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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 Her period ceased and she became very withdrawn.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) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
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.

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
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]
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