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

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alexintx
Hi, I haven't posted here in a while. I have several unrelated questions, but I thought I'd just post them in an update and see if anyone has advice about any of it. [smile]

In short summary: my dd is 17 now and was diagnosed in August with RAN. She had been restricting for about 5 or so months. She was WR around Nov, then we stopped counting calories and she slipped down about 5 lbs over the next 6 or so weeks (with the holidays and a ski trip, we had a long gap between doctor and therapist visits). So, starting late Jan, we ramped up the food intake. She is back to WR as of a few weeks ago (back to original weight before all this started). It seems that she still needs 3300 calories to maintain her weight. She is very active -- lifting weights 40 minutes three times a week, plus she skates (roller derby) two hours twice a week.

Her rules about food have relaxed a lot -- finally. For many months, even after being initially WR, "junk food" (which included anything that wouldn't be considered "clean") still caused a lot of anxiety. She would eat it, but never by choice. She is now making a lot more flexible choices on her own -- although she still talks herself into it. She was just packing her lunch and she said out loud, really to herself, "I'm going to put two pieces of Easter candy in my lunch because that is a normal thing to do. Old me wouldn't have thought twice about it." So it's not perfect, but I'm thrilled that she us making choices like this. I also surprised her with ravioli pasta last night (I had no dinner plan and stopped at the store on the way home), and she didn't even miss a beat. Pasta used to be a big fear food, and even recently she would have felt very anxious and struggled with it.

Mentally, she is doing pretty well. She is still anxious, but it's much better. She is taking Prozac and is working on coping skills. Her biggest issue is perfectionism, which she is working on. She is managing her classes well and actually working in down time too, but she is taking the ACT in a couple of weeks, and that is a big source of stress for her. Honestly, I wonder if she needs a therapist that specializes in perfectionism to take over as her ED symptoms subside. Has anyone done treatment specifically for perfectionism?

My other concern is that she still hasn't gotten a period back. She hasn't had a full period since last March, so it's been a little over a year. She did have one day of light bleeding in November, but nothing else. She has been seeing an adolescent specialist MD who sees a lot of ED cases, and see seems surprised that she hasn't gotten her period back yet. She did bloodwork last week and said her hormones are "borderline" (not quite sure what that means; I have only spoken with a nurse), and she started her on 10 days of progesterone to see if we could jump start her period. She is on day 6 and nothing so far. I'd love any thoughts you all have about this.

Lastly, she has been given an opportunity to do an internship in another state (about 12 hours away) for about 6 weeks this summer. She would stay with a family member, who is well informed about what has been going on. We also have discussed going to visit at the halfway mark to check in and make sure she us still on track. Still, even with all of these precautions, I'm worried. She's scared too. She got really sick last summer when she went to music camp for 6 weeks, so the fact that this is the same sort of timeframe adds to her fear. (That was staying in a dorm with 50 other perfectionist, elite classical musicians with no adults really supervising -- so a totally different situation.) She's torn because she wants to do it because it's a great opportunity, sounds fun, and she also doesn't want to live a life based on fear. But she feels like she has control of things here and doesn't want to rock the boat and thinking about it causes anxiety. I agree with all of her worries, but I also think it would be a good chance for her to practice independence in a safe environment. Her therapist thinks she should do it. I'd love to hear from those of you with kids that have gone off on their own after anorexia. How do you know when it's time?

Thanks for making it this far. [smile] Any thoughts/advice is appreciated!
17yo daughter diagnosed RAN 8/15 after about 5 months of restriction. WR 11/15. Focusing now on intuitive eating and managing anxiety. Hanging onto the roller coaster for dear life!
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Psycho_Mom
Hi,

Sounds like your d is making progress; yay!!!

You may have noted that there's a current thread of mine because my d (wr aug 2013) is on a three week international trip and this is a big step in independent eating for her. You ask how to know when someone in recovery is well enough to go, so I'll tell you how we progressed to our d taking this step.

First, she was wr. I continued to supervise every meal and snack. Then, she started having unsupervised lunch at school. This went well. Then, she started having unsupervised snack at school. This didn't go well; I kept finding uneaten snacks. Talked to d, she admitted that it was the situation (eating on the run in hallway, eating when other kids might not be) that was difficult. We figured out things that would work for her.
She progressed to having one snack or meal a day on her own, if something was happening, like going to a friends or school event. We'd discuss what she'd eat beforehand and agree.
Then she went on an all day school outing. WE again discussed and agreed on what she'd eat the whole day, and she knew she needed 3 meals 3 snacks and that she coulnd't go longer than 4 hours without eating.
Then some months later she did a 3 day school camping trip. MUCH preparation, including making sure there was one teacher on the trip who knew her health challenge (no one else at her school knew.) She lost three pounds on the trip, so she didn't get to go on another one until we worked on stuff, learned.
Then tried again a few months later, 3 day trip. She only lost 2 pounds.
Then after a year of wr she went on a trip without me for four days. Only lost a few pounds.
Then last summer (2 years post wr) she went on a two week summer camp. I knew she'd receive all meals there, that there wouldn't be a lot of strenuous activity, and that I could go get her if things went south. She also took along a scale and weighed herself half way through the camp, had lost a few pounds, and we talked on the phone about what she needed to do about that. She lost 5 pounds in the two weeks.

More time, more learning. It's now nearly 3 years post wr, d has been feeding herself independently at home for some time and maintaining her weight, so we thought she was ready for this three week trip. She again has a scale along and will weigh weekly and we'll talk if there's problems. She again has a contact adult on the trip, someone she has told about her health, so that if there's any problem on the trip that would affect her ability to eat enough, she can go to this person without the stress of having to explain the whole long history.

So, that's a long story, eh? Some sufferers don't take as long as our d to relearn how much she needs to eat. Along the journey I said "no" to a lot of travel opportunities that d just simply wasn't ready for. That was hard.

But the point is, start with shorter trips or challenges and if successful, work up. Have safeguards in place. Be flexible and creative (maybe your d could go for half the camp, if six weeks is too long? Maybe you could visit her weekly?) And don't hesitate to put your d's health ahead of any other consideration. 

I can tell you that even if my d does well for three weeks, I wouldn't send her off somewhere for six weeks without safeguards and without seeing her in person at least once. 

I'll also say that, over these past three years, I let my d be in situations where she'd only risk losing a couple of pounds, and when she got home I made sure those went right back on. So that over these years d's weight has remained very steady. I think this made my d's t cavalier, as well, about sending her off places. T's have NO CLUE how hard it is to get weight back on, and NO CLUE how much weight can be lost and damage can be done in six weeks. 

You know, if your d is scared, that's a really good sign of brain healing--she doens't want to get sick again, but she knows the power of the illness. MY d had that phase too. It meant she was ready to try some independence, but that she still needed me to assure that she'd stay healthy, and be ready to step in if she didn't. Your d still needs a safety net, and that's you.

Also, if her periods naven't returned she may not be ready to go anywhere. Maybe that should get sorted out before anything else.

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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Foodsupport_AUS
Welcome back. Your D sounds like she is making good progress. Great effort. 
As regards your D's period. You mention that she is around the same weight she was before she got ill. It is possible she needs to be at a higher weight still, remembering teens continue to gain weight normally into their 20's. Even so she may well be at a weight where her period should start. 

When using progesterone to kick start a period it implies there is adequate oestrogen present already, that is the ovaries are kicking in but not well enough to regularly ovulate. The progesterone is given for 10 days to mimic ovulation and it is usually 2 -3 days after STOPPING the progesterone that a bleed will start. 
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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Psycho_Mom
Hi,
Oh, gosh yes, I missed that. Ditto. Young women need to gain well into their 20's, and it seems that those recovering from RAN often need to be higher than expected weight, and definitely higher than pre-illness weight. Sometimes the pre-illness weight isn't a good indicator, because the sufferer may have actually been restricting at a low-grade level for quite a while. Add five pounds and see if symptoms (like no period) improve. And if they don't, add five more!

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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alexintx
Foodsupport_AUS wrote:
Welcome back. Your D sounds like she is making good progress. Great effort. 
As regards your D's period. You mention that she is around the same weight she was before she got ill. It is possible she needs to be at a higher weight still, remembering teens continue to gain weight normally into their 20's. Even so she may well be at a weight where her period should start. 

When using progesterone to kick start a period it implies there is adequate oestrogen present already, that is the ovaries are kicking in but not well enough to regularly ovulate. The progesterone is given for 10 days to mimic ovulation and it is usually 2 -3 days after STOPPING the progesterone that a bleed will start. 


Thank you! That helps. The doctor said that her period might start quickly and she needed to take at least 5 pills, so I assumed that would happen. Hopefully it's still to come. [smile]
17yo daughter diagnosed RAN 8/15 after about 5 months of restriction. WR 11/15. Focusing now on intuitive eating and managing anxiety. Hanging onto the roller coaster for dear life!
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alexintx
Psycho_Mom wrote:
Hi,
Oh, gosh yes, I missed that. Ditto. Young women need to gain well into their 20's, and it seems that those recovering from RAN often need to be higher than expected weight, and definitely higher than pre-illness weight. Sometimes the pre-illness weight isn't a good indicator, because the sufferer may have actually been restricting at a low-grade level for quite a while. Add five pounds and see if symptoms (like no period) improve. And if they don't, add five more!

best wishes,


Yes, that's kind of what the doctor and I have been discussing. She is exactly at 50% height for weight, which is her historic curve. But she has been exercising more and has more muscle, so she might need more weight/fat. She hasn't cut back any calories since reaching her initial WR weight, so I expect she might still slowly gain.

Thank you for your other post about your daughter! How wonderful that she is well enough to go out of the country with her school group! The only reason why we are considering this is because she would be staying in a house with a close family member. She certainly hasn't been in recovery long enough to do what your daughter is doing. One day! She does do well managing her own food and has done it for 24 hour stretches several times while maintaining/gaining. She hasn't done any longer stretches. She has been wanting to go on a backpacking weekend with a group she belongs to, but I haven't let her. It just seems like it would be so hard right meet her caloric needs without a kitchen! But maybe that would be a good next step...
17yo daughter diagnosed RAN 8/15 after about 5 months of restriction. WR 11/15. Focusing now on intuitive eating and managing anxiety. Hanging onto the roller coaster for dear life!
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Doitagain
Well done to you both - what an amazing job you've done and your D's self-talk is just brilliant. I haven't read all the replies here but in the trip, I think maybe I'd wait a year and start smaller and with shorter trips to build and consolidate the work you've all done and consolidate a bit. It's great that she feels it's risky herself - perhaps congratulate her hugely on her great instincts,self-awareness and wise choices. She probably feels she should want to go, which is not the same as wanting to go. I know my D is doing some things this year, that like yours,,she was very nervous about last year. She sees one year in that she is better positioned now than then and we build her esteem by telling her that SHE made the right decision by taking her time and not rushing (and it's still not worry free now!). These things as you know are all part of the slow recovery process and in their own way almost as hard as referring because we have to wait SO long for full healing. But...as long as we move forward inch by inch, as your D seems to be, we see its eventually HUGE progress. Good luck and well done !
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Trytrytry
Sounds like the dr is doing a progesterone withdrawal to start period - take progesterone for the prescribed time and her period SHOULD happen within a week of stopping the progesterone pills.

Google progesterone withdrawal if you want more info.
I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
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alexintx
Doitagain wrote:
She probably feels she should want to go, which is not the same as wanting to go.


Yes, you're exactly right about that. Thank you for the reply and encouragement!
17yo daughter diagnosed RAN 8/15 after about 5 months of restriction. WR 11/15. Focusing now on intuitive eating and managing anxiety. Hanging onto the roller coaster for dear life!
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alexintx
She started her period on day 9 of progesterone. Yay! Now we just have to see if she can get it on her own in the future!
17yo daughter diagnosed RAN 8/15 after about 5 months of restriction. WR 11/15. Focusing now on intuitive eating and managing anxiety. Hanging onto the roller coaster for dear life!
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