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maturemom

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Reply with quote  #1 
Hello,

My daughter was diagnosed with a non specific eating disorder back in late January 2017. Here is a bit of background.

She was 14 yrs old and weighed 154 pound ( 70 kilos ). She is 5 foot five inches ( 165.1 cm ). She was technically overweight according to her BMI and asked if she could lose some weight. She was very insecure and self conscious of her weight. I agreed that she could lose 10 pounds ( 5 kilos ). So it was very slow weight loss. She reached her goal but I noticed she was losing more. I also noticed she was not really eating much and exercising longer. So in late January 2017, I had her weigh in front of me and she was down to 125 pounds (57 kilos ). I also found out she did not get her period in January ( she still had period in December ). I immediately began supervising her food intake and stopped all exercise. I managed to get her to gain a couple of pounds but then found out she was hiding food in her room.

I took her to a GP, who would only dx non specific eating disorder because she was not below a healthy BMI. Anyway, her heart, BP, blood all normal. She did refer us to a dietician and therapist along with weekly visits to the GP.

She very slowly started to gain weight. Partly because the dietician wanted her to gain only one pound ( 500 grams ) a week. So every week we would go the dietican and if she hadn't gained, she would add 200 more calories to her mealplan. We had some fights but pretty much she accepted that since her period had stopped she needed to gain weight. So, through Jan, Feb and March, she gained 9 pound ( 4 kilos ) and now weighs 134 pounds ( 61 kilos ). She is 15 yrs old now. She reached this weight on March 24th and has a BMI of 22. 

It is now June and still no period. The dietican wants her to gain more weight but her GP says she does not need too and that it will come back in time. But its been two full months at BMi of 22. She is medium frame.

She eats a very balanced diet with full fat ice cream, avocado, nuts, red meat, grains, carbs....eats very well h plenty of fats and carbs.

I still will not let her do any exercise other than a 15 minute walk to school and on Sat and Sun, she does a 30 min walk with me so I know its not too intense. She does have some stress with school. Her friends are good. We do fun things as a family. No boys in her life.

She got her period when she was 12 and was very regular with 28 day cycle. No PMS or problems. Also, there has not been any evidence of purging or laxative use. I still monitor her very closely.

Can anyone advise as to what is going on?
OneToughMomma

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Reply with quote  #2 
Welcome maturemom,

It sounds like you have done a good job noticing your d's illness and restricting her exercise.  Many parents would not worry when you did.  Also you were lucky to find a GP who acknowledged a problem with a BMI that wasn't *very* low.

As to why she doesn't yet have her period, no one on the internet can tell you that.  But we can have a guess and give you something to think about or investigate.

Most of us here have found that for recovery our kids needed to go to their original weight and then higher.  Also, young women need to gain weight until they hit their mid-twenties.  Sexual maturity won't happen and continue without a bit more weight each year.  Each body has a set point for health, and I suspect your d's might be around where she was before she became ill.  

Another consideration is her behaviour.  Does she seem disordered still?  Eating freely?  Distressed if not allowed to exercise? Back to her old self?   Concerned about weight?  My d said afterwards that as she gained weight she oddly felt slimmer.  Their brains need full nutrition in order to heal. 

Your dietician seems to be on the right track.  If she were my girl I would feed her well and have her gain until she got her period. And then I would continue to monitor until she moved out of home. If you keep her at her lowest possible healthy weight she will have no reserve in case of illness or rapid growth (and many girls who've restricted do grow after full nutrition is restored despite age--mine grew at 17.).  

My experience of having a girl with non-specific ED is that we could get her weight up relatively easily, much like you have.  But then she would become ill again as she grew and matured but failed to gain appropriate weight.  I wish I could do it again and keep her weight up as high as possible.  Maybe then things wouldn't have fallen apart for her at 16.

Sending you strength and a big cyber hug.

xoOTM

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

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Reply with quote  #3 
Hello, thanks for that.

While I am grateful to have caught the weight loss earlier than most, I am in no way thinking we are out of the woods. While she is better, she still has ED behaviours. For example:

1. If dinner is not ready by 6pm, she starts pacing the kitchen.
2. She still thinks about her meals and if going out with friends, frets about what she is going to eat.
3. She will eat anything I give her for dinner and I mean anything and as much as I give her. Cleans her plate, not one morsal left. 
4. She eats 6 to 8 apples a day.
5. Some days refuses to talk about food, other days talks non stop about food.

She definitely is not recovered. All that we have done is get her to a healthier weight. I have no problem her going to her original weight. The dietitician is a bit of a problem though. She told my D on her second visit that she would help her get to a healthy weight and when my daughter started crying that she did not want to weigh 154 pounds again, the dietician assured her that with her help, she wouldn't allow that to happen. The dietician seems surprised every visit when she doesn't have a period. So she now has said, lets gain a couple more pounds.....

Its so frustrating with different medical opinions. BTW, we did see a therapist but it didn't click. We are now seeing a new therapist but not for two more weeks. My D definitely has anxiety and we are working on ways to cope with it.

Foodsupport_AUS

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Reply with quote  #4 
Welcome to the forum, what a great job you have done getting on to things quickly, and getting D's weight up. 

It sounds like there are a few things happening with your D. 

Firstly she clearly has some disordered eating behaviours. The large amount of apples she eats per day is of concern as is some of her behaviour around food. That makes me think her brain is still getting the message she is starving and she is trying to still control this.

The second thing is her lack of periods. I work in women's health. The time for return of periods after the cessation of all restriction behaviours varies, it can be as short as a month but it can also take three to six months for periods to return. The balance is a very individual one. Assessment of ovarian function and likelihood of return of menses can be done by looking at things like oestradiol levels, ovarian ultrasound and looking at gonadotrophin, and thyroid hormone levels. Even if it looks like periods are about to start it can take a while for them to get going. 

We can't tell you what your D should weigh. Her behaviour suggests she probably should weigh more than she does though, when that will result in periods though is very variable. 

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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.
maturemom

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Reply with quote  #5 
Hello Food Support AUS and thank you for your reply.

I am an American living in Australia hence the pounds and kilos. 

Yes, I also feel that she is still hungry with the amount of apples and dinner obsession. I so want her just to eat freely but realise this is an uphill battle. She eats more on the weekends than weekdays which is also a big concern for me. The reason I caught her weight loss and behaviours so early is that I went through my own eating disorder episode when I was 18/19 yrs old in my first year of college. It was very brief but I lost too much weight and when I gained it all back,had a 3 month binge/purge episode. I know all of the tricks and signs so I was super aware. I will say, one day I just sort of "woke up" and stopped all of it. But I was 19 not 15 like my daughter. 

We see D's GP on Monday since I need a new mental health plan for the new therapist. I might see if she is willing to test estradial and the other levels you suggested. I am a bit obsessed with her getting her period and trying not to let her see that. 

This forum is so helpful. Thank you.
mamabear

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Reply with quote  #6 
Hi there.

I know every case is different. Obviously teens have different builds.

My daughter got sick at 10. She just turned 17.

We saw really significant brain changes/and ED vanquishing when my five foot nearly 4 inch daughter a BMI of 23,25, and now close to 25. She is around 143 now.

Myself- when I had orthorexia in my early 30s, I was FIT and counting cals and fats etc and at five feet 8 inches and 157 pounds I was close to a 25 BMI and had to work out 2 hours a day, 6 days a week and stay below 1800 cals to maintain. It was not sustainable. I am NOT meant to weigh that. My body is healthy and at its best at a higher weight.

BMI is a crappy crappy thing to go by.
Go by her STATE.
I say get her weight up a bit.
Stop the 8 apples a day.
She can have an apple with peanut butter or Nutella.

Great job. I am super impressed with how fast you got on this and your knowledge!

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Persistent, consistent vigilance!
AUSSIEedfamily

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Reply with quote  #7 
Dear maturemom,

mamabear stole my thunder

BMI is a crappy crappy thing to go by.
Go by her STATE.

I wont go into my typical passionate discussion on BMI other that to say "mamabear" is right.

One of the psychiatrists at a large public (government) hospital in Peth Western Australia has had to admit into hospital medically compromised patients (about to die) that had a BMI of 24!! Please go with he state not weight!! It make take a susstained amount of time at a healthy state for her periods to return. I know our D took nearly a year for hers to normalise.

Apples are a kind of laxative I know I love them & often eat as much as your D & when I eat that many I experience a clean out!! So I would agree with mamabear stop the apples, if you cant stop then no more than 2!


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toothfairy

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Reply with quote  #8 
I would push up her weight,
I love this video by Prof Janet Treasure

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
maturemom

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Reply with quote  #9 
Hello, just wanted to post an update to my post.

My 15 yr old D got her period a week ago! And it has been a full five day period like she always had. She may have gained a pound or two more since this posting.

Interesting her GP told me that she believes that for every month they go without a period, it takes the same amount of months at an ideal body weight for the period to come back. So my daughter lost her period for 3 months ( jan, feb march ) reached IBW at the end of March and maintained ( apr, may, june ) and got it last week, first week of July. Interesting that we also stopped talking about her period and sort of relaxed our conversations about ED.

We have gone to weigh ins every two weeks instead of every week. When do you go to monthly weigh in's? or do we weigh forever? or until they are on their own? We no longer see the dietician. We see her GP monthly now.

I know getting one period doesn't mean much, but this is a milestone for us. We want regular periods on going and I do believe as many have stated that her weight needs to continue to go up through her teens and twenties.

She seemed really happy the day she got it but now a week later, not so sure. We start a new therapist next week, a local one, as we were driving over an hour to see a therapist that we did not click with although she had 5 sessions with her. I want her to find a therapist she likes/respects as she still has issues and I believe suffers anxiety/body image and is quite self conscious. I know how important therapy is so that she can have strategies to handle stress instead of resorting to restriction. I also understand that relapse is very high with this disease. 

Sotired

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Reply with quote  #10 
Hi maturemum,
I'm sort of curious who would tell your d she was overweight in the first place.the reason I'm curious is because I'm 165cm, a moderate build and for me,70kg is my low end weight-very low end.when I weighed 68kg I was well on the way to falling down the rabbit hole of anorexia myself.im built to carry muscle and ideally my own goal would never be less than 72-73kg.less than that and my brain goes ed like.
My doctor doesn't truly understand it,but that's not a big deal to me.we all come in different shapes and sizes and I worry that doctors don't understand that.im a trim nz size 12 at that wright by the way.at 57kg, my brain would have been full on anorexic-I know that now.at the time I didn't truly understand what was happening-the more weight I lost,the unhappier and meaner I was,but I couldn't see it for a while.i was in my mid twenties when I went through that.i still don't know how I truly managed to pull out of it-but I can tell you that my dietitian at that time didn't see anything wrong with what was going on.
Just-don't trust any health professionals too much-many of them have their own issues around food.
Anyway,yay for periods eh!hopefully as your d gets back to her normal weight the behaviours decrease. Once I got back to my natural weight I was a much happier,more pleasant person to be around-no matter what those damn guidelines said.

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Foodsupport_AUS

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Reply with quote  #11 
It is great that she has got her period back. Often it just seems to click in from there. On the other hand how is her mood and eating? Is there still the obsession about apples?
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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.
tina72

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Reply with quote  #12 
Congratulations that she has her period again!!!
When my d got it again she phoned me up immediately and we were both crying because of happiness.
Don´t get afraid if it stops again. My d had it 3 times quite normal and than it was late about 2 weeks and I thought it will stop again. But it came back. It takes some time to be normal again. Just be patiently.
Tina72
maturemom

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Reply with quote  #13 
Yes, she ran into my room in the morning so excited to tell me she got it! we did a little happy dance for a few minutes! she kept saying, ' now i am normal, a regular teenage girl'.

i will say she seemed to be her most normal happiest moods the two weeks before she got it. And i had stopped talking about it all the time and sort of said, let go and let god (even though I am not that religious...) She was on school holidays so we were doing many different fun activities.

i should note that the apples were very early in her refeeding and we only allowed her a couple of apples a day. She pretty much eats everything and is exercising a little. BUT she is going to start with the new therapist next week as i know this is an on going battle and one i have to stay on top of and she does too..
aboncosk

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Reply with quote  #14 
That is great news and I am sure you are feeling relieved!  For our d - it was almost 17 months without her period (December 2015 and right before our AN diagnosis and 30 pound weight loss over a years time).  After 4 months of refeeding, she has finally returned to the low end of being back on her growth curve and the period returned this past June 2017 and again two weeks ago.  We have paid much attention to refeeding and seeing first hand how it affects the healing of the brain.  Although our d was at first upset about the return of the period (bloating, heightened body image issues), the second month was not as bad.  I am hoping for many once the period returns that that is another victory on this long recovery road.  I know it has been in our family.  We see less ED behaviors and more of our daughter's personality and ability to make decisions return without the influence of the eating disorder.

Keep doing what you're doing!  It sounds like you are on the right track [smile]



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