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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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kassie
I am new to FEAST but soooo glad i "stumbled" across it last week, we have a
12 yo d with ASD and AN.  Diagnosed in December and caught it early after only a couple of months but it is amazing to me how fast it digs its claws in. Getting an education I would never wish on my worst enemy.  She is  currently IP refeeding after relapse and hopefully to be discharged this weekend if HR will just go up.  This is her only hospitalization.

MDs here want her to go to residential program after here but have not found any that can/will deal with ASD also---high functioning Aspbergers---  

her ED therapist highly disagrees with residential program (for many reasons) as do we especially since over empathizing with a friend who kept saying she had ED is how she slid down this path in the first place.  My d wanted to keep her friend "company" and be a "true" friend since my d feels that no one was ever her "true" friend.
Anyway......................

MDs IP keep forgetting about the ASD component and seem annoyed when we bring it up.  They have said themselves that treatment centers around us aren't equipped for ASD and AN both.

we want to bring her home and refeed again---did it once FBT and are ready for next round emotionally. ( I am expecting a battle with the MDs but not sure since they are really pushing residential.)

That being said....... I did find a 3 day/week OP program with Veritas.  I am still fuzzy about rules with asking about specific places so forgive me if I shouldn't mention names.
On paper it seems like it could be good and they offer tours which seems like a plus.

We have only been at this since December and still trying to navigate everything.

Any help appreciated on both ASD issue and next step from IP

PS  She is supposed to start a summer school program so she can do advanced math next year--she has been working toward this all year and qualified.  It starts July 5, so we figure we can use as leverage for continued refeeding and WR

Thank you for this community- I no longer feel alone and that has helped tremendously.


glad I'm not alone in this
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Torie
kassie wrote:
I did find a 3 day/week OP program with Veritas.  

 
Hi Kassie - Veritas has a top-notch reputation for dealing with AN. I bet someone else can comment regarding the ASD aspect - I have no information about that piece.  Might be worthwhile to call and ask them how they address that.

Please keep us posted. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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sk8r31
Hi Kassie,

Welcome to the forum; hope you find the support and info that can help to inform your decisions and next steps.

Learning about EDs really IS the education that none of us wish we had to acquire....but as I'm sure you are aware, knowledge IS power.

Great that you've been successful at refeeding in the past, and understand and are prepared for the tough stuff to come.

I have a really good friend whose d was diagnosed with ASD after they'd finished refeeding, and the theraputic support they've received has helped a lot, and so far, no relapses.

I think you should follow your instincts on this; if your ED therapist is not recommending residential or IOP, and you feel you can manage at home, perhaps that is what your Plan A should be.  Always good to have a Plan B, and a Plan C or D as well in your back pocket.

Our family chose to go to the UCSD 5 Day Multi-Family program, which was not what our MD or d's therapist or RD recommended.  H and I toured the facility that was recommended & concluded it would not be suitable.  I did a ton of research and reached out to other parents, and after speaking with intake therapists decided on UCSD.  We then went to our d's MD to ask if she would support our choice, and she agreed.  Went to d's T who said "FBT will never work for your family" and that was our last appt with her...also stopped the RD, found a new team 90 miles away that was evidence-based & had FBT training....and we were off!  Haven't looked back...

My point is that you have to figure out the best next steps for your d and your family; MDs at the hospital may not know what options exist or are best for your d.  We also had a Plan B, if UCSD didn't pan out.

All the best to you,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Torie
sk8r31 wrote:
I think you should follow your instincts on this; if your ED therapist is not recommending residential or IOP, and you feel you can manage at home, perhaps that is what your Plan A should be.  Always good to have a Plan B, and a Plan C or D as well in your back pocket.


Agree. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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kassie
Thank you both!
I really like the UCSD family program.

Another question.
Can the doctors refuse to let her be discharged
glad I'm not alone in this
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Psycho_Mom
Hi and Welcome,

FBT does have the best recovery rates by far for adolescent sufferers of anorexia. That is not to say it is the best way for everyone or every family. But if you have done it before and are prepared to do it again, and have learned from whatever went wrong the first time, and your d is medically stable to come home, it seems like it might be the best option. 

And yes, you are the parents of a twelve year old, so you get to decide what the best option is. 

But is she medically stable, first? What's her hr and orthostatic hr, and is she eating in hospital or does she have ng tube? If you're worried the doctors won't release her, perhaps she isn't medically stable enough at the moment to go home, and it would be best to wait until she is? But if she is medically stable, I don't think they can keep her just because they don't agree with your choice of FBT. Doctors provide medical advice, but you're the parent. If you search for mamabear's posts, or for her story of hope, you'll see she brought her daughter home against medical advice and refed her.

There's a wealth of information on this site, on the Learning Center and the Hall of Fame page, the Magic Plate page, as well has how to determine target weight, how to hand back food choices to the sufferer while still maintaining weight (ie how to avoid relapse). If you haven't already, the best books to read are How to Help you Teen beat and Eating Disorder by Lock and LeGrange and Decoding Anorexia by Carrie Arnold. If you decide to bring her home (and you will, now or later) information is your absolute best tool.

Feel free to ask lots of questions, and again Welcome!!
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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Torie
kassie wrote:
Can the doctors refuse to let her be discharged


It depends. 

As PsychoMom said, of course you'll want to make sure she's medically stable before bringing her home. At least in some states, if you try to discharge her Against Medical Advice (AMA), they can try to take her into protective custody if they feel that would be unsafe.

I'm unsure what her regular pediatrician's role in this is. One thing that can make for a smoother transition in some cases is to have your d transferred to a hospital where her regular pediatrician "has privileges" (is allowed to practice there). Then that pediatrician can discharge her whenever the ped sees fit. I'm not sure if that might be an option for you or not.

Hang in there. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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deenl
Hi Kassie,

You sound like you are doing a great job in exploring all options to find the best fit for your d. When our son was really, really ill he showed so many signs of ASD that the psychiatrist told him so even though as I said  you don't develop it at 12 (I had investigated it before and I am quite comfortable that he is not)

I do however understand why it crossed their minds; he is very intelligent, highly sensitive esp. visually and aurally, he prefers predictability, attentive to details (although he holds the big picture in mind too), few friends (because he is not into typical tweenage stuff!) etc. But he does not exhibit difficulty with empathy and shows deep insight in social situations. He is also not very literal in for example his vocabulary, use of idioms and analogy etc.

There was a lot of discussion and argument within our team as to whether to keep him IP or let him come home. We were fighting legally to have him home.

Once home we did all the things he needed to feel safe; predictable environment, calm, strong routines esp around food and things to occupy his time. I am sure you would be able to provide these for your d and most likely better than any IP facility. There is great peace to be found in a familiar place with familiar people.

I think the biggest issue is of course how much you can get her to eat and the plans you have in  place if it doesn't go well. I found it was soothing to me to have these agreed in advance with the doctors etc. That calmness fed through to how I dealt with my S.

Wishing you success with whichever path you choose.

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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iHateED
Just want to say Hi and welcome to the group that no one wants to join.... but so glad you found us here.  Lot's of shared wisdom which can really help you make decisions for your own situation.   It sounds like you are ready and willing to do FBT at home.   Our family attended the one week multi family intensive at UCSD and it was so helpful for getting on the same page and understanding what works for our family.  The best thing about the program is leaving with a contract for recovery.   You work on your contract towards the end of the week.  Our contract really laid out the plan for eating and what would happen if our D didn't eat.   UCSD was our Plan A, and if that didn't work then we would move to Plan B which would have been residential.  Thankfully we never needed it!     Sending you strength as you figure out your next steps.

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kassie
We were now rethinking taking her straight home now. and been doing ALOT of research.
So glad for you guys
Today is day 8 of IP. My d's night time HR up to 40s now. Eating all her meals and getting over night feeds too. Per the hospitals protocol
She was still eating before this relapse --- sooooo scary how quickly went down hill and how hard the climb back up is.
We have been having a sneaking suspicion that our d is just cooperating to get home.
This morning she admitted to me that she made a deal with ED. That he would go on a vacation and she would eat to get out of the hospital.
I assume this is not uncommon
In March she wanted sincerely to be totally done with this and was ready to get better. Now she says she is not sure if she wants to get rid of ED.
But, I guess not sure is better than not wanting to at all ??????
She says she wants to go somewhere residential so she can talk to other girls. On one hand that scares me since we keep hearing about how they can come out better anorexics and on the other hand I'd like to think it means she wants to get better.

If someone is done with their crystal ball, can I borrow it lol
I am amazed at how this illness can turn me from someone who was decisive into someone who can't seem to make any decisions at all

Luckily, the case manager understands the autistic component. (She was diagnosed ASD in second grade)

In a weird way I am almost thankful she will still be in over the weekend so we have more time to research and figure this all out.

Any/ all wisdom is appreciated.

Thanks for listening

K
glad I'm not alone in this
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happiness
Hi kassie,

when I read your post, what first comes into my mind is that YOU need to be in charge. You can not show any signs of weakness. You  need to make all the decisions and show the ED that you will not give up the fight and that you will not make ANY compromise. That's how we got through the initial referring phase, which was probably the hardest thing I have ever done. 
Not being decisive is not an option. You have no other choice but to be firm and strict and never give in!

If someone would have told me that initially, I think it would have really helped me so I hope that my words help you be strong at get your child better.


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kassie
It actually does help. I think I needed the reminder
Thanks
K
glad I'm not alone in this
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Torie
kassie wrote:
In a weird way I am almost thankful she will still be in over the weekend so we have more time to research and figure this all out.
 

Is there a possibility she could stay put for another week? It sounds like they're doing a great job getting the calories in, and sometimes a few more pounds makes a huge difference in mental state. Or, is it an option that you take her home and if she refuses a meal, they take her back?  It really helps if she knows that she can eat here or she can eat there, but in any case, she WILL eat.

I agree with happiness that it's really important not to show any signs of weakness, even if your heart is pounding and your knees are shaking. She needs to see that you are smarter, stronger, and more determined than Ed.

Many here have spoken highly of the UCSD family week. Seems like that might be a great fit for you.

Keep swimming. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Colleen
kassie wrote:

We have been having a sneaking suspicion that our d is just cooperating to get home. This morning she admitted to me that she made a deal with ED. That he would go on a vacation and she would eat to get out of the hospital. I assume this is not uncommon In March she wanted sincerely to be totally done with this and was ready to get better. Now she says she is not sure if she wants to get rid of ED. But, I guess not sure is better than not wanting to at all ??????


Hi kassie,

Just wanted to let you know that at this early stage, it doesn't matter whether your d wants to get better or not.  It doesn't matter if her motivation to eat is to get out of the hospital.  If your plan is 100% resolved that she will receive 100% of the nutrition she needs, that's all that matters now.

If you take her home from the hospital and she refuses to eat after you have tried all the tactics parents here have suggested, can you take her straight back to the hospital?  I would have this serious conversation with People Who Matter at your hospital before I took my d home if I were you.  That way, you can honestly say to her at home:  "You can eat here or you can eat at the hospital.  I'd like you to stay here with me, where I'm going to feed you the food you liked before you got sick, and where you can be with your sibs and friends and pets and have your own stuff around you, but if eating is too hard here, we're going to the hospital because eating is the most important thing right now."  But you'd better be sure that the hospital will actually take her back!  ED might call your bluff on that!

Good for you for educating yourself!  That's the key, really!!
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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kassie
We are now coming up on day 14 in hospital and now orthostatic HR finally just a few points away from each other and overnight HR almost 50.  D still says she was fine and nit sick.  several MDs have told her that her heart could have stopped at any time and still refusing to believe --I understand that is common.  She still thinks she is going to stop eating as soon as she gets out.  I have been watching her in shower as she is trying to exercise there,  She has a sitter 24/7 and i am here too but still trys.

My hubby and i are trying to get her into PHP so we can have full "control" overnight as I know my D and totally know she will exercise as much as possible in a residential facility as I assume they don't have sitters in each room.

I thank all of you strong people out there as I read different threads the theme is always that we parents are in control ED is not and I soooo needed to hear that REPEATEDLY.

We feel PHP is best option right now as we feel we need the extra back up while WE get stronger. UNC is where we are trying right now but have Kartini in our back pocket if needed.

I need reality check though.   It is June 8th.  July 5th D is supposed to start summer school for 7th grade math so she can do 8th grade math in 7th grade.  she has been working hard ALL year to get to do this and several friends are also.  We are wanting to keep her PHP until then try home with IOP at night and then right after school ends July 30th go to UCSD for intensive family August 1.
I am thinking that we can use math class for leverage at home.  With her Aspbergers she hadn't really had friends but she has found small group of girls that truly like and accept her for who she is--first time in her life.   I want her to have this math opportunity so she will have some classes next year with these girls as I feel the more she feels accepted the less ED may have its claws in her????? Since trying to have a friend got her here in first place according to D

  I feel like i am having hope for the future with this but
 I need to know if i am delusional.

As always, thanks for listening.

K
glad I'm not alone in this
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hopefulmama
kassie - 

I am so sorry for what you are going through.  I can so relate to wanting to offer the advanced math class as a carrot. And for wanting your d to have an opportunity to be with friends. 

My d missed most of her junior and senior years in HS.  She totally isolated from all of her friends and was bullied on social media for her eating disorder. To say that it was awful doesn't begin to tell the story.  My d had always been an elite dancer when ED started.  She had an upcoming show a few months away for her pre-professional dance troupe that she had dreamed of performing in for years. In the early days, we used that as incentive for her to eat. Ultimately though, we had to take her out of the show.  It was heartbreaking. It wasn just the physical aspects of the dancing.  It was the reality that full nutritional restoration had to be the one and only priority.  This process took much longer than I originally thought and was WAY more emotionally draining on my d and our family than I originally thought.

In looking back on those early days, my d and I have both now said in some ways we wish we had known the fight that we were in for. Don't get me wrong, my d is living proof that full and complete recovery from anorexia is possible.  She then went on to rebuild her life and is now attending college out of state and again has lots of friends and meaningful relationships. She has made up for the academic losses that anorexia caused. However, none of that could have happened had we not thrown everything at getting her healthy first and THEN returning her to life.  We even delayed her going to college for a semester to further cement her recovery.  I remember in the high school days wondering when and if my d recovered physically from AN, would she be able to recover academically and socially.  Your situation might be different, but for us, it WAS possible, but not all at the same time.  We had to focus 100% on the ED recovery first.  We also had to let the anorexia know that life stopped until recovery was addressed first.  This was one of the hardest pills for me to swallow.  I did not want my d to miss out on things because of ED.  It just wasn't possible for us. 
Enjoying my 23 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
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Torie
Hi Kassie - 

I understand your desire to help your d manage the summer math, but gosh, July 5th is so soon. How many hours a day is the summer session? She will definitely need your support for each meal and snack at that point.

I understand your desire to use the math experience as a carrot as long as you are clear that eating each meal and snack is the top priority and a necessary condition to be able to attend. (If she isn't well enough to eat her meals and snacks, she isn't well enough to attend I'm sure you;ll make that clear to her.)

Honestly, I'm not sure how much chance there is of that. I wonder if there's another way in to the 8th grade math in 7th grade - do you know? Maybe if she learns enough to pass the final exam for summer session that would be enough? Personally, I'd ask about that but NOT tell D if it turns out that option might exist.

Also, in any case, perhaps you could use visits with these new friends as a carrot in its own right. ("After you finish your meal, you can call/visit/text Friend A.")

Good luck with this challenging transition. It's great that you're researching you options and your backup options for AN support. 

Hang in there. It really does get better. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Trytrytry
I know nothing about your d or much detail re autism but wanting to be around other girls with ed sounds scary to me, especially as she is still only 12.
I saw girls copying tricks, my d came home with so many more sneaky behaviours that she never had.
If you are looking for a facility I would also look for one that has younger patients separated as I imagine with ASD and being so young and immature and your comment about wanting friends so she tried behaving like others to fit in.

In know way give ed what it wants. But by all means have a plan b, c, d.
If she is complying just to get out, that's fine, most do.
You must have done a good job refeeding her before - I imagine if she wants to go anywhere except home, she knows that she can't get away with anything.
The idea of sending her somewhere during the day so you can get a break for the night time shift may have to be a reality, but you know what you are in for.

She just sounds socially fragile to be put in a facility with older, chronic patients.

How does her brain think, would she respond to a physiology textbook that explains that the brain only functions by using lots of calories and that you won't let her go to the maths program if she can't give her brain enough food to allow it to do the complex problems - just a slightly different spin on using it as a carrot. Even though it is only a month away, I don't know what these programs are like, but it is not sport, she will be sitting - if it is over lunch then you would have to supervise but the hours in class sitting might give you a break. Of course she would have to do whatever u decide is fair and doable target to go and then to stay.
I can see all the reasons why not to send her if complying but if it is a class that is small? and the kids are the high achievers that she may be more likely to make friends there that aren't bad ed influences

Only you can decide, I thought there may be some positives in using it as a carrot and letting her go if she does comply, even though it is only 3weeks away.

And you know that doing extra maths at this age makes no difference to her adult life it is good for confidence but kids miss lots of school and still get into great professions.
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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