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

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SamHeinous
Abby is still having a very rough time.  This whole thing just sucks.  She's still inpatient at ERC.  Here's a rough run down of what's going on right now.  Any thoughts, advice, anything... is welcome.

She's weight restored - to 71 pounds, which looks about right on her.  Hard to tell though, I'm SO used to her being super tiny and frail that it almost looks like TOO much.  That's the good news.  

The bad news is, the exercise compulsion is BAD BAD BAD.  She doesn't give a crap about the monitor, or if they catch her exercising.  Does. Not. Care.  They redirect her over and over again, help her with her coping skills, you name it... She doesn't care.  She doesn't care if she loses privileges or not.  She doesn't care if there are consequences.

Christmas Eve, she at 100% at dinner.  My initial reaction was "YAY!" but quickly turned sour because obviously, Abby felt like crap for eating.  Total guilt.  Went into a big tailspin.  

She's on maintenance as far as calories, but they've increased her portion size. (They were adding benecal to stuff and giving her half portions until now).  I'm sure that's part of what's caused this massive anxiety and OCD that's going on, but she just can't seem to come down from it, even with the Klonopin.  She's started refusing the Boost when she doesn't finish a meal.  She just stares at it and shakes.  I'm not sure what's next, I'll be having a conversation with the team tomorrow about it.

I went to visit her Saturday morning, and she just lost it.  She was fine for 5 minutes, and then suddenly wasn't.  Begging to come home, telling me to check her out, that she's too fat to be there.  Laying down and trying to exercise.  We had to end the visit at that point.  Later that afternoon, I tried to visit her again, but she had refused her Boost, and was still highly anxious.  I was able to cuddle with her for about 5 minutes again, and had to go.

I called the nurses this morning and asked how she was, and she was not doing well.  We decided to hold off on visiting for the day, partially because she was just super anxious, and partially because as a consequence of exercising and refusing the Boost, her visiting was restricted.  I don't love that part of this, but honestly, had I seen her, it would have been more of the same I'm sure.  

I'm awaiting a phone call from her now.  I just don't know what to do.  I wanted to think that after 3+ weeks in inpatient care, we'd be further along than this.  I didn't think it would get WORSE.  And it's WORSE.  Way way worse.

So here I am at the RMH, waiting for the phone to ring, and trying not to sob.


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perdido
Ok, deep breath! She is eating and she is back on track weight wise. The exercise compulsion is still there but she is early on. Keep breathing she is in a safe place. I remember early on all I did was cry. It's ok, cry when you need to. It won't last forever. Remember it's still early days.
Slow and steady
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Cherryusa
Sam,

I am sorry her recovery path is not a straighter line. It's huge her weight is at a good point. That's big progress. I'm not be surprised her anxiety is so high,you will all work through it . Is it remotely possible she could be rewarded for eating by spending time with you? Like an outing to the Ron Mac or anywhere around there. I understand if even that is not incentive enough. Its just a thought , and maybe premature. There was a long period of time NOTHING was an incentive for my d and she could of cared less about anyone's rules. Hang in there.
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GiveMeStrength_US
It is a roller coaster ride - one minute fine, next minute hell.  She is in a safe, good place.  They will work with her and you.  They will keep her safe.  She is not alone.  She has support and caring.  You are there to support her and love her.  Try, try not to ride the roller coaster - try to stay on the sidelines and keep some emotional distance.  It is near impossible, I know, but I have found that is the only way to preserve our sanity and our hearts.  There is one book that calls it a wave and tells parents to not ride the wave, but stay on the shore.  Whatever analogy you can find, try to adopt it because it's a long ride and you will only wear yourself out if you get on it.  I'm so sorry this is so hard.  Be patient.
Mom to D 21 in November, behaviors started at 15, hospitalized at 16, IP at 17, FBT at almost 18. Finished second year in college; now abroad in treatment program to deal with co-morbids.
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perdido
Anxiety is part of this disease. They can't help it. It gets better. I think my d was anxious, not exercise compulsion but purging for 6 months. Remember by the time we recognize the disease it is a full blown disease not something we can stop and revere instantly. Try to breath a d rest, I know not something you want to hear. Relax your shoulders, I know they are hunched.
She will come through, but the only way out is through.
Hugs and strength
Slow and steady
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SamHeinous
Roxy,

I suggested that at our last session - that perhaps a pass might be good incentive.  I'm going to bring it back up again when I talk to them tomorrow.  It may be that the reward for eating and not exercising is just too long in coming - she may need that reward immediately - not an hour later when visiting starts.  Though I think she's at that point that you mentioned - where she doesn't care about anyone's rules or any incentive.  

I knew this wouldn't be a straight line, I just didn't think the lows would be so..... low.
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Foodsupport_AUS
It is so hard to see our children suffer through their ED isn't it. Just remember she is no longer in danger of starving to death. She is safe. She is starting to eat. Her thoughts at the moment are trying to make her feel bad for being treated.  They are trying to get her to starve herself again. With time they will lessen, but it may take a while and she needs to be held in check until that happens. 
This part of ED can be so irrational, it is so all consuming that nothing else matters. We just have to remember that it will pass eventually.
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.
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mec
Sam,

I'm so sorry about this. Please hang in there and don't give up hope. Things will get better at some point.

Sending you hugs tonight and best wishes for a new beginning in 2013.
21 year old daughter who was DX with RAN at 9 years old. The work of recovery is ongoing. 
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AnnieK_USA
Your daughter needs time being held at a healthy weight. For many people with anorexia, eating enough food causes huge anxiety - who knows why, that's just the way it is. It will take time for her body/brain to heal from the effects of malnutrition. Her body is in much better shape than it was, and now she has a chance to heal mentally/psychologically, too. She HAS to go through this anxiety, the anxiety that was held at bay while she was restricting. The only way out is through, and you have a wonderful team of clinicians helping her and you and your H to pass through this phase.

I am sending hugs and strength to you across cyber-space! I remember when you first posted here and were at home, paralyzed with fear because of this illness that had hijacked your daughter, and not knowing what to do. You have come so far since then!


Daughter age 28, restrictive anorexia (RAN) age 11-18, then alternating RAN with binge eating disorder and bulimia with laxatives, is in remission from EDs for 3 years after finally finding effective individual therapy. Treatment continues for comorbid disorders of anxiety, ADD and depression. "Perseverance, secret of all triumphs." Victor Hugo
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Bontoplen_USA
I am so sorry for your anguish.While my situation is different I can tell you that the 3 month period of my d not eating at all and then only 500 cals a day was pure hell.She was depressed all the time and several times said she wished she was never born.Other times she cried and begged me to help her,she was so hungry, and I thought I was helping  by giving her food, but she could'nt eat,she wanted to but couldn't.I lost it many times,checking on her at night to see if she was breathing.I would never wish that on anyone.I think ED is worse than any other disease because the cure is food! How simple right? I will never forget one evening we took a walk and she could not even make it halfway around the block,she was tired,exausted,hungry and said she didn't deserve to be happy.I cried so hard when I got home I couldn.t breath.But now we talk about it and she says she is glad I was just there,and she remembers one time when I checked on her when she was sleeping and felt under her nose to make sure she was breathing,she pretended to be asleep but she tells me it made herfeel at ease.So hang in there,she knows you will be there through thick and thin .
Bontoplen
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Colleen

Sam, I think things are going really well!!

She's gained weight--YAY!  She looks like she's gained 'too much' to you, which indicates a good weight gain.  Don't know if anyone has told you this, but after a period of starvation, the body lays down fat around the abdomen.  It helps protect the vital organs in the trunk from hypothermia just in case this famine is not really over.  It's an old caveman body response.  Once she has had a long enough period of full nutrition--and this weight gain is adequate for her--it will all redistribute.  Sometimes practically overnight.  It's impossible to avoid this pudginess--it's distressing for them, but it's a good sign of recovery.

She ate dinner--YAY!  The guilt and remorse they feel after eating is REAL and powerful.  The compulsion to exercise is also powerful.  That she ate is FABULOUS!

It sounds like she has to eat larger portions.  That's huge progress.  I'm sure ED is giving her all kinds of hell, but it's a good step toward normalizing eating again.  The anxiety it provokes is really hard to bear.  ERC will have to gauge how to balance her anxiety vs her refusal to eat at all--that's their job.  I wouldn't let them use YOU as parents as the leverage for this just yet...that's my personal opinion.  Can they make this change more slowly?

Maybe this is something else that you haven't been told:  it gets worse before it gets better.  Three weeks is not very long.  For my girl, three weeks was the worst.  She was suicidal at that point.  Your d has exercise compulsions that are out of control.  The Minn Starvation Study guys were deeply depressed.  Concentration camp survivors in WW2 raged at their American carers.  Eating after starvation is really really awful.

The good news is:  she is three weeks into healing!  Those three weeks are OVER!!  You don't have to live them again.

If we haven't said this a lot recently, we should:  "It's a marathon, not a sprint."  It takes a very long time to heal the brain.  Think months and years.  But it won't always be this bad.  Really really.  You are in the hardest days here and you've got great support.

(((hugs to you and Sirius and Abby)))

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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EB
What Colleen said - it really does take a while. 

Once we start to do the necessary and put things right for the body, our rational parent selves and our optimism and impatience want healing to start (and finish) asap - why would we not?  Unfortunately, what we are typically not so acutely aware of is what is now going on inside of the head of the person recovering.  In place of the hope for recovery, they may feel under threat and are likely to feel much more anxious than before.  It will be a while before they realise that they are in fact approaching a place of safety; there is still a load of hand holding and support needed all round. 

The OCD typically unravels itself over time; the magical thinking needs to be revealed for what it is and it is hard to undo in a just a few weeks.  The ed beast, feeling cornered, is capable of some desperate behaviour; there are layers under there that may not even be apparent yet, BUT, this is all par for the course.  Those of us who have been around for a while have seen it before, first with our own children, individual scales falling off eyes along the way and truths writ larger and larger as we see patterns repeated with the children of others. 

Hold tight, there are normally bumps along the way for a bit longer, but it all sounds like progress from where I am sitting.  As it builds, and over time, a picture of recovery emerges that is clearer and more secure.  You have made a strong start and you sound to me like you are doing great.
Erica, UK
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emilyshUK
Ditto Colleen again! I know every hour and every day must feel like a lifetime, but you are really, truly making progress. The old saying that if you're not taking flak, you're not over the target is SO true. This will be a horrible time for you all, but it will get better. Hang in there and trust that there will be more peace and recovery in the New Year. Hugs x
Sue Shepherd
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YogurtParfait_US
Sam,

When I read your post, do you know what I saw?  PROGRESS!

She is eating--remember when she wouldn't take anything by mouth?
She is eating whole meals--WOW!!!

Yes, the exercise compulsion is still strong. That takes a while to fade. It will fade as she heals. Her weight is up but her body is still screaming YOU ARE STARVING YOU ARE STARVING YOU ARE STARVING and prompting her to forage for food for the community (that's the evolutionary explanation for anorexia--that the condition created people in each community who could starve, forage for food while starving, and share food with the group, willingly sacrificing themselves in the process).

Time at this weight will help her improve.

Also, going above the target weight is fine--it will help her to heal. And, remember, she thought she was fat before she gained any weight, so nothing new there.

New weight gain is in the tummy and face--it will redistribute.

And, some parents are enamored with our culture's thin ideals. This is natural. Some loved having a thin daughter (not an emaciated one, but a very thin one), and miss the thinnness. That's okay. (See Julie O'Toole's blog for one mom's very honest lament about how she had to learn to let go of her skinny daughter and accept her new normal-weight-one). It is what it is. This may not describe you, but it describes lots of parents, I think.

Emotionally this is a rough time. But inside her body, great things are happening--her heart and muscles are re-building. Her bones are getting stronger. Her brain is healing. And, with brain healing, compulsion for exercise will weaken.

Just love, love, love her. And be very very patient.

Sending warm support,
YP
"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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melstevUK
Sam,

I am so sorry, this is hell for you right now.

I personally - and I recognize that it is a personal point of view - would be asking the psychiatrists to review Abby's medication.  She is on quite a cocktail and sometimes anti-anxiety meds can cause agitation rather than calm it.  It is an art form rather than a pure science to get meds right.  They might take out the anti-psychotic and you might get a better effect.
Poor little mite - but it is great that the weight has gone on.
Wishing you a better start to 2013.
Hugs!
Believe you can and you're halfway there.
Theodore Roosevelt.
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YogurtParfait_US
One thing that helped me a lot with my daughter's distress about eating, and still helps me when she has a tantrum over eating, is just to say "this is how it is and it will get better" to myself.

I was getting so upset myself. If my daughter balked a bit, I would start to panic.

I feel much better since accepting that this is how the disease works, this is how early recovery is, this is the disease screaming as we work to extinguish it, and with more success more pushback comes.

Now, when I see distress, I know--she still isn't well. It is confirmation that I am doing the right thing. 

I don't feel good, but I am able to be calmer. I have to stay calmer if I am to survive this myself. I don't know how long this will last. My daughter had a very short course of AN before we caught it, and re-feeding went very quickly. But she still has a very strong ED voice in her head and wants very badly to restrict. She doesn't restrict, because she has required eating (and I am glad to say that we are able to get every single bite into her, even when there is a bad meal with a tantrum). Folks here say this is a marathon, not a sprint, and it is true.

You are valiant warriors. This is very very difficult. Sending prayers and healing thoughts for Abby.

YP
"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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Norah_US
This sounds agonizing, but I will add my voice to the chorus celebrating the weight gain. That's a fabulous accomplishment. Don't get discouraged. She is safe, she is no longer starving, she has a supportive treatment team and amazing family support. Things will get better. 
Daughter dx at age 14 with AN and depression. Currently 19 and experiencing a relapse.
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SamHeinous
Thanks guys.  It's just hard seeing her so... mentally ill.  This was just never on my radar AT ALL.  Of course, who prepares for this kind of stuff, right?  I don't know how to explain this, but there are times when I think "What if this is the new normal?  What if this is how it's going to be forever?"  Did you guys ever feel that way?  

It's reassuring to know that this isn't all that uncommon at three weeks in.  It's kind of distressing when her primary therapist says things like "she has a REALLY strong anorexic brain".  I know she didn't say it meaning to freak me out, but it did.  I mentioned that to her this morning in an email - that I'm not a glass half empty kind of gal - I'm a "the glass is BROKEN" kind of person.  

Amoma, they did a body composition thing on Abby to determine her goal weight - and they redo it periodically and adjust.  They set her at "71 pounds PLUS" meaning no lower than 71 pounds ever again, and preferably higher.  They're watching her growth pretty carefully – it appears she's grown a little in height already, so they were preparing to evaluate her goal weight again.  Apparently it's a moving target.  I didn't exactly have growth charts on her, so I had no historical data for them to go from - but I will tell you that Abby has NEVER in her life weighed more than she does right now at 71 pounds.  This is the heaviest she's ever been.

So tired.  So over 2012.


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Colleen
a)  I was totally freaked out about the severe mental illness that my d exhibited!  Have I shared one of my major meltdowns over this?  The one where I am so horrified by the situation that I start muttering, "Not [d's name], not [d's name]," in the car one day and by the time I get home I am screaming at the top of my lungs and banging on the roof of the car, "NOT [D'S NAME]!! NOT [D'S NAME]!!"

She was really out in left field.  It was frightening.

And it changed as she got better...not always the way I expected it to.  But we kept moving forward.

I wish I could go back to my own self in 2008 and show myself the future.  My d is so whole again.  She is herself again.  Not exactly the way I'd wanted her to be--ED left some scars.  But she is really really whole and healthy and rational and loving and happy.  She's facing challenges (her boyfriend is overseas and she misses him) and the unknown (graduating from college soon and looking for a 'real job') without fear or restriction.  Life is good.

I don't know what will happen with your girl, but I do know that my d was very very mentally ill and she came back.  Others have had the same experience.  It's very likely that you are seeing the ED not your d.  Hold on to hope.

b) Just some technical stuff.  I'm not a fan, personally, of body comp tests, especially so early in refeeding.  The body tends to lay down fat first so if they are comparing fat % to normal people, it's going to be skewed.  I'm especially skittish about them because we had such a bad experience when our RD did a body comp test on my d--all hell broke loose when she showed the results to my d.

Your d is so young that you should always be able to say, "Abby has never weighed this much in her life."  Her weight will be a moving target for a long time--but it will always be UP.

2012 is almost over.  You have done really well.  It may not seem like it now, but it has been a very good year--the year you saved your d's life.

Here's to an even better 2013!!
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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YogurtParfait_US
Yes, the mentally ill stuff is freaky. 

I can see that the "strong anorexic brain" comment would be difficult. But, I think also it may help to prepare that this is not a quick fix. It's not an 'out-of-the-hospital-and-she's-done' kind of thing.

Thinking "new normal" helped me. Not that "normal" meant constant tantrums, but "normal" means that I have a mentally ill daughter. This has impacted my view of her future (knowing that she might relapse), including college plans (knowing I need to guide her into rec athletics and not let her life focus become athletics, which might have been the natural course of things), etc.

I believe my daughter has a bright future. But, with anorexia in her life, I know now that I have to adjust expectations and look out for her health as my number one priority.

So, I'm not looking at a glass-half-full or half-empty, but looking at what is, and accepting that that combination of water and air is what is in the glass.

YP
"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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mec
Sam,

Our d's anxiety about eating didn't get better for at least 6 weeks. Her desperate compulssion to purge by exercising didn't go away for at least 1 year. We did things wrongly which contributed to that compulssion, such as allowing her to exercise too son thus feeding into the compulssion. But, at any rate, what you are seeing is completely normal.

Regarding mental illness and the new normal. I also came to accept what I thought was the new normal for us and yes for about 2 years I felt that we were living with shades and flavors of a mental disorder. However, today 5 years later, the last words that I would associate with our d is mental illness. She has blossomed into someone that I didn't dream could be possible - even BEFORE she got the ED. She is a completely normal teenager, happy, sociable, obedient, affectionate, not compulsive or obsessive about anything. It doesn't mean that 100% of the kids will be better than before they got sick but many do.

So, from my experience what I would say to you and YP and all the mamas of young ones is: Yes, to preserve your sanity you do have to come to terms with the fact that your child has a mental illness and that their brains will always have a predisposition for it. However, they may be able to live a normal life in the future where mental illness is not a part of who they are on a daily basis. There is no shame in mental illness or in neurobiological disorders (my son is Asperger's). But, our d lives a life free from ED, free from anxiety, free from compulsions and depression. You guys are putting in a solid foundation for your children and I believe with all my heart that your children will reap the rewards of your hard work in the future.
21 year old daughter who was DX with RAN at 9 years old. The work of recovery is ongoing. 
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papyrusUSA
Sam,  You worry about your daughter's state being the new normal.  Although we continue to work on a full recovery with my 19 y.o. daughter, a year after weight restoration, ALL of the "psychotic," violent, self-loathing, threatening, negotiating behaviors are gone or rarely glimpsed.  Don't worry, your daughter will return to you and this stage will be a distant memory.  Just hang in there, take one day at a time, breathe.
Papyrus, Philadelphia area
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SeminarLady
Sam, you have been given some sage thoughts and warm support herein.

I know that what you are going through is scary but no, this present state that you daughter is in is not likely to be her 'new normal' at all.

With good treatment, there is hope for better things to come.

I think back on where my daughter was in January 2010 - IP in dire straits on so many levels. Severe restrictive anorexia, OCD, extreme anxiety, depression, panic attack, etc.

Even after 3 months IP, she was discharged in 'guarded' condition. She spent another 2 months in partial/residential plus 6 weeks in IOP and still she was not in great shape.

It took her coming home to us in July 2010 until NOW for her to make some significant progress.

Here on January 1 2013 - she is in pretty good shape - although she will need to be in therapy for quite awhile, I would say.

It sounds to me like your daughter is off to a good start at ERC.

May the progress continue.

Hang in there!

May 2013 be a year full of progress, hope, good health and happiness for you, your daughter and for your whole family.

Hugs!
Cathy V.
Southern California
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mamabear
Listen to me. My daughter was ten when hospitalized. She did not sit down for seven months. She would hover over the toilet so she was not "lazy". We battled a severe exercise compulsion with All sorts of rituals mixed in.
I remember lying on the floor in the fetal position questioning " god " screaming" will I ever get my baby back? Will I ever hear her laugh again or hear her sing? I would cut off my arm to see her drink a glass of water!"
It WILL get better. Do not understimate her caloric needs for growth. She needs whatever " extra" weight you can get on her right now. Prepare for insane growth. Her body needs to mAke up for lost time. My daughter has grown six inches in 24 months and is growing like a weed. You will be amazed At you think you have a five pound cushion and POOF, overnight it is gone.
Yes I felt like you. Now I know that where you are right now is not forever! Her brain needs time to reset. You have to take it one day at a time and savor any teeny tiny victory. You will get your baby back....mine just asked me for her night snack and downed it in two minutes. Two years ago right now on New Years we were physically restraining her from doing crunches and were loading the car to take her for hospital admission. Love to you....NEVER give up hope!
Persistent, consistent vigilance!
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SamHeinous
Thanks guys, sometimes I just need to come here and hear that this isn't what my life will be like forever, you know?  I got an update from her primary therapist at ERC yesterday.  They went ahead and confined her to a wheelchair due to the exercise.  

Mamabear - thank you for your post in particular.  

Thank you to all of you really.  This week has been a low one for us, but like you guys have said, I'm not looking at 2012 as "the year my kid got anorexia and everything fell apart" but instead as "the year we saved our daughters life, by getting her the help she needed".  

Man, our mothers were NOT kidding when they said "being a parent might be harder than you think" were they?


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