching you fix the food. Many of us have found that blind weighing works best in the beginning. 

Adding calories through heavy cream, butter, oils etc is your BEST FRIEND. And it is NOT "lying or tricking" your daughter. 
YOU NEED TO WRAP YOUR HEAD AROUND THE FACT THAT FOOD IS HER MEDICINE. I would say to my daughter daily "I will never give you too much or too little. I am giving your body and brain what it needs." 

If her medicine was chemo, would you let her have less because it made her sick and tired and she hated it etc? Would you feel guilty and horrible for making her go to her chemo appointments? You really have got to look at her eating disorder as a disease of her brain, the she cannot control, did not choose, and could kill her. You have got to go to war against the eating disorder. Separate it FROM your daughter. SHE is NOT her eating disorder but right now the eating disorder is consuming her and taking the drivers seat. 

I would very highly recommend that if you are going to keep her in school, you go eat with her at lunch every day, or arrange for her to eat with someone else one on one if possible. If your daughter is not eating her lunch, her brain is not getting the MEDICINE that it needs every few hours (food). And the longer an ED kid goes without food, the harder ED fights back with the next food required. It is very important that she gets on the track of 3 meals, 2 or 3 snacks, all day every day without exception. Routine of it all is important right now. We ate nearly every day at lunch with our daughter for 2.5 school years. We also had an Americore worker who we worked with that could eat with her sometimes one on one. Eating lunch at school was one of the hardest things for my daughter to do- and it took us a very long time to get to that point. Don't let that scare  you though- because every kid is different. 

Your daughter needs to gain weight. A lot of weight. She is five feet 6 inches tall? You said she was 130 pounds and you called that "chunky"? That is NOT overweight what so ever. That would put her at a BMJ of 21. In fact, the vast majority of us have found that our kids need to be at a higher weight than pre-ed to achieve full recovery. Your daughter is 14. Her ED has affected her growth and puberty. She is still a growing and radically changing child who will need to keep gaining weight into her 20s. Once you get her weight gain really started, her caloric needs will go up. The body starts to realize it is getting regular nutrition and will start to use every tiny bit of energy to not only protect organs and add mass to the body, it will use that energy for hormones/puberty. We have ALL had to really do some pretty hard core self- evaluations on our OWN hang ups and issues with weight. You have GOT to let go of this irrational fear that you will make her "fat". You CANNOT LISTEN TO HER EATING DISORDER. It will use HER face and HER whiny voice to try to make YOU feel guilty and horrible and question what you are doing. You cannot let that happen. You have to be a brick wall. "I am sorry this is so hard for you. I know it must be really tough but food is your medicine. Now take a bite. The faster you eat this, the sooner you will be done with this meal." Play games, get a TV in your kitchen and watch 7 seasons of the Walking Dead (or whatever). Sit at the table with her. No pockets, no sweatshirts, no napkins. Watch that all of the food goes in and stays in. Bathroom before she eats and no bathroom for an hour or more after she eats. 

Don't negotiate with her ED. You are in the very early stages. You are doing the best you can right now and I think it is AWESOME that you are here on the forum and that you are seeking advice and taking it all in. This mornings breakfast was ED talking. And do NOT feel bad and beat yourself up- because we ALL had to go through the steep learning curve and we ALL mess up sometimes, but yes- she should have had the milk and oatmeal. Your job is to make the food and hers is to eat it. That "simple". I made a power oatmeal (1 cup heavy cream, 1/2 cup oats and then added butter, brown sugar, raisins etc- easy 1000 plus calorie small footprint breakfast). My daughter bitched and moaned about it....and you know what- yesterday she had the SATS and ASKED me to make her "power oatmeal" for her brain! 

THIS TAKES TIME. A LOOOOONNNNNNGGGGGG TIME. DO not worry about "stages" or any sort of "timeline" right now. You WILL drive yourself insane. Focus on one day at a time, one meal at a time, one bite at a time. The "stages" thing is a "concept". It does not work smoothly and often you go back and forth between the stages many times over as you slowly give back some independence. Right now your daughter NEEDS YOU to fight her ED because she can't. She needs you to put on those big girl pants we all talk about and go get her back. YOU CAN DO THIS. It is the hardest thing we have ever had to do, but it was worth it. Ask lots of questions. Vent away. There are never stupid questions. 

I hope this helps you. Love to you- I am cheering for you! 

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OneToughMomma

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Reply with quote  #14 
Oh bless you, hopeful!  It's so stinking hard and you really are doing your best.  You sound full of conflict and doubt, and we COMPLETELY understand that feeling!

So, sit yourself down and listen to OneToughMomma for a bit.  I'm no doctor; I'm not your d's momma, but I have been there and done that and my d is well and independent now. So maybe some of my advice will work for you.

I'm a little disjointed, so I've put my thoughts in bullet points. [wink]

  • Let's start at the end with your question, 'What am I doing wrong?'  Nothing.  You have done nothing wrong.  We all make mistakes, but any we have made came from good intentions and difficult situations.  You are doing GREAT!  really.
  • Telling your child they have to gain weight is part of manualized FBT.  It's the truth, and they can't understand it when they are ill, but they need to hear it. 
  • Their anxiety, crying, pleading, begging, jumping up and down, even yelling, screaming, breaking things and hitting, those are all 'normal' in this situation.  Horrible, distressing and super-sucky, but normal.  Our FBT even told us that he didn't think ED could be cured without confrontation and anxiety.  It's just part of the nasty process, and yes, it disrupts the entire household.
  • My d could argue and negotiate a coyote from his pelt, and have him walk away thinking he'd won.  Her persistence and quick thinking were as exhausting as her tantrums. We had to play brick wall, and not let her negotiate anything down.
  • Your d has shown herself unable to make choices about food and exercise.  So don't let her make any more until you are confident she is able.  And then take it in VERY small increments.
  • Your husband is right (and you can tell him I said so) about her ditching food at school.  As we saw it, we had two choices.  We could pack food that she might possibly eat or have her meals supervised.  We started with the later and progressed to the former.
  • You've done great to get her out of the kitchen.  I advise you to keep that up.
  • Keep going.  If she begs and pleads for an hour before drinking a shake, remember that she drank the shake.  The most important thing is that she eats.  Her distress will eventually lessen for two reasons. Firstly, because you are tougher than ED and you love her and you WILL NOT give up. So eventually ED will have to back down.  And secondly because with every shake and bite, no matter how hard-won, her brain will heal.  And as it heals she will be thinking clearer.
  • And speaking of thinking clearer, your d is not able to accurately rate her illness.  If she were, she wouldn't be ill.  Any clinician who puts stock in a sick kid's self-assessment is not using current best practice or FBT.  You might consider finding an FBT in your area. My d was sick for almost a decade under the care of sub-par 'professionals'.  An FBT got her WR and on the way to recovery in 'just' 8 months. We drove for 2 hours every weekend to get her there, and it was worth every kilometer. Frankly your psychotherapist sounds like a noob.
  • Coconut oil is a bad idea in smoothies.  Remember it solidifies in cold?  So I highly recommend you switch to canola/rapeseed.  It is flavourless and won't set in cold.  I had a super-sized vat tucked away in my kitchen and had a dainty dispenser on the counter top. You were brilliant to put oil on her pasta, but you could make it a bit less traumatic by dishing everyone's meal into a bowl.  I would line up all the bowls and put the base (grain or pasta) in all but hers.  Using a little bowl I would stir canola through her portion and tidily put it in her bowl.  I would repeat the process for whatever goes on top (stir fry, pasta sauce, curry, etc).  I'd pop the prep bowl in the dishwasher. Her bowl looked exactly like the rest, so much so that I'd struggle to keep straight which was which.
  • She won't eat dressing on her salad?  Cool, no more salads.  Find some new recipes that will work.


You've gotten so much good advice on this thread, and it can be overwhelming.  Pick what makes the most sense to you and start there.  You have good instincts, I can tell.  You'll make it.  Just keep going.

xoOTM



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D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
Torie

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Reply with quote  #15 
Hi hopeful - I'm so sorry for what your family is going through.  Ugh.  This vile illness is the worst.

You've gotten great advice already, and I don't have much to add.  I just want to say that you and your h sound like an AWESOME team!!!  But this vile illness is really, really hard on a marriage so it might be worthwhile to take a few minutes for marriage damage control.  The main thing, I think, is to find a quiet moment to tell him how you feel: terrified, overwhelmed, battered, whatever.  And that you need him as you have never needed him before and appreciate his help.  But you are under tremendous strain right now, and can he please be gentle with you.

The two of you have cornered ED and are in the process of pulverizing it.  Three cheers to you both!!!

Hang in there.  Remember we're with you in spirit. xx

-Torie

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Torie

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Reply with quote  #16 
P.S.  IT DOES GET BETTER!!!  (Really.) xx

-Torie

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Playball40

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Reply with quote  #17 
My daughter has not noticed Benecalorie in anything.  I'm told it is just a touch of sweet, but effectively tasteless.
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iHateED

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Reply with quote  #18 
Hopeful, you have just been given some great advice from some very wise women!  I just want to add to please be kind to yourself and remember the saying we use here is FEEDBACK NOT FAILURE.   There is no 100% right way to do this because every family is different.  Every day is a battle to take what's working and what's not working and try again! 

A few things we finally got going after several months of exactly what you did- and believe me I did everything you mentioned in the early stages--

No school until breakfast is completely eaten.  ALL OF IT.   Milk too.  It's OK if your D is late to school.  My D was a junior in high school (age 16) and we let the school know so that she could be on a plan that allowed her to show up late and leave for lunch (called a 504 plan in the US). 

Hard as it was for both of us, my D would come out to my car for lunch and she would eat her lunch in my car.  At first I would drive around the block but soon found lots of hidden food under the seat and in the side compartment!  So FEEDBACK NOT FAILURE, I changed the routine to my driving to an empty parking lot, turning off the car and giving her lunch with me able to watch her eat with my undivided attention! 

Hang in there! 
hopeful2017

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Reply with quote  #19 
You ladies are just amazing. Sending love to each one of you for your support and words of wisdom. It is so very helpful.

Torie, you read btwn my lines. H and I had a 'loud stint' for a few mins yesterday w/one another; we both realized ED was getting to us. I just told h yesterday I couldn't do this without him. We have one goal; heal our d. We do need to talk out strategy and roles so we are consistent (as any parenting plan should be).

OneToughMama, on our psychotherapist comment; I've been feeling the same (she was helpful at first, but I do feel our sessions with her aren't getting us far). Esp re weight gain; I had asked repeatedly if weight gain needed to happen, and how much, and she left that to the fam dr to answer (which if you read my other threads, fam dr was totally uneducated in ED and not on board, and said current weight is fine since it was w/in the 'normal range' and basically eluded I was blowing things out of proportion). So struggle for 6 wks w/out much gain - tho I'll have to admit just getting on a food plan that constituted meals has given d some energy and bounce, as small as that was, it's a bit of hope that if we continue, we will see more. 

How do I find a FBT in my area? I found a "ED friendly" pediatrician, but not seeing him until May. I might call local children's hospital for some leads, but if you have experience on how to find one, pls do let me know. 

thank you all once more.
with love

Torie

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Reply with quote  #20 
Honestly, it sounds like you and your h are such a formidable team that you may not need FBT.   What you do need, though, is to lose any "help" that is actually unhelpful.   (We. like so many others here, started out with "help" that was worse than no help at all.)

I don't want to discourage you from FBT if you are able to find someone good.  But perhaps an alternative might be to Skype with someone, for example Therese Waterhaus (sp?), who is a highly regarded dietitian who treats ED.

Just a thought. 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 
Quote:
Originally Posted by hopeful2017
This morning she asked for oatmeal in a plate rather than a bowl, suggesting that it cools down easier that way.


That is probably OK - the right kind of choice for your d to be making right now.  The red bowl or the blue bowl - OK. This glass or that glass - OK.  

She should have a caloric beverage (preferably milk) with each meal.  

Eventually you will need to have a Come to Jesus meeting about that "5 to 7 pound" estimate.  I made a similar mistake, as did many, many others here.  In the end, I just had to fess up and tell my d, "I'm so sorry.  I made a mistake."  Saying it was a miserable conversation doesn't scratch the surface of reality.  But we got through, and so will you and your d.  She will doubtless press you for a new estimate.  Pretty much everyone here will give you the good advice to refuse to give her a number, which is what they advised me.  In the end, I couldn't keep it up because it was absolutely driving her crazy: "How do I know you're not going to make me keep gaining until I weigh TWO HUNDRED POUNDS?????" etc.  (She was also driven so crazy by blind weighing that we switched to open weighing, which was much better for her.  Your mileage may vary.)  So I eventually told her a number, told her I HOPED that would be enough, but that the only way to know for sure was to get to that weight and see if she was feeling more normal.  ("Normal" is such a great word.  They all want to be "normal" even at a time that their ill brains twist "healthy" into meaning "fat.")  And then take a deep breath and tell her the rest of the sentence: and then you will need to gain a little more each year through your teen and young adult years because that's what's normal.  You will need to tell her this over and over as time goes on.

I would urge you do not ever ever ever say a number to your d that is less than her highest previous weight.  I can't think of anyone here who hasn't needed to restore every previous pound (at least).  And don't promise "not to make her fat."  In fact, don't ever use that word.

OK, that's enough random comments for one post. 

Keep swimming.  xx

-Torie

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byebyeED

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Reply with quote  #22 
http://maudsleyparents.org/providerlist.html

There is a list of providers at this site, although I'm not sure how up to date the list is.  Our provider is on the list, but it says she is pursuing the supervision to become a certified FBT, and she has been certified for quite some time.  That's why I'm not sure how up to date the list is.  We live four hours away from our FBT, but she does offer Skype sessions and we only see her in person about once a month.  For us, it's worth every single mile that we travel to see her.  She's so good and has helped us so much!
aboncosk

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Reply with quote  #23 
I think finding a therapist who is on board with FBT is key.  We live in a major metropolitan area (Chicago) and there are two listed on the Maudsley website.  So, to say they are few and far between is probably a safe assumption.

I did find the name of a therapist who does telemedicine, Rhonda Overberger (she was listed here on the forum by one of the veteran posters).  I recently contacted her because we were trying to work out the logistics with the two therapists here in Chicago (almost two hours for us with traffic).  Rhonda is more of a parental coach vs conducting sessions with the child and parents (and perhaps siblings too).  However, what I've learned recently from our University of California San Diego Intensive Family Treatment program was - parents NEED to be on the same page.  Let me tell you my husband and I were on OPPOSITE ends of the spectrum when it came to ideas on how to best treat our daughter.  Having him sit through a week's worth of intensive therapy (they teach FBT/Maudsley) helped him not only understand what she goes through on a daily basis but helped us both learn about the neurobiology of this illness.  Our daughter is still seeing an individual therapist but more from the perspective of how to deal with anxiety and what tools she can learn to help her cope with it. Ultimately, we ended up going with Chicago Center for Evidence Based Treatment (CCEBT).  They do offer telemedicine as well but there have limitations as to who they can treat outside of Illinois due to licensing - something you may have to ask if you can find someone who can assist with a telemedicine option.  For us, telemedicine helps keep our lives somewhat "normal".  It's not a six hour trip to drive to the city, meet the therapist and drive home.  Not to mention taking time off of work and pulling our daughter from school. 

One other important thing we learned at UCSD was that weight restoration is CRUCIAL for the brain to heal and to aim for 1-2 pounds of gain per week.  Physical restoration has to take place first and then the mental aspects of the illness can be addressed.  It sounds like you are doing the right things.  This is such a different approach from meal plans, etc.  Really simple when you boil it down - feed your child what you think they need.  I struggled with that our first week home after UCSD but it was SO helpful to start returning food items to her plate that she had cut out over the past year.  Thankfully, she is a compliant child. She completes her meals/snacks and doesn't argue.  I'm sure she pays for it after the fact but we've been told that the more weight they gain - the less the disordered thoughts come into play. 

Keep doing what you're doing and trust your gut.  If it's bad treatment - get rid of them.  Find someone who will support you as parental involvement in this illness is paramount to recovery.  We all have our days but know that you have support by many on this forum.

Blessings to you and your family.



OneToughMomma

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Reply with quote  #24 
Dear hopeful,

This was before I found ATDT, and I googled and found a 'list' of FBT's near us (2 in our metropolitan area). I phoned them and we took her to the one who would accept her.

No help is better than bad help, but if you can find a registered FBT they are usually great.

xoOTM

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D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
AUSSIEedfamily

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Reply with quote  #25 
Dear hopeful,

I hope your H is getting on board with being a team with you and getting to understand that food is the medicine your D needs and will keep needing for quite a while in order for her brain to heal and in lots of cases a weight above what the clinicians set as WR.

If your H needs any help with that get him to read all the dad/husband posts here.

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