Registered: 1515285551 Posts: 4
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Hello all, new posting here although I have been gleaning helpful information from the forum for a few months. Some background:
We live in Atlanta, GA. My 16 year old daughter was formally diagnosed with RAN beginning October 2017. We had been trying to figure out what was going on since she was 12, including feeding her at home with a nutritionist and no understanding of what we were doing. She had not grown or gained weight since she was that age and has never gone through puberty. Finally found a provider who knew what she was doing, took one look at my 4’11” 65 lb daughter and sent her straight to the hospital. She then moved to ERC in Denver and just hit WR at 120 lbs. 55 lbs in 3 months; currently my version of a miracle. My husband ( who has been wonderful throughout, flying to Denver every weekend to be with our daughter) and I are getting ready to go out this week to start PHP. After that we will be moving her to IOP back home (as long as I can get insurance to cooperate).
I have been spending this weekend getting ready for bring her back home as we will bring her back with us in early February; spent the day clearing all of her itty bitty old clothes out of the closet for example. I have also spent the last 3 months reading everything I could about anorexia ( including on this forum). I would love any thoughts from the wise folks here on the forum on a couple of things:
1). Should I remove all of her rock climbing gear? She is a huge climber (with a massive exercise compulsion). Getting back to climbing is still her main motivation for gaining weight. We have no intention of letting her return to climbing now or in the near future, but should I move out all of her ropes/harnesses/carabiners, etc from her room?
2). Should we replace her bed before she gets home? She sleeps on a very thin futon which feels to me like it is a manifestation of some of the very disordered/confused/hair shirt like behavior I think some anorexics exhibit. I would like to get her something more comfortable to sleep on as she had been essentially sleeping on the floor, but she has told me that she “dreams” of her bed back home. I would appreciate any perspectives especially from those who’s kids exhibited this extreme asceticism in areas not directly related to eating. Do I just replace and see if she comments/ risk a meltdown/force a confrontation/“exposure”.
Any other tips you all have to prep our house (and ourselves!) to start taking over the driving role, fighting against this disorder would be most sincerely appreciated.
She has been diagnosed with OCD as well.
Thank you all so much.
Registered: 1460007510 Posts: 3
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Hello feeding, welcome and wow! 55 lbs in 3 months IS a miracle - kudos to your family and treatment team (and especially your d) on fabulous work! My daughter was around same age and spot last summer, with major exercise compulsion to manage. In my experience, I would say 'yes' to both questions - remove climbing equipment and replace bed before she comes back home. Once she sees those things in place, they will be much harder to remove later, and I'd almost guarantee that her anxiety over missing those items will be less than the tangle of emotions they'd provoke at seeing again. You can reassure her that equipment is not gone, just on hold for time being. For the bed, an upgrade to similar style but thicker/plusher mattress would be a good change - my daughter also had some ascetic traits (so much self-denial!), and this required us pushing for changes frequently. I always tried to keep discussions about the changes light and breezy, along with a little warning about coming change ahead of time, which seemed to help her move on faster. Other house changes we made were painting over her mirrored closet doors to prevent body checking, and switching to smaller bathroom mirrors (which actually looked much better anyway!). I also slept in her room for about 6 weeks to help reset 'just a quick workout' habit. She really hated that, but went a loooong way to curb exercise urge. Best of luck, you're already doing a great job!
Registered: 1284535839 Posts: 3,591
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Welcome to the forum, sorry that you have had to find your way here. An amazing job of 55lb in 3months. Hopefully she has started to grow with this and will soon be or has started periods.
Be prepared for a tough return home. Transitions are hard for our kids, they like predictability. I would suggest starting out at home as you mean to continue, so out with the climbing equipment, into storage, and the bed too. Be clear about what is going to happen from the start, that is meals continued as planned, no exceptions. Have a plan for that first refusal clear in your mind and then a plan B and C. She is likely to feel compelled to test the boundaries when she gets home and the clearer you are the easier it will be. My D was also very strong on self denial for all sorts of things. There was nothing, nor no one she wanted when at her most ill. She didn't have the hard bed, but then how did that eventuate? Best of luck bringing her home. It sounds as though there is a long planning phase. __________________ D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Registered: 1496061527 Posts: 1,124
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a warm welcome from Germany and so sorry that you have to be here. I would suggest the same as the others: put away all the old clothes, all the climbing stuff, the old bed It is easier if she doesn´t see it. Tell her the bed needed to be changed because of age and that she can choose another one in a funrniture shop if hse doesn´t like it. Get into a fixed routine from hour one at home without any exeptions. When she realizes that you mean it serious it will be easier after the first melt down. Think about taking away mirrors and everything that can be used for self harm. Take away door keys at her room and the bathroom. Transition to the home is a difficult time. Think about possibilities of locking doors and windows if needed. Some kids here ran away or tried to get out of the windows. I do not want to make you frightened. Maybe nothing will happen. But we for example forgot to take away her door key and refeeding is impossible if you are closed out And we didn´t know what could be used for self harm. Knifes and scissors are easy, but our d took a paper clip then. Hope you will be prepared 110%. Take as much sleep as possible, fill your fridge and do something nice for yourself and hubby every week if possible. Tina72
Registered: 1515285551 Posts: 4
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Thank you all! That’s kind of what I was thinking I should do, so I’ll get on removing her gear and getting a new bed today. Tina72, I didn’t even think about the self harm and escape-it’s frightening to think of what she could do with 60 feet of climbing rope...Vielen Dank!
FoodSupport, she has grown a smidge (not quite an inch) so we’re really hoping she’ll grow some more. From what I’ve read here it may be several months/years of WR to get any growth and get puberty started. I’m curious if anyone here had a kid who had never started puberty, had it delayed for so long (essentially 4 years for my d). Anything I should expect in terms of how long before it hit and what I should be prepared for? She is very socially delayed because of the delayed puberty, so I’m expecting social reintegration back to high school to be a huge stumbling block for her. We’re only planning to send her for two classes, art and band, to start.
Registered: 1436500021 Posts: 906
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Welcome to ATDT. So glad you and your husband figured out what was going on and were able to get your daughter into treatment and gaining weight. I second everyone here who thinks you should clean out her clothes and get her a new bed. Be prepared for a tantrum when she sees the clothes are gone. (Speaking from experience) I also think that cleaning out the rock climbing equipment and storing it somewhere else is necessary since it will only be a reminder to her. Our d. was off exercise for an entire year after getting out of residential. I found it helpful to have my d's team confirm to her that she was not to exercise when she came home. Another thing that I did was change the place where we ate meals. If you can do this then it feels like a clean start. We had been eating at the kitchen table and it was the place where we had a lot of conflict about eating. I had the dining room newly painted and the floors refinished while she was away, and when she came home I served her meals in the dining room and did my best to up my food game and make things taste really good and the meals to be really pleasant. No talking about anything difficult or negative while eating. Calm prompting if eating seemed to stall or be difficult and then a change of subject. Flowers on the table, nice dinnerware, calming music in the background etc. The change of scene and the change in how we did things took away some of the bad memories of food refusal. It sounds like a great idea to get her back in school slowly starting with art and band if those are the classes she likes best. Music and art are great outlets when someone has been ill but is well enough to start reintegrating back into their lives. Also, we found that having a meal schedule is important. We kept to the schedule that the treatment center had used, and had meals and snacks at the same time for months, before starting to introduce a little flexibility. By flexibility, I mean integrating real life, so if she needed to do something or go somewhere, we could change the time of the meals slightly but there were still 3 meals and 2 snacks every day. I didn't let her sleep late but woke her up at 9 am for breakfast. Hope all will go well in the PHP and for your daughter's transition home in Feb. warmly, Kali __________________ Food=Love
Registered: 1209507043 Posts: 2,668
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Welcome! Congratulations from me too on the weight gain! The start of menstruation is triggered primarily by weight, not height or biological age. The trigger weight is around 45kgs, which is around 99 pounds. Clearly there will be slight variations in each girl as to when periods start but this is generally considered the point in puberty which will prompt the start of periods. I hope this helps. __________________ Believe you can and you're halfway there. Theodore Roosevelt.
Registered: 1515285551 Posts: 4
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Thanks Melstev, that is good to know (plus gives me a conversion ratio when you guys talk kilos!). She’s over that weight now so we’ll just have to keep her there or above and see how it goes. Acc123 I took your advice and went ahead and ordered her a much better/thicker futon. I like the idea of getting her therapy team to reinforce that she won’t be able to exercise upon return home, so I’ll follow up with them on that. All her climbing gear has been relegated to the crawl space, I made sure I could unlock her bedroom door (and all other interior ones) from the outside, and Home Depot is rekeying our external locks to double sided key entry as we speak. Hopefully these are the housing basics and now we will just have to focus on keeping her eating...
Thanks again for all the wonderful advice.