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

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Hi, my D is 10 months on from diagnosis of RAN. We were doing really well until a couple of months ago when ED got a hold again & my D really started to exercise more. We stopped it in its tracks but my D is left with a fear of sitting down. It's been really tough especially in the school environment, but the staff have been very sympathetic & accommodate her to keep her there. She's now on Fluroxetine to calm the anxiety but I'd be really interested to know if you have experienced the standing up problem & how long it continued for.
I was in your exact shoes on this one. My D was diagnosed at ten also. One of the hardest things to deal with was her exercise compulsion which is what the incessant standing is. They are not allowed to rest. ED sees sitting as lazy. When we really started to get worried about my d we were noticing that she never sat. She squatted, she stood to watch tv. She stood to practice piano. She " hovered" over chairs and squatted in the car. It was absolutely horrific.

Here's what we did: we started off by setting a timer for say 3 minutes. If she could keep her butt on the chair she got to " do something" like go to a movie or get a pedicure ( which she moaned about bc that meant sitting- yes my rewards were intentional lol). I told her we didn't care if she screamed and yelled- as long as the butt stayed on the chair. We also instituted a 3 strikes rule. We gave 2 gentle reminders to sit and on the third strike she was required to have a few ounces of ensure. I spent a lot of time saying " butt on chair" " feet on the ground" etc. I'm going to be brutally honest- we were relentless with this to break the standing thing. I slept with her for a year. She couldn't sleep bc Ed made her arch off of the bed and called her lazy even for sleeping. Her night terrors were horrific. When home I shadowed her always.

At school ( yes she did attend school) I met with her teachers to make it clear that she was not to " run to the office" to make copies etc. Her teacher let her use pen ( we made her) so she couldn't break her lead and get up 30 times to sharpen her pencil or use an eraser to burn calories violently erasing. She was out of gym and recess and all activity. The art teacher had her come help her during those times. Her teacher and my daughter came up with a thing where the teacher would tug on her ear if my D wasn't sitting on her butt. I kept in close contact with her teacher.

We got 25-30 pounds on her in those first 4 months and nipped all of the exercise behaviors ( and OCD) in the butt. ALL of it faded and disappeared over time- for us within 4 months.

With a child this age you must never back down from fats and calories. Growth will kick in.
Puberty etc. there really is no magic number with weight. When my daughter started growing it was 8 inches and full puberty in that first 2 years. She required very high calories. She gained a total of 62 pounds from diagnosis to now.
My advice is to go at this with everything you've got. She is young and that is in your favor.

My daughter is now 15.5 and living a life free from Ed. Now I have a hard time getting her off of the couch! Those first 3 years were pretty intense, but it is worth it in the end .

Keep going. You can do this.
Persistent, consistent vigilance!
Wow, so good to hear that your D is well now. Did your D relapse in the first 3 years after refeeding?
No full on " relapse" but lots of ups and downs.
A few months into refeeding she developed projectile vommitting at the table. It was all anxiety related. We had to spoon feed her sips and bites every few minutes for a few days to break that and it did work thank god.

We had times in the beginning after hitting our first solid weight where we thought maybe we could back off a tiny bit on food. That was an EPIC mistake. She would lose weight immediately and in fact we had to continue to increase fats and calories as growth/puberty kicked in. They need consistent nutrition . Even a busy weekend if we would have to squeeze in things in an erratic schedule she would lose weight.

After we figured all of that out and time went on we went through a ton of food hiding and lunch ditching. When we started to let out the leash a bit and let her have her milkshake with a friend in a room without me, she would dump it in a game box or in the plant. She once lost 7 lbs in a week and i followed her to school to see her dumping 1200 cals of noodles from her thermos. We had to eat with her at school most of 5,6 and all of 7 th grade. That was the biggest obstacle to overcome for her in all of this.

It just takes TIME and patience and vigilance. Learning to " speak eating disorder"- it is its own language. Reading body language and eyes and listening to voice pitch etc. when to know that when your child begs to do xyz- and in your gut you know it's ED asking, not your child.

So lots of ups and downs. Lots of learning as we went through it. That's why I stay on feast- to try to help someone like you...and to give you hope.
Persistent, consistent vigilance!
Thank you, mamabear, for staying on this site and for your regular and helpful posts. My 12-year-old is WR after 2 months of refeeding and FBT. She was a compulsive exerciser as well before her diagnosis. Today she weighed in at 20 pounds above her lowest weight (which was exactly two months ago, the day she was admitted to the hospital with a heart rate of 44). Over the past few weeks we've been permitting a little bit more activity (sledding after last weekend's big snowstorm, walking around the block with her best friend) and have slacked off a bit on the twice-daily snacks (though her meals are still large and very caloric). But she got her first period last week and has grown 1 cm in the past two weeks (her first height increase in a long time), so your post is an excellent reminder for me that we cannot stop feeding and feeding and watching and watching. Complacency could be our worst enemy right now. Your "persistent, constant vigilance" signature is something that is always in my mind!

D diagnosed with AN November 2015 , the week she turned 12. Gaining slowly but steadily, fingers crossed...
Complacency is absolutely your worst enemy, specifically in this age range of massive rgrowth and change. My 12 year old boy has grown 3 inches in 3 months and absolutely aches. He is hungry ALL of the time. He has just started.

Don't back down. Keep watching. Kerp checking for food hiding. Even though I tried to prepare myself it was always hard to find the rotting hidden food. I still find it years later- most recently in a box in my storage room.

Keep weight up. Keep challenging Ed. Don't be content with status quo.
Persistent, consistent vigilance!
I have to give giant props to mamabear. The reason her d hasn't relapsed is because of her vigilance. She doesn't take her eye off the ball for a second, and acts immediately if she sees a problem. Can I point out that she has done this without FBT support? I don't advocate doing this on your own - professional support can be huge - but it's not always available. And none of us need permission from a therapist to feed our child.

Thanks, mamabear, for leaving the lights on for parents here.
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
Thanks Colleen!
You know when I first started this all I wanted was to hear from someone who had a child that was WELL. It was so terrifying and overwhelming and horrific and it truly feels impossible and that it will never end. Every book I read ended in relapse.
I'm not saying I have a crystal ball or that Ed will never come back, but I think our chances go up the longer our loved ones STAY at a very healthy weight and have no Ed behaviors. This means staying vigilant. A few months ago my D was eating good weird. We jumped on it and she self- corrected it immediately. Not letting Ed creep back in even in a minuscule way is our goal.
Persistent, consistent vigilance!
My D was made to constantly stand by her ED. She would also squat in the car, jig and need to punish herself if she could not get out and walk after even a short drive. One of the saddest times for me was at the cinema, holding her hand while she stood for the whole movie. At this stage of her illness she denied herself any comfort, she was suffering from agrophobia and to have allowed herself the joy of going to the movies was huge in itself. We decided for her that full nutrician was, at this time all we would insist on. Eating was so hard and scary we concentrated on this first. She had no life to stop if she did not eat so L S U Y E was not going to work for us . We used distraction and full time supervision. As the weight came back on we chipped away at the behaviours and on Mother's Day 9 months after diagnosis I walked out to find D smiling at me on the couch. Sitting, relaxed. It was the best Mother's Day gift ever. We are now 2 and a half years post diagnosis. D is eating without fear, all behaviours gone, WR and doing all the things an almost 18year old should. We are currently on a long vacation, D is relaxed, loving all the different food available in a foreign country, breezed through the plane ride to get here. Hang in there, this forum saved my D life and gave me a haven of knowledge when I needed it. I really could not have done it without all the wonderful people here.
Thanks for sharing your story. I'm so pleased that you & your D have got your lives back- that's my dream
Hi claretre, my then 12yrold d starting with exercising but when she got too weak for that started to stand ALL day long. Her feet would turn blue/purple, be freezing cold to touch and she had very dry feet. Like others said she would do work on the laptop standing up or just simply stand in her room all day long. Before finding this site and before being admitted to hospital we had no idea how to tackle this situation. In the evening we would encourage her to sit for a programme in front of the TV. It wasn't until IP that they broke this habit of hers. All patients are watched 24 hours a day, even in the toilet/bathroom so that all exercise could be totally stamped out. They also had sitting programmes where they were made to sit in a supervised room. Any twitching, jigging even curling of your toes was quickly observed and the girls were told to rectify it. My d even got told off for walking on her tiptoes until I explained that this is her usual walk since young childhood. In the beginning the girls weren't even allowed out in the garden and were totally housebound until the reached a certain weight percentage. They were then slowly allowed out in the garden. They had tiered activity levels. Level 1 being housebound, level 2 being allowed in garden, level 3 being allowed outside hospital for day trips/home visits and level 4 being allowed to participate in 30mins swimming/yoga activities. These activity levels were all linked with their weight gain and eating all food provided within their time limit.
The hospital was run like a military prison in its rules on exercise and food intake but boy did it work.
We only had a small blip on exercising this summer coz we had really increased her weight over the summer. But coz she wasn't doing anything all day other than sit in her room we allowed her to do. Luckily it didn't become obsessional otherwise we would have clamped down like the hospital had dealt with it. Thankfully she returned to school and all exercise ceased. Now fully WR for probably 9 months she absolutely hates any exercise. She hides in PE so she doesn't have to do it. Since I explained her history of AN to her PE teacher she seems to be turning a blind eye to her avoidance tactics.
I know how horrible it is when you're at that stage but keep going and it will get better. Keep the food on. Try and put in place rules to eliminate exercise/constant standing if you can. All the ED behaviours need to be challenged. With WR hopefully things will improve for your d and you all. Keep battling. You're doing a great job.