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

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seekingsunshine
I would love any advice or thoughts. If you haven't read my other posts, D is 13.5 and in the low end of normal range, but seems to be growing pretty steadily now that she is eating more and exercising less. We started this stressful re feeding right after she turned 13 and we realized she had a huge fear of fat/overeating, had lost 1/2lb while growing an inch, and we saw her BMI steadily dropping since age 9.

While we are not in danger zone, when she was given more freedom to choose food and resumed basketball, the result was a 3lb loss in a month. So we have been back on control mode.

D has male older siblings who sort of get it, but can say stupid things despite our ongoing reminders that food is GOOD and nourishing, and obsessing over physical fitness is damaging to her.

D has mellowed on the crazy intensity about her grads a bit, compared to last year when there were tears over 95% grades or only 2pts scored in bball, but all her focus is on being completely ticked off at me for forcing her to gain weight. H has graciously taken over much of the plating over the holidays. He felt awful that he would come in and find me in tears alone in our room after ED had lashed out all day.

I am in counseling, and went on Zoloft a few years ago for my own anxiety issues. Tried to go off, but now see that I need some support, whether it be the counseling or meds if I am going to be strong for D.

Here is my angst: where do we go now?

We did the whole FBT team over the summer (May-August). Did IOP. Are checked every month to 6weeks at hospital by adolescent dr. Therapy was hell. That's the only word for it. D hates every minute of it, and we tried several therapists. I am now at a loss, because I don't want to keep shopping for a therapist for her, I am living each day based in what she has or hasn't eaten, I don't want ED to steal all our joy for the next 5 years or more.

We at one point talked about meds for her, but since she has been eating and gaining after we tightened the reigns, it's hard to justify. It is more cranky, sassy, nasty attitude about 16 hr/day (when she isn't asleep. Ha)
H really doesn't want her to go on anything if we can do this as long as possible on our own. On the other hand are we just being stoic? The dr's all agreed "maybe it would help, along w therapy," but if she is stable weight wise, we aren't being pressured to go that route.

Is there a website of "awesome therapists for 13 yr old girls recovering from body loathing and restricting and some anxiety who can get through her stubborn demeanor and actually be of benefit"???? I have talked to other moms who tried in vain to get counseling for their kids, but not dealing w ED specialists. The only moms I know who dealt w ED went the meds and therapy route, and their D's were willing to do those.

Tired of no direction besides the next meal,
Seeking sunshine
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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Boysmum
We have had success with a play therapist for our 13 yr old son after he was completely resistant to any kind of therapy that was food related. (Lay on the ground face down with hands over his ears at one memorable appointment!). He's just finished 6 weeks of cognitive remediation therapy which involves playing games and doing puzzles to encourage them to think about how the way they think has brought them to this point. He has now agreed to start cognitive behavioural therapy with the same play therapist and has agreed to discuss with her why it's sometimes very hard to eat.
It might be another avenue to try, although I know it may be hard to find a play therapist who also specialises in ED, this one is costing £140 per session!!! Insurance is paying up to £2,000 and then we have to.
13 yr old son diagnosed April 2015 with Anorexia.
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seekingsunshine
Thanks to you both! It is always helpful to not feel like I am on an island on my own...the idea of a play therapist is intriguing.
One of the therapists in our group over the summer did a lot of arts/crafts type work, but in the end I could tell all D wanted was to let ED stay and hang out since it gives her a sense of comfort to control her eating and body size. Completely unhealthy, I realize.

I have also thought about finding someone who doesn't seem to grill her on feelings and eating, but let her vent as needed.

My other big dilemma as I have mentioned (and also read extensively about) is her involvement or UNinvolvement in basketball. The toughest thing to understand is whether she does love to play, or if she only wants to play for the sake of being good at a sport. I know she enjoys her teammates. Also it is not a daily workout, more like a couple times a week. But still, it's so confusing to know if it's a big trigger or just one more thing that played a role in all of this.

So for now she is recovering from an injury, which was convenient since she needed to slow down and eat more.
But specialist had cleared her for reasonable ( a few hours a week) basketball related activity.
H is completely torn, as he does not want to derail her progress. (I read an old post that said "if it would slow down our progress, it went away")--but I also have read about people whose children were able to find the balance and still enjoy activity. I asked H if he really thinks she loves the sport, or if she just wants to be that person. He was not sure, he just knows the joy he has seen in her over the years when they have a great game, when the players are having fun together, and the teammate bonding too.

I feel equipped to help her gain, but at a loss how to maintain, gently guide or firmly direct her extracurricular activities....
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
seekingsunshine wrote:
....Therapy was hell. That's the only word for it. D hates every minute of it, and we tried several therapists. I am now at a loss, because I don't want to keep shopping for a therapist for her, I am living each day based in what she has or hasn't eaten....


Do you think it is worth considering giving her a choice: Either she makes progress by eating whatever and however much you require and reducing the nastiness, or try another therapist?  I doubt it would be possible for her to suddenly become a model child, but perhaps incremental progress toward greater civility would be a possibility.

Keep swimming.

xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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momon
We have been at this recovery business since March 2013 as d fell ill at 10 and she just turned 13. Your description sounds very like my girl lately, sassy, snarky rude, kind of mean and it's not just around the food! I am betting that we are seeing adolescent girl in that stuff even more than ED. If they had no ED it would be easier to take as we'd worry less.  
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mnmomUSA
I'm just going to say this, as a parent 2.5+ years into this thing, but 6 months or so is still "early days."  And, treading along at "low end" of normal wasn't enough for us.  We see MUCH better mood, behaviors, etc when her weight is above the 50th percentile for her age (when she had historically tracked at the sub 30th percentile).  I mistakenly thought that getting her back to this range (around the 30th percentile) would be enough, and I allowed her to be at this "low end" of normal for too long.  Pushing her past this, and up to the 50th percentile, and it got way better for us.  Way better.  Lose even a couple of pounds, and bam, we are right back to the ED thoughts and behaviors.  It's quite amazing really.  

So, one, I would push her weight up a bit, and see where that gets you.  

Two, there is a certain amount of irritating behaviors that teen girls exhibit.  LOL.  (that's an understatement).  The trick is being able to separate "normal" teen behaviors from ED behaviors.  Nastiness around food is almost certainly ED.  Nastiness around you asking about homework, getting chores done, keeping room clean, that's probably teen stuff.

Three, once my D had reached a good weight, and still had ED thoughts, we added fluoxetine to the mix.  This seems to be helping quite a bit to lessen her anxiety and keep her going in a positive direction.  Anti-deps probably don't work in the underweight, but for those at a good weight, they definitely can help.  Has this been discussed at all with her treating physicians?

This is an exhausting battle for caregivers.  It sounds like you are engaging in good self-care, which is SO important.  I wish somehow a magic wand could be waved to speed things up, but it takes a lot of time.  I truly believe this is where the Locke and LaGrange FBT model goes off track....you read their book, and believe (based on that) that a few months and 20 appointments will do the trick to get them back on track.  I sure naively believed that, and I wish it were true.  For us, sadly, it was NOT true.  We've been doing this for 2.5+ years and while I now believe we are *almost* there, it has taken every bit of that time to do it.  I think I'd have been better served in those early days to know that it takes time, measured in years and not months.  From following these boards for that entire period of time, I would say that is true for most people.  Sure, there are those "lucky few" who seem to get to recovery much quicker than that, but they are the exception, not the rule.  Part of my own anxiety in those early days was feeling that somehow *I* was screwing it up since she was taking "so long" to get to recovery.  As it turns out, she's pretty average in that regard, not abnormal at all.  

HTH
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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seekingsunshine
Torie wrote:
seekingsunshine wrote:
....Therapy was hell. That's the only word for it. D hates every minute of it, and we tried several therapists. I am now at a loss, because I don't want to keep shopping for a therapist for her, I am living each day based in what she has or hasn't eaten....


Do you think it is worth considering giving her a choice: Either she makes progress by eating whatever and however much you require and reducing the nastiness, or try another therapist?  I doubt it would be possible for her to suddenly become a model child, but perhaps incremental progress toward greater civility would be a possibility.

Keep swimming.

xx

-Torie


That may work,Torie. When D was first WR around August, she agreed to stay on track and if her habits and weight slipped, then back to therapy. This seemed to work until she grew and inch and started to restrict again. Perhaps we need this to be more black and white so ED cannot try to argue a compromise. Thank you!
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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seekingsunshine
Momon, if only we could tell when the roll of eyes were from D or ED!
Mnmomusa, isn't it true, 6 months feels like an eternity but is just a drop in the ocean. I sort of wish our FBT team last summer had been clearer about the many uncertain timelines. Perhaps they were, and H and I did not want to believe it. I thought I was a champion knowing about weight and diet issues, yet this turned everything I had learned upside down.
Daphne, our D acts a bit exercise compulsive when stressed or around others who are in great shape (especially her older brothers who are adults now) but day to day she more lays around lately. When she plays basketball she understandably wants to improve her strength and agility. It's just critical that we not let that get in the way of her recovery.

Is this a correct statement? I told H last night " some children/teens are not able to play sports in a healthy way because they will always be tormented by a hardwired (Ed voice) to be better"

And if so how to tell?
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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Colleen
I would just say:  Don't be in a hurry to re-introduce exercise.  The very fact that you are asking this question means that there is some niggling doubt in your mind.  Listen to that intuition.  The downside to delaying sport is so much smaller and easier to deal with than relapse or continued marginal mental health.

We didn't have the exercise compulsion, but we see ED thoughts/behaviors in our girl with even limited exercise, even now as an adult.  She can walk the dog, but hiking in the mountains causes a setback.  Sucks.  I know there are kids who've successfully gone back to sport.  Amoma's d is a very good soccer player and Amoma became our resident expert on feeding through sport.  She has deleted her registration but you can still find some of her posts through a search on her name.  Here's one that might be relevant:  Calling re: advice on fueling for sports  She was very mindful about fuel--not just calories but the balance of carbs, proteins and fats.  It's more than just a simple arithmetic of calories in vs calories out. It's also not a simple 'maintaining weight = maintaining mental health'.  Even without weight loss, the act of exercising can exacerbate other aspects of ED and all its awful co-morbids.  Maintaining weight is not the only criteria that you should assess when deciding if exercise is causing trouble.

It's a tough position as a parent, especially when the good parts of sport participation get lost to this illness.
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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WeNWinning
I attribute a lot of the difficulty with sports not just about body size, muscles, etc but also the perfectionism of many of our children.  The drive to achieve is destructive when it is fueled by their ED.  I saw my D struggle with this early on - that she could not stop her training of whatever sport she took on  - with an obsessive/compulsive drive to excel and get better at the sport.  She never felt good enough.

It harmed her and she told me later that her athletics were part of her ED.  It transferred over into other areas of her life as well.

Be careful with sports and do listen to your instincts - weigh the benefits against the harm it will do to her ED 
My D is similar to Colleen's where any activity that is done to excess and causes negative energy balance is a trigger to her ED
WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
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Psycho_Mom
Hi,

Our d was and is an athlete, and I feel that we were successfully able to help her navigate through ed and back to a healthy relationship to sports. She is now in remission and plays varsity basketball and loves it. Some things we did to help her:

1. Adequate weight restoration. Without this first one, ya got nothing. And adequate means ENOUGH FOR THE PARTICULAR PERSON. Not an average based on a lot of irrelevant other people. Basically, when you see symptoms begin to abate, add a little more. Follow an individual growth chart, and keep upping the weight range as the sufferer needs. (Our d was 16 when wr, so not as hard as chasing puberty growth, but still, I upped the weight range every six months or so, and d hated it every time.)

2. Clarify your priorities. Sport is expendable, health is not. Our d had to stop all sports for about 6 months, and when she went back to bball it was slowly and cautiously. A 2x a week skills class. We said, if your weight goes down (we weighed weekly) or if we see anything that causes us to think that bball isn't good for your mental health, then it stops. 

3. Change your and her relationship to sport. Sports, or any other physical activity, needs to be FOR FUN only. Teasing out whether or not she was playing bball for ed reasons was hard and confusing, and it took a while and a lot of talking and healing to sort it out. Basically, we told d that physical activity for losing weight or "getting in shape" or "being the best" or any other reason than fun, was never going to be a safe thing for her to do. (Going to the gym and wanting to "get in shape" implies that one is not happy with the shape one has, and gyms tend to be full of people who are not doing it for fun and whose attitudes could be dangerous to d). Also extreme sports were likely never going to be safe for her. But that physical activity for FUN was a good part of life that we hoped and thought she would be able to return to. And she has. Btw, she has not returned to track or Cross Country (actually we vetoed them, but now she doens't want to do them anyway).

4. Choose activities wisely. There are some sports that are super highly perfectionistic, and would tend I think to be detrimental to recovery. Our d was excellent at dressage. You have never ever heard anybody more perfectionistic than a dressage coach. Sit this way, adjust your calf muscle an inch, balance slightly more that way, move your wrist to this different angle. It's a very cool and fascinating sport, because it's all about communication between man and animal. But for someone sufferering perfectionism as a symptom of illness, it's bad. D stopped and hasn't been back.
Bball however is a great sport for someone recovering, I think. It's very anti-perfectionistic. Want to make more baskets? Take more shots!  IT's not expected that they all go in. Foul someone? Yay, fouls are good! Team sports are great, and a fast paced sport tends to keep someone's mind on the sport, not on their fear of having fat legs or whatever. We talked with d about all this, about perfectionism and staying in the moment (mindfulness, basic DBT technique). It's not like she grasped it all at once, or her body image anxiety went away all at once. It was gradual. Also, bball has sensible non-revealing clothes that help someone not worry about what they look like.  Unlike many other women's sports. (Boo beach volleyball, Yay bball!!)

5. Be aware of how incredibly much energy physical activity takes, and act accordingly. 600 cals an hour, for bball, for a normal teen. A teen recovering from an is NOT normal. They need lots more. For the first while of return to sport our d had an extra smoothie on bball days, and those smoothies are 1200 cals. AFter that she wanted to eat "like a normal person" and that was an opportunity to teach her how much she needed to fuel for sports (yes, Amoma's post is excellent. Or I wrote a one-page synopsis of it, which I think you can find if you search for Fueling for Sports.) Now d doesn't leave for bball practice without a bar and a chocolate milk, and she has an extra sandwich and fruit on bball days plus whatever snacks the team has.

Anyway, that got long, 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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