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Playball40

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Posts: 269
Reply with quote  #1 
I feel badly that I haven't been around too much, but I think I just wanted a mental vacation from ED for a bit.  Plus, I feel like I always post the same ol same ol and nothing really 'changes'. 

My daughter is now 5 ft 1/2 inches and weighs 106.6 (for those that don't know, we started on this road in December 2014 (almost 4 years) and she was 4'9 and 54 lbs (she was 11)).

She still eats what we give her, she eats junk food and whipped cream and MEAT but still will not plate her own food.  She will order things at restaurants that are decent (she's not allowed to order kid's meals anymore) and will typically eat all or most of her food.  Sometimes she'll eat dessert when out but still won't 'ask' for seconds or dessert. 

She still does not eat well at school, if at all.  She says she tries but just doesn't seem to finish.  School is still her biggest stressor/anxiety inducer and I still don't know why.  She joined theater this year but has yet to actually have the courage to get on stage.  She loves theater though.

She still says she a boy and prefers to dress as such but really seems to only 'enforce' this with me.  In other words she gets angry if I don't refer to her as my son or he.....but doesn't seem bothered when anyone else refers to her as she (her Dad, sisters, twin brother...).  I've stopped worrying about it either way anymore.  If it's just a phase, she'll outgrow it.  If she's truly a boy, we will know soon enough...but until I feel confident that her brain is functioning right (and not eating isn't right) and she is growing properly, I will happily go along as long as she doesn't expect me to give her hormones or anything like that. 

She makes friends really easily again (except at school).  We go to Comic Cons and Mega Cons often and inevitably she leaves with multiple new Instragram contacts/friends.  So, for someone so shy and introverted, she seems magnetic when it comes to people liking her. 

So far no weight loss, even with the intermittent lunches.  She is still steadily gaining about 1-2 pounds a month and just turned 14 in September.  It's hard to determine if her periods are 'regular' because 1)she hides it sometimes and 2) she started so late (just under a year) so periods are often irregular for the first year.  I did notice she gets mad at me about the 'gender' issue whenever she gets her period though.

She doesn't seem so resistant to growing up anymore, which I think is a good step forward.  I'm wondering once she matures a bit more, things will get easier for her when she's away from us.   She seems to know and recognize that we are trying to help save her life where as before she just didn't care. She no longer cares at all about sports or exercise. 

I still fear she's just right there at the finish line, but I can't seem to push her across.  It scares me because I worry she can slip back so easily. 

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Caroline
tina72

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Posts: 245
Reply with quote  #2 
Hi playball 40,
just wanted to say a warm welcom to you, even when I can´t help with these gender issues. But I think there will be someone here who knows what you are dealing with. Did you really want to sign with your name? You can change that if you want and hide it.
Plating their own food is a big step for some patients. Mine is WR for 3 months now and doesn´t want to do it for lunch, but is plating her dinner and breakfast. Wait a bit and try again. It will come by time. Maybe its too early right now.
There are so many kids with this school anxiety thing here (ours too), I don´t know what that is. Seem that they cannot stand any stress. I hope that gets better by time and weight recovery.
Great job that she is steadily gaining weight even by growing! Congratulation!
Tina72
toothfairy

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Reply with quote  #3 
Hi Caroline, is she truly WR?

can you add butter and cream , ground nuts, canola oil to everything?

Have you seen this?

__________________
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.
Playball40

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Posts: 269
Reply with quote  #4 
Hey TF - No, I don't believe she's WR at all - clearly chasing growth.  I always feel like the closer we get the farther the finish line becomes (but I also know that's normal given the age).  It's just so easy to get complacent and act as if this is just the 'new normal' for her.  It isn't.  It shouldn't.  But it's hard and feels like this is how my entire family thinks.  They make me seem like I'm over reacting as the memory of her hospitalization fades.

BTW - that should read three year mark not four year.  I just cannot add, obviously!  She just turned 14 so it's been 3 years.

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Caroline
Playball40

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Reply with quote  #5 
I guess that's a good question.  My 15yo actually asked me what evidence I had that 'forcing' her sister to gain more weight will ultimately help reduce her anxiety and hopefully send anorexia into a memory.  She said that 'obviously' my constant hovering and 'forcing her to eat more' is raising her stress levels!  Please understand, my 15yo is at a point of challenging everything I say and do but she has so much influence over her 14yo sister, that it's scary to think she's filling her head with this nonsense and effectively 'enabling anorexia'.

How do I teach her siblings that this disease is still present, still serious and that we need to be as diligent as we were in the beginning???

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Caroline
sk8r31

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Reply with quote  #6 
First of all playball40, huge kudos to you for all the heroic parenting you've done to move your d firmly towards full recovery.  It is a marathon, that's for sure, and you are still chasing growth.  

Your family's and your d's journey sounds somewhat similar to another forum member, momon, whose d's onset of illness at age 10 is similar to your d.  I think her d also experienced some gender identity questioning when in the throes of ED. 

You may find it helpful to look through her posts; it has taken quite some time to get rid of the ED behaviors, but things are going very well for their family.  It just might give you some insight into the length of time needed for recovery, and how that has played out for them.

My d was 14 at dx, and we didn't find good evidence-based care for 3 years.  Once on board with good professionals, and having gained skills and tools at UCSD's 5 Day Family Intensive, we never looked back.
 
I wonder if your 15 yo d would benefit from reading Carrie Arnold's Decoding Anorexia?  It is a science-y read, but for someone questioning the need for WR, and for wanting to delve deeper into the research, it might prove helpful.  It really would be great not to have her questioning your authority as regards helping your d with an ED.

Sending strength & support,
sk8r31



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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
toothfairy

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Reply with quote  #7 
Hi Caroline,
Re the chasing growth, all I can say is that for us, when I got mega cals into him , he made a quick turnaround...but he needed about 4000 cals a day plus...and still does in strong recovery... Getting his weight right up was a game changer...

Re the sibling...would it help to re-frame there...

I consider this illness to be like dealing with cancer. So to keep the kid in remission he has to have xyz.....there is no negotiation on that with any family member, being told what to do by a minor and undermining you is an issue...IMHO.

I would show the 15 year old the video with Dr Peebles above, its long but explains why higher weights are necess for some......

__________________
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.
toothfairy

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Reply with quote  #8 
I would also show this...

https://en.wikipedia.org/wiki/Janet_Treasure







__________________
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.
toothfairy

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Posts: 1,566
Reply with quote  #9 
Is there any way your family could do the UCSD one week family intensive


http://eatingdisorders.ucsd.edu/treatment/oneweek-intensive-treatment-programs.html

__________________
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.
Mamaroo

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Posts: 156
Reply with quote  #10 
Hi, regarding siblings, I just told d's sister, that we need d to recover as quickly as possible with no ED behaviours left over, otherwise relapse is possible and if her father and I were old or gone, then it's going to become her problem......
__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. Challenging fear foods and behaviours now.
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