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seekingsunshine

Since I seem to come up with questions just about every day, I decided to compile them. If anyone wants to address (any) of them, great!

1) Is it okay to feed while ED "thinks" it is being appeased?
Here's what I mean by that. D(ED) prefers Pam spray instead of butter to cook pancakes. Today I used Pam, but also put some melted butter in pancakes.She didnt watch meal prep at all. Left Pam out on counter. Is this being sneaky with ED in a bad way, or just appeasing it so she will keep up the proper intake of calories? If she prefers fish over steak in general, is it wrong to offer fish (smothered in something high calorie)... Or she wants a chai latte with reduced fat milk and I throw in HWC?
2.) Sleeping more when growing more?
Recently I've seen her crankier, sleeping more, and more confrontational. Does this sound like growing or just ED behavior? See next question...
3.) I am so confused about mood swings- spewing anger, not logical. Two hours later takes snack without issue and pleasant again.
This one just befuddles me. I guess like in Brave Girl Eating there is a voice and look that appears when she is feeling anxious about losing her ED. (which by the way she refuses to admit she has) She went into a long rant (I should've walked away-why was I even trying to be logical?) left table in tears. Before bed took her 500cal chai latter without so much as a peep. 
4.) Better to plan with D or better to just have her EAT in phase 2?
Ugh, this one is HARD. We are supposed to be helping her to learn proper eating. However, one meal will be satisfactory, but the next day or meal suddenly back to a tiny portion or insufficient snack. She hasn't lost any weight, only gained and grew in past several months. If we gave her even 2 inches of wiggle room I fear she would be back in underweightsville.
5.) When you "bump up calories" during growth spurt, does D/ED know this?
This one I am curious about. My D is almost 14, never started her period, so we have at least another year or two of growing ahead. When she has a spurt, should I tell her we need to up intake? Or just do it on the sly. I want success in the feeding, but fear that once she begins independent eating she will have NO CLUE how many calories are really needed since I hide so many with HWC,Canola,etc...
6.) Does this make sense: When given more independence/self feeding, seems first happy and grateful, then increase in the anger/ED behaviors.
Sort of piggybacking question 4
7.) Me-weight gain, meds, therapy and plate cleaning myself!
This is more of a comment than question. I find that after meal prep, I eat leftovers even though I do not need those extra calories!! It has become a habit since we started our family weight gain (ie. refeeding D) ha The wellbutrin I am on seems to be helping me not wallow in sadness as much. Also see a therapist weekly who counsels me in the area of parenting an ED child, along with helping me with my own food/body issues.
8.) Is eyeballing okay until next WI? When to weigh at home?
D goes to an ED specialist at a childrens hospital about monthly or so for her weight/height/body check ups. There are sometimes 6 weeks between visits. So far no losses in weight, but I am wondering if we should start home weighs? She does not know her weight since the initial WR, and I don't want this to be another anxiety for her. Just curious of your thoughts. Thanks so much!!

Seekingsunshine, found many rays of hope in the last year of treatment. D 14yr old- restricted since about age 9-10, dx at 13 when I felt she wasn't growing, FBT/maudsley summer 2015, WR Sept 2015, but have to keep chasing moving target. Not ready for eating independence.
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Winnipuh
Hello there!

I cannot add anything to all of your questions, but to 2/3: your d is starting puberty! Dont forget this...funny times are waiting for you.....additional to ED, tho.

But you will manage it. You will.

I dont say anything is hormone related, but mood swings, being sleepy/tired, arguing about all and nothing is quite normal behaviour in a time when actually nothing is normal (esp to your d)

1) a lot of parents on atdt do so.
4) maybe you could have her involved in mealplaning (the what not the how), but still fill her plate? Give her more choses for snacks, but make sure, they all are enough each one?
5) Personally i try to be as honest/open with my d as i can. She is my/our co-captain in this, she has to know the way we are heading for bc one day she has to take over control of her lifeship. And it really helps to safe the relationship between us. ED does not trust me, my d does.
6) I guess this is part of the way. For easter e g we went to a restaurant and i told d before i would not comment on what she would order even if it would be a side salad. I told her, i knew she could do it and that she is ready for it. First she was all happy and self confident. But when we were going to the restaurant she all at once said she does not want to eat out, she would stay home alone and have lunch by herself. When i told her oc she wouldnt she first was all about arguing, but then took her things and we finally got there. I think, part of her loves the freedom and part is afraid of it. Btw she ordered pasta AND a side salat and finished both.
7) is this a problem for you?
8) Just curios: how do you know she never weighs herself anywhere? We did and do blind weighing after ip at home AND the gp weighted her 1 a week,then every 2 weeks, now only once a month. I weigh her every week, if she has lost, i will weigh her every two days until shes back on track. She never wants to know about her actually weight bc she says it makes ED worse. She knows the BMI she is around, tho.

Haha now i did every q!!
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cnkinnh
I'm not sure how much information I can offer, I just wanted to comment on how many similarities I see between our daughters - close in age and it seems we are on almost exactly the same schedule. My D is 13, almost 14, has not started periods yet. Her illness became apparent last summer, during which she was hospitalized for 2 weeks, she was WR (more or less) in September, we're continuing to chase growth, and we're in phase 2 of treatment with D nowhere near ready for independence.

I can at least take a stab at answering your first question, and I think the answer is "it depends." I see two goals here: 1) weight gain, but also 2) confront fear foods and have D take responsibility for her own health and all that entails. So whether you're totally up front with her will depend on what your goal is, and I think it's perfectly OK and might be totally necessary to go after #1 first. And even when you do tackle #2, it will be a long, gradual process.

Looks like you've done some reading so I'm guessing you know that you shouldn't lie to her. But if it works to put melted butter in the pancake batter when she's not watching - if that saves her some stress & anxiety while she's *gradually* learning to take responsibility in other ways, that makes sense to me.

I'm so impressed with your success with weight gain - looks like she's been able to gain and maintain pretty steadily. But maybe that's also because she's being weighed so seldom so you're not seeing the small fluctuations. We are checking my D at home, and more often. My H tends to weigh her a bit more often than I'd like, and he worries about small losses, sometimes more than I think is warranted, which can be a point of contention between us. I probably wouldn't be comfortable with weighing her less often than once a week. If you do decide to weigh at home, you could have her turn her back so she doesn't see it. Our D does know her weight, but that's never been a fear for her. That's something that really depends on the patient.

Keep up the good work!
15yo D, first diagnosed 2015 with RAN. Diagnosis changed several times along the way, they are currently saying lifelong mild ARFID, complicated by major depression and AN starting age 13. Everything is atypical with her. FBT less and less effective after 2+ years. 
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Torie
I think a lot depends on what you'd be doing, had your d not encountered Ed. Your d is very young - in the Torie household, it isn't normal to talk about ingredients / amounts / anything weight or calorie related especially at such a young age. I cook, I plate, you eat is how we always did it with non-Ed sibs. So that's pretty much what I aim for with Ed-d. As she has gained more independence, it's along the lines of ... Me: That's not enough. Add another handful of chips or something. Or, "that's not enough, but that's ok because we'll have dessert later."

When we went to one of those Japanese restaurants where they cook the food in front of you, I noticed that the chef added A LOT of butter to the fried rice. So it's very normal to add various amounts of butter and canola to things when cooking. When we make homemade ice cream, we use heavy whipping cream and sugar - maybe not any other ingredients, can't remember. So that's normal, too. What's not normal is to freak out about it - discussing/negotiating with Ed isn't a winning strategy so I have always just tried to avoid that. I prepare, I plate, you eat. End of. If there's anything about that you'd like to discuss/argue/negotiate, well, I don't negotiate with terrorists.

You have a lot of time yet with your d under your watchful eye. It will get much easier (for both of you). A lot of the problems melt away with time wr and the rest you can address later.

Keep up the good work! xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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seekingsunshine
Thank you so much winniepuh,CK,Torie and mousy-- lots of great feedback. Torie, you'd have been proud of me. She had a basketball game tonight, and I was making a super big high cal shake for her. I saw the panic in her eyes and she said "that isn't for ME is it?" And she begged for a substitution. I said, well, how about nuts and dried fruit? She said she didn't want that either. That's when I saw it was not w matter of taste but rather an ED thing. Topic closed! "You drink the shake or no basketball" and she huffed "I wasn't going to NOT drink the shake!! Sheesh! Don't be so dramatic!!"
(If that isn't the pot calling the kettle black!!) I am also proud of her for eating a big noodley dinner at 10pm since she only got one tiny piece of pizza at a party she went to. Proud of her for telling me that, and proud that she ate the noodle bowl.

I think I said earlier that both she and I are (separately) getting counseling. So eye opening!! The fact that stands out which I know may be obvious, is that it IS NEVER ACTUALLY ABOUT THE FOOD. it is always about something they are anxious about. It helps me to not try to reason with her. Would you tell someone in a high ledge who was terrified of heights "I think this chocolate milkshake will help you feel better. Or would you like strawberry?" And would that person even care about drinking anything at that moment?? But that shake may just be what keeps them from going crazy up on that ledge!

I digress.

Please remind me when I am in a deep abyss that is GETS BETTER....tonight was good, but tomorrow may be different. Need to learn to roll with the changes.
Still not sure what to do about the weighing. She looks so healthy, and Mousy, you said something that rang a BIG bell in my mind "she isn't cold anymore"... A year ago, for all of 7th grade, no matter what she was wearing she was cold. Now she will head out in a snowstorm wanting to skip the jacket!
Seekingsunshine, found many rays of hope in the last year of treatment. D 14yr old- restricted since about age 9-10, dx at 13 when I felt she wasn't growing, FBT/maudsley summer 2015, WR Sept 2015, but have to keep chasing moving target. Not ready for eating independence.
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Torie
Yay! Great job with the shake! And the noodly dinner!

I have to say, though, that I wonder about the basketball. I can't remember if we've already discussed this, but many here have found it much harder to get wr with sport in the picture and hence banned sport until adequate weight. (My d wasn't an athlete to start with so we didn't have to wrestle with that dilemma.)

I suppose they are all different, but with my d, it absolutely WAS about the food. As was said on another thread, eating a piece of toast (or whatever) was as terrifying as eating live tarantulas. It's so weird how their brain wiring gets scrambled.

Keep up the good work. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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seekingsunshine
Torie wrote:
Yay! Great job with the shake! And the noodly dinner!

I have to say, though, that I wonder about the basketball. I can't remember if we've already discussed this, but many here have found it much harder to get wr with sport in the picture and hence banned sport until adequate weight. (My d wasn't an athlete to start with so we didn't have to wrestle with that dilemma.)

I suppose they are all different, but with my d, it absolutely WAS about the food. As was said on another thread, eating a piece of toast (or whatever) was as terrifying as eating live tarantulas. It's so weird how their brain wiring gets scrambled.

Keep up the good work. xx

-Torie


Yes,basketball has both been discussed here and is probably a bit of a contributor to slower gain. She practices one night and has one game a week. I do wrestle with it, but she seems to enjoy it on a social level too ( it's a group of girls who will all enter the same high school together next yr). The true test will be how much she is willing to eat when high school basketball kicks in. For now it is helping her see what needs to be eaten to compensate for exercise.

Running was a big red flag for her. I say "was" because she now has said many times " I hate running!" And never asks to go... What a joy to hear her say that!

One thing that frightens me about EDs is that they can kick in with so many situations and suddenly take hold. A stomach bug, a bit of loss from eating less due to stress, a comment from someone that reinforces ED ( you look so thin! I am jealous...) like you said, the brain wiring gets SO mixed up. Thanks again for your feedback.
Seekingsunshine, found many rays of hope in the last year of treatment. D 14yr old- restricted since about age 9-10, dx at 13 when I felt she wasn't growing, FBT/maudsley summer 2015, WR Sept 2015, but have to keep chasing moving target. Not ready for eating independence.
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ed_newbie
Seekingsunshine, I can relate to so many of your questions. I get so frustrated with the pushback that seems to pop up so randomly and the questioning of ingredients and portion sizes. It can be so exhausting. We are chasing growth (no period yet) and wrangling with hormones and teen independence. I'll do anything it takes including the don't ask/don't tell approach to meal prep to make sure she gets the fats her brain needs.

"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

15 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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OneToughMomma
Dear seekingsunshine,

I will relate an experience to you that might answer your numbers 1, 4 and 5.  From what I am hearing, those questions are about transparency with d about what you are feeding her.

With my d we could not tell her what was in her food, either calorie-wise or ingredients.  Had she known she would never have eaten it, and she would run away (did that several times).  So we had to feed her on the sly.  She knew that the goal was to gain weight, just not the details of how we were accomplishing it.  She could not be in the kitchen, and being around groceries was hugely stressful for her.  So we avoided all talk of meal planning, etc.

I did worry that she would have an unrealistic vision of how much she needed to eat because her food was boosted as much as possible.  Ultimately she began to care less and less about the ingredients, and we just gradually dropped the heavily-supplemented items as she got to WR. 

Around her 18th birthday she was 6 months from leaving home (if well), WR, legally an adult, and discharged from FBT.  She said, 'I'm good. You can't tell me what to eat.'  And she was right.  A busy, independent, healthy 18 year old should be able to feed herself.  At that point we let her make her choices.  And we watched as she slowly lost weight and became disordered again.  She was shocked when she realized how much she had lost and tried to put it back on herself, knowing she couldn't leave home unwell or underweight.  After several weigh ins with no gain she had her epiphany. 

She said, 'I didn't know how much I needed to eat.'  Honestly I think that had less to do with how we fed her and more to do with the ED itself.  It's just something ED brains don't do well.  So she asked for help and we did it.  We taught her how much to eat and how to plan meals and how to shop and how to cook.  And she left for college and she is doing well. 

H and I think that is the blip she had to have.  If we had propped her up until she left then she would have dropped that weight at college on the other side of the country. 

I have zero regrets about hiding nutrition to get it into my starving girl.  Our relationship was horrible when she was unwell, but now we are so close again.  She is constantly texting and phoning me.  I feel like I'm practically earning that degree myself!

I suppose my point is that our kids need food and their anxiety makes it hard for them to know the calorific value of what we are giving them. 

Your d is only 13.  And generally, I think a healthy 14 year old doesn't care what's in food as long as it tastes good.  She has very little say in what happens in the kitchen.  I think that's normal.

You are doing great!  Noodley dinners are wonderful.  Shakes before practice are good.

xoOTM


D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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seekingsunshine
Mousy, thanks again for this feedback.

OTM, Wow! You described the exact scenario that I am fearful of. You nailed it. And to hear that she needed that epiphany (having been the one responsible for the loss), well that is a hopeful story. And I am thrilled that you and D are close again. Double yay!!

From what I am noticing, silent calorie increase is way smoother sailing for D gaining than me explaining patiently "sweetie, no you cannot have that chicken noodle soup and glass of milk only, you need about 500 more calories"--- she would probably go running out the door. (Kidding, but seriously I don't think she understands)

At one point after her weight was out of danger, per the ED Doctor she sees, we took her a dietician at the hospital she gets checked monthly. It was laid out clear as day- 3 hearty balanced meals, 3 solid snacks, and XTRA WHEN PLAYING BASKETBALL... No room for error, right? Wrong! Her smart ED voice finds ways to dispute any extra calories she doesn't want. (But I just had ____, but I am full, but I don't need that"
Hence I am back to just preparing, plating, and asking her to please finish. We don't force the 100% clean plate, but now that we see her actually reaching for 2nds on things like potatoes or milk, we feel more okay with the less than perfect plate cleaning.

While I am so very scared she will fall back once we give independence, or, when high school basketball workouts kick in, my therapist (also an ED trained) said that for some children, it takes a really low point before they have the epiphany you were talking about,

I am so glad for your success and appreciate the encouragement.
Seekingsunshine, found many rays of hope in the last year of treatment. D 14yr old- restricted since about age 9-10, dx at 13 when I felt she wasn't growing, FBT/maudsley summer 2015, WR Sept 2015, but have to keep chasing moving target. Not ready for eating independence.
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OneToughMomma
Seekingsunshine,

Glad our experiences resonated with you!

I would just like to clarify.  I often heard people saying that my d had to hit rock bottom before she could get better, and I just didn't buy it. 

For one thing, she had already gotten close to killing herself with her ED's nutritional and exercise choices.  Pretty close to the bottom, in my opinion, and she didn't show any new insight at that point.

And secondly, when ED kids get to rock bottom, they really do lose the ability to think straight.  The lower they get the harder it is for them to get better.

We had done our job, feeding her and supporting her for years.  We could see that she was in a good place and WR.  She was chronologically mature, and in relatively good emotional health.  18.  And she wanted to go away for college.  So it was the right time for her. 

We were not going to let her go too far, and were ready to step in if things got out of hand.  But I do think that our d needed that learning experience.  We are so grateful and relieved that it worked out as well as it has so far. (she only left home in February, so it's still early days)

Your d is still a child, and I would be very concerned about any clinician telling you to let her hit bottom any time soon.

In my last paragraph in the post above, I accidentally edited out a reference to my healthy 14 year old girl.  She is motivated almost purely by the taste and convenience of foods.  She likes packets she can carry around and eat without having to let go of her ipad.  She likes salty, sweet, crunchy foods.  She doesn't really care how I've prepared a dish or how many calories are in it as long as it is appealing.  She doesn't want to watch me prepare or plate food.  I think, despite all of the food-related trauma in the Tough house over the years, that she is an average kid in this respect.  So that is what I would aim for in any ED kid.  To get them back to not caring much about food. 


A big hug to you,

xoOTM


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

Glad our experiences resonated with you!

I would just like to clarify.  I often heard people saying that my d had to hit rock bottom before she could get better, and I just didn't buy it. 

For one thing, she had already gotten close to killing herself with her ED's nutritional and exercise choices.  Pretty close to the bottom, in my opinion, and she didn't show any new insight at that point.

And secondly, when ED kids get to rock bottom, they really do lose the ability to think straight.  The lower they get the harder it is for them to get better.
Your d is still a child, and I would be very concerned about any clinician telling you to let her hit bottom any time soon. 


A big hug to you,

xoOTM




OTM, I agree with your post. And need to explain what the counselor said, because I think it came out wrong. She was not suggesting we let D be independent and fall to a dangerous weight. Her comment was that "some people recover only after they hit rock bottom." Not that we should let them intentionally. It was more of an insight that everyone is different-some heal faster, some have more backslides.

And H at one time suggested maybe we let her make choices for a month and then have the evidence that she still needs guidance and help. But I said absolutely not. She is still growing. To go down in weight and lose the higher caloric intake could put her in a far worse state than she was when we started this. Back to square one. Or square zero!!!

Well said about food. When I see D take a big lick of frosting, grab an extra serving of potatoes, or refill her glass with milk, it brings back lovely memories of the girl she was before ED got stuck in her head! Again, so glad for your success and I pray that your uni D continues to thrive!!! [smile]
Seekingsunshine, found many rays of hope in the last year of treatment. D 14yr old- restricted since about age 9-10, dx at 13 when I felt she wasn't growing, FBT/maudsley summer 2015, WR Sept 2015, but have to keep chasing moving target. Not ready for eating independence.
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