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gubs60

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Reply with quote  #1 
This is my first post on this forum. My daughter was diagnosed with anorexia in the Spring of 2016. She was at the time a pretty typical 14 year old high schooler who spent 1/2 of her day at a Culinary School (hindsight) The rest of our story is mirrored in so many of the posts on this forum from total lack of knowledge on the part of our very educated pediatrician to an ineffective therapist and nutritionist team (she got worse and worse). Her period ceased and she became very withdrawn. When I decided through research that FBT made sense to me, I found an FBT therapist and away we went. Although my daughter hated going and FBT was shocking and scary, she is currently weight restored., mood good and period returned. My question is this: We technically only made it through Phase 1 (she will not go back and I too believe that the sessions stopped being effective) She now chooses her own breakfast, I make her lunch and we eat dinner together. She chooses her snacks. I weigh her weekly with a contract that if she doesn't stay in the recommended range or skips a period we will begin to give her meals again and no physical activity (soccer). We've had to do that 1 time. She eats welll but still not ltotally like a normal teenager if there is such a thing. She still talks about eating "healthy" but eats a wide range of food willingly. I am wondering if there is a reason not to continue in this manner regarding the fact that we are doing this unsupervised.
mnmomUSA

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Reply with quote  #2 

Don't mess with success.  You are doing pretty well for just a year in.  The one thing I say to everyone at this stage is don't move too fast.  It takes a LOT of time for truly intuitive eating to return.  For a lucky few it's within 12-18 months, but I will say that based on my 4 years here, this is very much the exception but not the rule.  Average probably runs 2.5 to 3 years.  Our case was almost precisely 3 years when the switch truly seemed to flip on.  We spent about a year in the trenches, but then progress stalled.  Not really going backwards, but also  not moving ahead.  We kept plodding along, giving small levels of control back little by little.  

So, I would say you are doing a great job.  If it's working, and she keeps being able to take more and more control, then you are on the right path.  If you stall, there are wonderful options for pushing you over the finish line.

One other thing....since you seem well versed in this stuff, I'm assuming that you are aware that her weight needs to continue to increase each and every year.  So, being in the "same" range is losing ground.  Teens gain weight each and every year until they reach their early 20's.  Our ultimate success happened when we pushed a range that seemed ok when we first reached it but then "stalled."  We added 10 pounds to that range, and it made an enormous difference.  I had mistakenly assumed that the range given when she was 13 was still good at 15 or 17.  Not.  :-)


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D, age 17, 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.  :-)
Torie

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Reply with quote  #3 
Welcome, gubs.  Sounds like you and your d are doing really well.  Congrats!!

I agree with mnmom in that it's important not to rush things.  You want your d in the strongest recovery possible when she hits that magic age of 18 (or 17) and prepares to spread her wings - sounds like you have plenty of time, but it will be here before you know it.  So it's prudent to stay vigilant - very vigilant - to try to nip any backslide in the bud.  One step at a time - slow but sure wins the race.

I trust you are aware that you need to take precautions when weighing so that this vile illness has no opportunity to trick you into thinking she weighs more than she does.  So many have been taken by surprise on that.

Please feel free to ask all the questions you like - we're glad you found us. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
toothfairy

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Reply with quote  #4 
Hi there,
Welcome and congratulations on getting this far in such a short time.
So your D is now 15, right.
My advice to you is to plate and semi supervise as many meals as possible until she leaves home.
It takes a very long time to heal the brain.

I have read articles on this by  Prof Janet Treasure and Dr Julie O'Toole AND BOTH advise that you do not hand back control until they are much much later into recovery or leaving home. Pity I just cannot find the articles right now.

Her is a similar one though.
   https://www.kartiniclinic.com/blog/post/16366/

One other thing, a lot our our kids were given recovery bmi targets of around 19, including my son. This is not high enough for many of our kids, and stalls real recovery sometimes.....just thought I would mention it..

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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.
Foodsupport_AUS

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Reply with quote  #5 
Welcome to the forum!
You have done a great job so far. One thing my years on the forum have taught me is that there is no one right way to do this. Traditionally phase one of FBT is re-feeding and is not at all adolescent focused, phase two is handing back control of food so that the young person is eating independently again, while phase three is resolving any issues the young person may have. It is only in phase three that you would necessarily expect D to feel that she was benefiting from her therapy. That is not to say that you need to complete the course, but her lack of "benefit" may be because she has not completed it. 
If things are going well and she is continuing to gain and slowly develop independence in eating then she is doing what she needs to, you can always go back to therapy later if needs be. As others have said though many need more weight than "expected" and ED has a bad habit of lurking in the background presenting as relapse some years down the track so it is essential to stay vigilant. 

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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.
gubs60

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Reply with quote  #6 
Since my last post my daughter has been humming along, eating indepently, both maintaining and gaining and has had 5 consecutive periods. She also asked to see a nutritionist and I obliged with an ED nutritionist. This month she skipped her period (5 days late) although she gained a pound in a 2 week period. My husband and I panicked and tried to repeat our food plating and it was a disaster and we backed off. Through that however we saw exactly how present the eating disorder is despite her independent eating. My question is the following.. She has a VERY good relationship with the nutritionist who makes her believe she deserves and can fully recover. She has her eat challenge foods and tells her to even call her when she's eating them. Is it possible to recover with only the help of this nutritionist or do we have to revert back to plating meals for a better chance of getting rid of this disease..Is more FBT the only route??Any advice would be helpful.. Thank you
toothfairy

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Reply with quote  #7 
Hi
We are about 6 months ahead of you diagnosed in Oct 2015.
Recovery happened when we fired the dietitian & her "bmi 19 is recovered " & her rules...
Then we pushed my kid up ro a bmi of 25 where he is in good recovery ..
Still gaining....
Your D sounds like she needs to be a higher weight.

__________________
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.
Torie

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Reply with quote  #8 
Quote:
Originally Posted by gubs60
My husband and I panicked and tried to repeat our food plating and it was a disaster and we backed off. Through that however we saw exactly how present the eating disorder is despite her independent eating.


I'm sorry - why did you back off?  I'm really confused. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
gubs60

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Reply with quote  #9 
Torie,
We only backed off because we didn't expect her reaction and weren't prepared. It was pretty horrible.
trusttheprocessUSA

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Reply with quote  #10 
My 18 yr old RAN son recently lost 8 lbs right under my nose after being in recovery for 6 years. I knew I had to refeed him. I guess I thought he would be on board and be able to eat without any push back - boy was I wrong. The shock was debilitating. But I kept going and got him back up to his weight. He was so angry for 4 weeks. I had to get comfortable with him being angry. At the same time we have a new solid FBT therapist who just moved to town. She is helping me let
go a bit and helping him learn how to take care of himself and be independent - which is vital.

Even though the ED is right under the surface for your D and her reaction to being refed was scary - as I understand it she must be supported with full nutrition to get better and she can't do it alone she needs you to get her there.

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Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
mjkz

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Reply with quote  #11 
Quote:
Torie,
We only backed off because we didn't expect her reaction and weren't prepared. It was pretty horrible.


One of the best things I read here that really helped me was "don't be afraid of what ED is afraid of!!"  Horrible or not, she still needs guidance and help.  I would meet with the dietitian privately and reinforce with the dietitian that she needs your help and guidance so the dietitian can keep getting that message across to your daughter.  If she can't do that, I'd drop the dietitian to be honest.  I don't know why your daughter asked to see one but it sounds like things have gone in a very different direction since she has seen her (both good and not so good things).  You sound like you were on a very good path before the dietitian!!!

Welcome by the way.
iHateED

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Reply with quote  #12 
Gubs, welcome to the group - though so sorry that you need to be.   This illness stinks on so many levels and it's like playing that game whack-a-mole every day.  My honest opinion is that her ED was and still is very active under the surface.  It seems fine when she is not challenged or pushed but has really shown you how strong it can be.   I agree with mjkz, if you can meet privately with the dietician and get on the same page (she needs more weight gain, you as her parent need more control) then I would say it's ok to keep her.  We personally did not have a good experience with 2 different dieticians, even though they were ED trained.   One did not seem to think weight gain was important when I knew my D needed a few more pounds!   When my D told one of them that she didn't like milk, the dietician said it was OK to drink soy milk.  I was in the room and I tried to say, no, we have always been a milk family and it's just her ED that doesn't want her to have milk.  But once the damage was done it was very hard to regain.  My point is, bad help is worse than no help!  My D was 16, 17 years old when going through refeeding and it was hell for all of us. 

If you are in the US, I highly recommend that you look into the one week family program at UCSD.  During your week there, you develop a contract for eating, weight gain, behaviors, rewards etc.  Anything you want to include is fine.  The contract was so helpful when we returned home and did it on our own.  It laid out clear rules for what and when.   Or perhaps you can work with the new dietician to develop a contract ??

One other point - in your first post you say that you make lunch -- but who watches her eat it?  Not to scare you but if you don't see your D actually eat the food, you can assume it did not get eaten.  It took me a while to really understand this, I thought I could trust my D when she told me she ate a meal.  She would tell me she was going out to eat with her friends and then at the restaurant she would tell her friends that she ate with her family so she would just have a water. 

Hang in there [smile]
gubs60

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Reply with quote  #13 
Hello,
Since my last post my daughter has been working with the ED nutritionist, loosely following a meal plan and is at 118 lbs. (her highest weight), BMI 21. She has had her period very regularly for the last 7 months (except 1 month which I believe I referenced in a previous post). I had noticed lately that I felt she had not been eating enough at each meal and she convinced me that I was wrong. She said its summer and because she likes to eats snacks st the pool with her friends she does not eat as much at meals. The thing that is really strange is that she literally faked having her period which was clear that she did get this month. So is it normal that she gained weight, is at her highest weight but missed her period because she was indeed restricting still? What would you recommend? I even took her for a blood test that needed to be done while she was menstruating (I thought she was at that point) that a medical doctor had previously ordered to check her hormones. Hope this is clear. Thank you.
mjkz

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Reply with quote  #14 
I would tell her it was fine to have those snacks but she needs to eat more at meals.  It really sounds like she is still restricting.  Summer or not, it doesn't sound like she is eating enough and faking her period is really a clue that her ED is kicking up again.  I found that the more fat my daughter had in her diet, the more likely she was to have her period and that still holds true.  Every so often I'll notice my daughter is not eating enough fat and it often manifests as her period stops.  Fat seems to still be the thing that she cuts out when she has a blip.
gubs60

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Reply with quote  #15 
Hi all,

Medical ED doctor believes my daughter is "fine" regarding her weight and labs despite the fact that she will miss a complete period even with weight gain. I also cannot ignore ED behaviors and I have inquired about the Center for Balanced Living in Ohio. My thinking is that it may help her and our family understand what she is going through and how we can get best support her and ourselves as well. I'm looking for thoughts about the program from others who may have gone through it it have knowledge about it. I am really torn due to the commitment (travel). I am also not totally convinced that this is for a 16 year old as I believe it began as an adult program. I would REALLY appreciate thoughts. I'm really looking for some hope. FBT worked for us but not much else in terms of therapy or support. Thank you.
EC_Mom

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Reply with quote  #16 
My d faked periods too. Weight and labs are false reassurance, in my view, and not at all the place to start measuring anything. We had moms on here whose kids were in 80th percentile of weight or higher, and near death because the weight wasn't right FOR THEM. 

The clearest standard for determining medical safety is orthostatic blood pressure. But just because a patient has ok blood pressure is no indicator that s/he has enough weight to truly recover from this horrendous illness.

She needs to gain more weight. When she gets closer to where her body needs to be, things will slllllooooowwwwllly improve (and sometimes get worse as she approaches that spot, unfortunately).

I believe I've read good things about CBL, I'm sure others will say more. But your medical ED doctor may need to be fired.
toothfairy

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Reply with quote  #17 
Hi there
This video is brill about weight, periods etc xx


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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.
mjkz

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Reply with quote  #18 
Quote:
Medical ED doctor believes my daughter is "fine" regarding her weight and labs


She may be fine in terms of her labs (we all know labs are not a good indicator of how well someone is) but that doesn't mean that her ED is not alive and well.  She could be a normal weight and still very sick.  The medical doctor has obviously reached the limit of his/her ability to tell how she is doing and is not listening to what you are telling him/her.  Go with your gut.  You can be a normal weight with normal labs and still as sick as ever with ED.
toothfairy

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Reply with quote  #19 
http://www.blog.drsarahravin.com/eating-disorders/10-common-mistakes-in-eating-disorder-treatment/
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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.
gubs60

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Reply with quote  #20 
Thank you for ALL advice and reference materials. Helpful because it helps confirms that I am not the crazy one. So much bad advice from ED "professionals " that makes things very difficult. Going with the gut instinct as a parent is essential I have realized. Just so much bad advice. This forum also confirming the nagging feeling that that she is not as well as they say even though I myself would love to believe that. I think for us CBL in Ohio could be the missing piece and thinking seriously about it.
toothfairy

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Reply with quote  #21 
My advice- she is 15 , act now as it takes a few years to get them into good tecovery, and time is on your side before she reaches 18 & can refuse treatment.
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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.
Torie

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Reply with quote  #22 
Quote:
Originally Posted by toothfairy
My advice- she is 15 , act now as it takes a few years to get them into good tecovery, and time is on your side before she reaches 18 & can refuse treatment.


Yes!!!  I cannot stress this enough.

My d has been at a good weight (well and truly weight restored) for more than THREE YEARS, and it still feels dangerous and scary having her away from home at university "so soon."  Trust me on this: You will want all the time you can get in recovery before she flies the nest.

Thinking of you.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
HateEDwithApassion

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Reply with quote  #23 
Having an 18 almost 19-year old who is bucking us and in a relapse, I also urge you to do whatever your gut is telling you NOW.

The UCSD program also seems to be a very strong one for adolescents - I've heard amazing things about it. And it does more to mimic the situation at home, where your daughter will be with you for the next few years. If it were me, I would find out which of those two are best covered by your insurance or are most do-able financially because they both seem very strong.

Since your daughter is a minor and at home, you can do a lot to set the right environment for recovery, and the 5-day programs seem so valuable for that. 



__________________
17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
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