F.E.A.S.T's Around The Dinner Table forum

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hopefulyetscared
So we are 15 months into this journey that no one wants to take, but yet here we are.

It took about 4 months to get my D to a healthy weight and she was able to maintain and grow all last year while remaining active both physically and socially (once at healthy weight). Over the summer she had too much "freedom" and lost a few pounds and we quickly jumped in and placed more controls and she is "back on track" now.

"Back on track" means she drinks a shake I make every morning. Is unsupervised at school for snack and lunch. (Lunch I pack or once a week she buys at school.) She eats a snack of her choosing after school and before bed (tries to vary but tends to fall back on something "safe".) Eats whatever I make for dinner with the family.

We are able to maintain her physical health without to much trouble. She knows what she needs to eat to stay healthy. She eats a variety of lunches & dinners and is able to eat at restaurants appropriately. But when pushed or challenged ED gets very loud so I don't push. 

How is her brain going to heal? She sees a therapist biweekly, which doesn't hurt but I can't say is helping. It seems they do a lot of talking but I'm not getting that her thoughts are being challenged. With me she doesn't ever want to talk about ED. It's like the elephant in the room that we tiptoe around.

I feel like we can live in this "limbo" forever. Keep her physically healthy but the minute she is on her own for to long it will all end. Her brain needs to heal and I don't know how to help move this along???

I am in awe of those of you that have made it further along on this journey. I would be grateful for any advice.

Thanks!


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atdt31_US
Great job on getting where you are -- how old is your daughter?

Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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hopefulyetscared
She's 13 now. Diagnosed few months after turning 12.

Probably started restricting when she was 11. Never overweight. She's always been athletic. "Fell" into this starting out be trying to eat what she thought was healthy. (Bad info received during nutrition class at school and from soccer coach.) Soon after the exercise compulsion followed.
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Psycho_Mom
"But when pushed or challenged ED gets very loud so I don't push."

Push.

Not hard enough to backfire, but hard enough so that she takes tiny steps forward. This is a time of slow and steady pressure forwards.
Your d sounds a lot like mine 15 months in. We made a list of all the foods she found challenging. It was a really long list. I asked her to rate the foods on a scale of 1-10, 1 being not very challenging at all and 10 being screaming terror. I said she was having one of the foods on the list every day, and which would she like today? (That was too hard a choice; we ended up that I'd give her a choice of two foods.) Every month or so I'd ask her to re-rate the challenge level of the foods.  
It took about a year of daily challenges before we didn't need them any more. 

It's called laddered exposure therapy, and it can also be done for challenging situations. Like, if your d is scared of eating in restaurants, you could start by just bringing a menu home and making her look at it and pretend to choose something. Next, you could walk in to the restaurant with d and then walk out again (I did this a lot with my d; at first she'd nearly have a panic attack just walking up to a restaurant.)

Etc, figure out tiny steps you can take to help your d move forward. Emphasize to d the goal, which she will probably share: ie "wouldn't it be nice to be able to go to a restaurant with your friends?" 

best wshes,



D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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EDAction
Hi Hopefulyetscared,

So is the problem that she won't eat enough if she is unsupervised?  What did the "too much freedom" look like in the summer?

Would you give some examples of what you mean by pushing and challenging ED?  And what are the reactions you get?

And would you explain what you mean when you say that you don't think her thoughts are being challenged in therapy?

Just trying to get a better handle on your situation . . . [smile]
DD diagnosed with anorexia at 14; FBT at home with the help of psychologist and medical dr; 3+ years later and doing well (knock on wood)
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mamabear
You need to understand and accept that this takes a very very long time. Your daughter is in the highest period of growth and change after infancy. There are massive hormonal changes happening and shifts in body composition. She is growing. She will need to eat for growth for a long time.

The only way out of this is through. You have to push through the hard stuff. The only way to get rid of Ed is to relentlessly show it that it WILL NOT get what it wants.

Your daughter is young. She needs YOU to push the Ed. I fed through the same period of time. It took 3 years from diagnosis to get back to independent eating.

Here's a story: For months my daughter only wanted strawberry shakes. She had a large shake daily for 2.5 years. I would ask her if she wanted chocolate ( her previous fav) and she woukd say no. Well one day I made chocolate... And Ed freaked the hell out . Of course.... Because strawberry was at least a " fruit". BUT months later my d told me she was happy and RELIEVED when I made her have that chocolate shake. SHE wanted it but it would not let her have it. I learned her eds language. The more she talked about certain things, the more I knew those were the things we had to tackle.

15 months feels like forever, I know. But your D needs you to be stronger than the Ed. More persistent and consistent than the Ed. You cannot fear her Ed. Learn and accept that pushing WILL fire up the beast. Hold strong and do what needs to be done.
Persistent, consistent vigilance!
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Torie
hopefulyetscared wrote:
How is her brain going to heal? She sees a therapist biweekly, which doesn't hurt but I can't say is helping. It seems they do a lot of talking but I'm not getting that her thoughts are being challenged. With me she doesn't ever want to talk about ED. It's like the elephant in the room that we tiptoe around.


We had a similar experience with the t. In retrospect, I don't regret it, but I don't think it helped either. The t wasn't going to fix my d's brain because talking isn't what helps. Talking wasn't my d's medicine - food was. 

Consistent, full nutrition plus time is what she needed. Stamping out all vestiges of ED behavior. Requiring her to behave exactly as she would have behaved without AN (eating all the same foods she used to eat, no compensatory behaviors).

Eventually you will need to have some conversations with your d to help her understand that it will NEVER be safe or OK for her to diet, why she needs to be sure to avoid missing even a single meal, etc. Luckily, time is on your side on this as she will be home with you a few more years.

You're doing great. Keep going. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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mdmama
Hopefulyetscared, our stories are eerily similar. My girl was also diagnosed (last fall) at 12, also had an exercise compulsion that was rooted in her soccer playing, and also regained weight quickly but has some lingering ED behaviors. She seemed much better through most of this summer but in the past week or two has started to exhibit more ED actions (saying a normal size serving of food is "too much", wanting to go running frequently and with a stopwatch to time herself, complaining of a mysterious stomachache around mealtimes). She eats almost everything I give her without any complaint. She voluntarily helps herself to a cookie if I've just baked some, or a handful of french fries off my plate at a restaurant. She ate lunch unsupervised at school last spring. (She starts school again next Tuesday.)

We "took a break" from therapy over the summer and our previous therapist moved to a different type of practice. We had thought we might not need to restart it, but now I think we should, even though I dread the getting-up-to-speed it will take to get to know a new therapist and have my D trust him or her. 

I appreciate the wise words of everyone who has replied to this thread and will eagerly look for more responses. 

_______
D diagnosed with AN November 2015 , the week she turned 12. Gaining slowly but steadily, fingers crossed...
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hopefulyetscared
Thanks for all your responses. Appreciate reading your experiences and learning from you and also sharing my story so that others know you are not alone. 

Psycho_Mom I really like the idea of the laddered exposure therapy, but here's a questions. My D won't make a list and her most common response when I say she is "restricting" a food she says she doesn't like it. And she will go further and says she never liked it or even say she never ate it, when clearly this is not true. How can I make her challenge herself with fear foods? (Especially when she says she eats enough, which she may be, but ED lingers.)

Thanks!
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Foodsupport_AUS
Laddering is a great idea, but it is not uncommon to get this kind of back talk from ED. My D had no "fear foods" but she sure had a restricted intake. Mostly it was about energy levels, especially low fat, rather than the type of foods. To increase the variety of foods I generally worked very slowly with her to look at introducing new things (some of which were old) and trying new recipes that had new/old things in them. After all it is not "normal" to be unable to eat outside a restricted group of foods. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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Sammie
Hi- Regarding fear foods, if your D won't make a list, can you think of any foods that she used to enjoy but that she has cut out? For us, everything that my D like pre-ED was fair game to include in her list of fear foods. Even though she claimed not to "like" ice cream, chips and candy anymore , we tackled them as fear foods (i.e. Included them in her diet). Turns out she does still like them... It was just the ED saying she didn't. Or think about what typical kids do. They will go out for ice cream, drink a fancy coffee drink, eat popcorn at the movies, share an order of fries at the mall, grab a muffin at a coffee shop, choose a cookie at a bakery, eat out at a restaurant, select food from a bulk food store, eat a chocolate bar, etc. I gradually re-introduced these kinds of foods and activities to my D over time during refeeding. Although some of these activities can be terrifying initially, they become easier with repeated exposure. Work in baby steps, if necessary. For my D, my goal was to ensure that no food or situation had power over her anymore. I did not want my D to avoid a lot of situations and places that involved food -- it reinforced the ED and it can become socially isolating. I made a list of foods and scenarios (i.e. going to a coffee shop) and we picked one to do weekly. Start with something you know won't be too overwhelming (i.e. Set her up for success) and build from there. Normalized eating includes trying new foods and not being fearful. Good luck!
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hopefulyetscared
Thanks for your "tackling" fear foods/restricted foods suggestions. For my D it is all about the fat. I don't talk numbers with her, i.e. calories, fat grams, but she knows and does look. So we have this unspoken dynamic, I want her to eat more fat but at the same time I try not to talk numbers. 

I like the idea of including these in her diet, but I'm not sure how to make them part of her diet. How often does a particular food need to be included in her diet to overcome the fear? For example, I can insist that she eats chips with lunch today and she will (reluctantly). Is having it again next week enough? Or tomorrow? One new food a week? a day? 

Thanks again!
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Psycho_Mom
Hi,

yeah, I'd avoid the word "fat"  even tho what you mean is "dietary fat" which is not at all the same thing!!! The scientific term is "lipid" and this is an excellent term to use instead, if you ever have to speak of it at all. Which I'd try not to. It helped my d to emphasize "normal". Is it normal behavior to have a couple pieces of pizza and a salad for dinner? Yes it is. Therefore that's what she needed to be able to eat. Say she needs to eat pizza because it's a normal thing to eat, not because she needs the lipids (altho that is true of course, too.)

A challenge food needs to be included in her diet until she can eat a normal amount, at a normal frequency, in a normal manner. (Ie she may still feel some fear; you can't make requirements about how she feels, but you can about how she behaves. Important distinction for a teen esp, who doesn't want to be told how to feel!!) It's good to not go too long before serving a feared food again, otherwise it's kinda like starting all over again. And some people say three times and then it's not a fear food anymore. For my d, it depended on the food. IT took about twenty times of serving pizza before she'd eat it without making some sort of fuss. The fussing got more minimal each time, however. And some foods only took once. 

Regarding the list. The main point of it was so that my d could have some input into the choice of challenge food, and so that, over time as she rated and rerated the difficulty of foods, she'd see that they got easier. BUT of course she didn't want to put foods on the list, because she knew those would be the foods I'd serve--putting foods on the list would be like ASKING to eat those foods. Which there was no way she was going to do. What I did, I think, to make the list, was suggest foods and then ask her to rate them. Varying the difficulty. So for example I'd say, "OK, peaches." and she'd say "3." And I'd say, "pizza" and she'd say "wtf I will not eat pizza no way #$@!!!!!!" and I'd say "10, then?" 

If a list seems like more trouble than it's worth, ask your d if she'd rather scrap it. (I always tried to give my d as much input into things as she could handle. For her, this cut down on the rages. For others, the stress of decision making might add to anxiety. Just go with whatever works best for your d.) The main thing about challenge foods is that they get done. Because seriously, my d is back to eating everything now that she ate pre-illness, but the few things I forgot to put on the list, took her FOREVER, I mean way way way past all the other foods, to eat on her own. 

best wishes,
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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