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concernedmom44

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Reply with quote  #1 
My daughter transferred last fall to a college that is about a 4 hour drive from our home. Her eating disorder seemed to start during the fall. We really noticed it over Thanksgiving, and it became obvious over winter break. She refuses to discuss her health or anything relating to her eating and/or weight loss. This is the first time she's had any ED issues, so I'm really hoping that we can get her into effective treatment and turn things around relatively quickly, before the illness gets too entrenched. But she is incredibly strong-willed, and says she wants us to leave her alone. She is a strong student academically; and says she wants to stay in school and that being a student and living independently is the only thing that makes her feel like being alive.

She has a long history of depression, anxiety, ADHD, and other mental health issues that have made her life challenging. She's on a number of medications for her depression and anxiety, but they have never worked well enough. She's been in psychotherapy a number of times with different providers, but feels like it's never been helpful. She is extremely sensitive, and is defensive when anyone tries to talk to her about matters that she deems "private or personal", which is of course anything to do with her physical or mental health.

She finally went to a doctor, because she needed a new prescription for her ADHD meds. The doctor asked her if she was anorexic, and she fled the building, terribly hurt and scared. She took it as a judgment, not as an offer of help. I'm afraid she's now going to be even more resistant than ever to seeking treatment for the ED, as she said she's never going back to the doctor.

My H and I feel that we need to get her into treatment ASAP, but we are so confused about how to do this, as she will not agree to it. She is 4 weeks into the semester, after which we have the leverage not to pay for school or living expenses. But what i want more than anything is guidance on how to reach out to her in a way that she feels respected and empowered to choose to get treatment for her eating disorder. How can we convince her to seek treatment, and to drop her studies to do it?

What she says she wants is to be left alone; that she's finally living away from home and being independent, which is what she wants. (Because of her mental health issues growing up, she always felt that she was overly dependent on me and she now wants to be an independent adult.)  I see how depressed she is and I'm really afraid that if we come on too strong or try to take control of her, she might do something drastic to hurt herself (at worst) or that it will undermine her fledgling sense of autonomy and her hope that she can make it as an independent adult in the world.

One of the things that I think makes this situation particularly difficult is that she was feeling so depressed and anxious before the ED began; she probably feels that if she recovers from the AN. she'll feel even worse than she does at the present moment. I think the AN has given her some relief from her anxiety and made her feel a little more powerful. Without it, she probably imagines her life will feel even worse. 

I'm so eager to hear from everyone/anyone who has any suggestions and/or has been through this situation with a young adult child away at school.  Thank you so, so much!


tina72

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Reply with quote  #2 
Hi concernedmom44,
a very warm welcome from Germany and so sorry that you have to join us. Nobody wants to be member of this forum but you will soon see that you can get great help from very experienced parents here from all over the world.
I am quite new to this, my d was diagnosed 1 year ago and is now in recovery and she is 18 and still living at home, so she is "adult" but in some different situation than yours. But there are a lot of parents with adult "kids" here and I am sure someone will help soon.
Many AN patients suffer from anxiety and depression before AN, it seems to be connected in the "genetic character". They are also rule-bounded, high intelligent, working 110% and have problems to accept making mistakes. That all and the genetic disposition is a 35% higher risk for AN than other people have.
So what to do know:
Your d doesn´t see that she is ill and that is part of the disease. She will not accept that she needs treatment and she doesn´t have to be compliant about that.
I read in your post that you pay for that college and your d is not financially independent at the moment.
So the possiblity you have is to tell her that she needs to come home for at least for one semester and that you won´t pay for anything if she does not. Health is more important than college and if her weight drops more she will lose both.

"But what i want more than anything is guidance on how to reach out to her in a way that she feels respected and empowered to choose to get treatment for her eating disorder." You cannot convince her, you can only ask her to do it. The ED seems to be her friend at the moment and she has no power left to fight that inner voice. She needs you to get in charge for food intake to learn slowly after WR how to eat again. AN is a very serious disease and the big difficulty is that the patients don´t want treatment.

So don´t wait until ER makes her accept treatment. The more she is down the rabbit hole the more power you will need to get her out of that.
If necessary, talk to the college so that you speak with one voice and they also tell her that she needs a break and go home. If she is healthy, she can go back to college. You will help her with everything to achieve in future what she is dreaming of, but you will not help her to destroy herself.

"she now wants to be an independent adult"
a patient with ED is NOT independent, she is controlled by her ED
an independent adult is able to eat what she needs and care for her health

Sorry about that clear and hard words, but taking her home for refeeding is your only choice. The alternative is going to IP but if she doesn´t want help that would be difficult because she will have to sign in I suppose.
Refeeding is possible and she surely will feel better because now she has anxiety and depression which she had before ED and on top the extra depression caused by malnutrion. You can help her with that, no matter if she is 11 or 21. It is just more difficult with young adults.
Tina72
hopefulmama

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Reply with quote  #3 
Hi Concernedmom - 

I am so sorry you are going through this.  Dealing with a young adult with anorexia IS really challenging. However, you will received great guidance and support here and full recovery, although challenging, is possible. The learning curve for parents is awfully steep.  My daughter was 17 when diagnosed.  (In fact her first evaluation was six years ago this month.) So much of what we had to do to get her into recovery was counter-intuitive to raising children.  At a time when she should have been gaining independence, we were in fact taking it away from her. I slept with my daughter for months and required she ate every meal with me or at IOP. She was 18 at the time and it didn't feel normal.  But it was necessary.

Quote:
She finally went to a doctor, because she needed a new prescription for her ADHD meds. The doctor asked her if she was anorexic, and she fled the building, terribly hurt and scared. She took it as a judgment, not as an offer of help. I'm afraid she's now going to be even more resistant than ever to seeking treatment for the ED, as she said she's never going back to the doctor.


In the crazy world of ED, your daughter's response was very normal.  My d dealt with a lot of guilt and shame over having anorexia.  We talked a lot about the genetic pre-disposition and that she didn't choose it.  Anorexia is a biologically based brain disease.  I'm not sure how much impact any of what we said had with her though until her brain was healed and she could better process everything.  I continued to repeat it anyway. 

Quote:
One of the things that I think makes this situation particularly difficult is that she was feeling so depressed and anxious before the ED began; she probably feels that if she recovers from the AN. she'll feel even worse than she does at the present moment. I think the AN has given her some relief from her anxiety and made her feel a little more powerful. Without it, she probably imagines her life will feel even worse. 


This is pretty normal even when mental health issues didn't predate ED.  Although a biologically based brain disease that is not a choice, anorexia can become a maladaptive coping mechanism.  My daughter did not have depression before ED, but she did have anxiety.  She was also always highly intuitive and highly sensitive. (We didn't realize any of this until she developed anorexia.)  Even as a young child she remembers feeling that she was processing things differently and more intensely than other kids her age.  Once in place, the anorexia DID reduce the intensity of those feelings. When we took away the ability to restrict things did get a whole lot worse.  My daughter did develop suicidality and it was awful.  The thing about anorexia though is the only way out is through.  It sounds crazy but my daughter's suicidality and depression over gaining weight got better the more weight she gained. This is what makes anorexia so hard to deal with. I spent a year dancing around the anorexia trying to maintain my daughter's Independence and dignity and taking my foot off the gas when we started making progress and the anorexia was threatened, increasing the depression and suicidality.  I finally realized (in part after joining this forum) that I was not going to be able to get my daughter recovered without making her hate me and ruining her life...at least temporarily.  It is just the nature of the best of anorexia. 

Quote:
I'm really hoping that we can get her into effective treatment and turn things around relatively quickly, before the illness gets too entrenched. But she is incredibly strong-willed, and says she wants us to leave her alone. She is a strong student academically; and says she wants to stay in school and that being a student and living independently is the only thing that makes her feel like being alive. 


Again, par for the course with anorexia.  The bottom line is that college is for the healthy. It is almost impossible to treat anorexia effectively while in college.  I have been on this forum since 2012 and I have seen countless parents try it.  I can't think of a single time it has worked. 

The key to recovering from anorexia is nutritional rehabilitation (eating all foods, including lots of fats, carbohydrates and sugar) and weight restoration back to their historic weight range.  This last part was really key for us.  My daughter had tracked at 75th percentile per the CDC weight/age charts her whole life. Even at her sickest, she was just below what weight charts say was a "healthy" weight for her height.  We got her back to 50th percentile (about 20 lbs.)  She looked great, but she was still so sick.  We saw no real recovery until we got her back to HER historic weight range of 75th percentile (actually above for awhile. - which was another 15-20 pounds.) She did not gain this weight willingly at all.  We had to use every bit of financial leverage we had.  She wanted to go to college and she knew we would not pay until she was recovered.  Even once she was properly weight restored, we kept her home for a semester and didn't let her start college on time.  Evidence shows that they need 6-12 months in STRONG recovery before they are ready for college.  My d HATED us for this. She told us we were ruining her life and that her suicidality was only going to get worse.  (Not something you like hearing.)  It was SO tempting to believe that if we sent her off to college, she would want to live life and therefore get better. Anorexia doesn't work that way though.  Now my daughter tells us that we did the right thing and that she wasn't ready.  Last year on my birthday she texted me and said, "Lots of kids says they would be nowhere without their mom.  In my case, it is really true."

I think it is unlikely you will be able to convince her to leave college and seek treatment willingly.  Your options might be to say you can no longer give her money, car, gas, cell phone, etc. until she goes into treatment.  If this won't work because she has her own money, many parents have had success notifying the college of their daughter's illness and the college making the decision to put them on medical leave.  Many kids on this forum have had to withdraw, but have later gone back to college healthy and have done really well. Some parents have had success with colleges giving them a tuition credit for what they lose withdrawing for when they return.  There is no easy way around it.  She will fight you every step of the way. (Actually it helps to separate the anorexia from your daughter.  The illness will fight you every step of the way.) Much of what she will say about independence and ruining her life will scare you and make a lot of sense. Don't doubt yourself.  It is THE only way out.

I'm not sure if you have read any books about anorexia.  There are lots.  The ones that helped me the most were:

1 - How to Help Your Teenager Beat an Eating Disorder by Lock and Legrange. The authors developed the treatment modality known as FBT.  Even if you don't use this approach (harder with a young adult - but not impossible) this book is still so helpful understanding what the process of recovery looks like.

2 - Decoding Anorexia by Carrie Arnold - Carrie is a scientist and long term anorexic who finally achieved recovery as an adult.  She really describes the science of what you are up against and how the anorexic brain really turns on the patient.

3 - Life Without ED by Jenni Schafer. This book helped me see into what was going on in my daughter's head and why she didn't and couldn't WANT recovery and why I had to want it for her.

It is all so overwhelming I know.  I would suggest educating yourself as quickly as you can.  Come up with a plan to get your daughter into treatment and then present it to her.  Know that when it comes to treatment programs not all are created equal.  Your d will probably need a program that treats the ED as well as her pre-existing depression.  Has she had any exposure to DBT?  This helped my daughter so much with pre-existing anxiety. We can help you explore treatment options.  Another good place to start is to have her evaluated by a medical professional who knows EDs. (Sadly, most medical professionals miss the boat.) If you let us know where you are located geographically, we can suggest ideas of a provider. Again though I will say, total recovery is possible.  I refused to accept less for my daughter.  She DID go onto college and graduate.  She is healthy and ED free and managing a perfectly imperfect life. I won't minimize the hell we went through to get here, but it IS possible. 

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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!
Torie

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Reply with quote  #4 
Hi ConcernedMom,

I remember that when I was just started this journey, hopefulmama gave me really good advice and also inspiration and HOPE.  I shudder to think where we would be if I hadn't found this forum.

I guess our stories are all similar in some ways and also of course different.  My descent into hell started abruptly when I realized my d was deeply depressed, talking about killing herself, and cutting.  Those things preceded ED, which made me wonder if weight restoration would help my d as much as it helps some of the others.  Like your d, mine found comfort in starving, and her weight loss was dramatic as she was fasting for a day or two at a time (unbeknownst to me, as she lied about eating lunch and dinner with her friends and we've never been big on breakfast).  Like hopefulmama, I slept with my d for quite some time as I was worried what would happen in my absence, and I think we both slept better that way.  I locked up all the meds and sharps. (So well that now, 4 years later, I still can't find some of my stuff.  Oh well.)

My d was younger - just turning 15 at the time.   That makes it much easier in a lot of ways, but still, it seemed very odd to become so ... everpresent ... at a time her peers were becoming more independent.  My d told me I went from being the least overprotective of all her friends' moms to the most.  I explained to her, her therapist, and much of the outside world that I wasn't acting this way because it is my nature or habit, but because of the extraordinary circumstances.   It's so tricky.  And really hard.  And depressing, sad, and mostly terrifying.

If you are worried she might attempt suicide, the first order of business is to keep her safe.  You probably know that ED has a high mortality rate (the highest of all mental illnesses and comparable to many childhood cancers) and that about half of those deaths are from suicide.  I wonder if it might make sense to require her to come back home to be treated for depression.  Antidepressants (and other treatments) are generally not effective during active AN, but she could begin learning skills to use later, and - more importantly - it might provide the most palatable reason to bring her home.   

Although there are no guarantees that weight restoration will vanquish the depression (although it did for my d), it is a pretty sure bet that she will not be able to get out from under the depression unless and until she is weight restored.  I, too, was fearful that requiring my d to regain the weight she had lost - all of it - would make her more suicidal, I knew that she would not be able to get well unless she did regain that weight.  

We were lucky that we started refeeding before she had lost TOO much weight or spent too long ingrained in AN thinking.  Although she was near to the border of "an unhealthy BMI," she never actually crossed the threshold into officially being underweight.  I have always thought that she would have ended up IP or in residential treatment if we had waited even one more month (or perhaps even two more weeks) to begin refeeding.  She was going downhill FAST.

I don't know if it is helpful for me to tell you all this about my journey, but I know it was helpful to me when hopefulmama and others told me their stories.  My d is doing really well now, off at university 3 1/2 hours away, and seeing a therapist for her anxiety disorder.   When she was home over Christmas, someone asked how everything was and she said, "SO good."  I know you want that for your d, too, and it is just not possible when they are in the throes of ED.  There are no guarantees what tomorrow will bring even if you do vanquish ED, but unless you do, I really don't think she can have the type of college experience she deserves.

Please feel free to ask all the questions you like.  Hang in there.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
concernedmom44

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Reply with quote  #5 
tina 72 and hopefulmama and Torie -

Thanks so much for your replies; I can't begin to tell you how helpful it is to hear from you. I am feeling so incredibly scared and overwhelmed right now. For the last few weeks I have been immersing myself in everything I can find about ED and treatment for AN: reading books, articles, discussion boards, watching youtube videos, listening to podcasts.... In a strange way, the more I learn, the more confused, scared and paralyzed I feel.  This all stems from knowing my daughter so well, knowing that she will resist any attempt I make to get her into treatment. We have always been so close, and now I feel how wary she is of me. She has done a remarkable job these past weeks of pushing me away, and "training" me to not to say anything about her health or her eating disorder. She tells me that she will maintain contact with me only if I stay "positive", and talk to her about "nice or happy things", but she will cut off communication the moment I bring up the topic of eating, weight, or her health. And it's remarkable, if I send her a friendly, warm text about something, she responds in a friendly, loving way. If she senses me getting close to inquiring about her health, she goes silent immediately. I can't believe how affectively and completely ED seems to have taken her hostage, my sweet daughter who've I've always been so close to. Now I feel I'm on eggshells, and I'm so afraid to do or say the wrong thing. My H tells me I should just drive to her college and talk to her directly about taking a leave of absence of school and getting into treatment, but I feel paralyzed. I went to see her recently for a different matter, and she was hardly willing to be around me, she kept telling me she was too busy to spend time with me. She looked so thin and pale, and seemed so depressed and exhausted. I tried to gently invite her to have dinner with me, but she said she was too busy. I wonder if she's eating, I suspect she's not eating nearly enough to maintain her already low bodyweight.

I'm having such a hard time, I feel that I'm barely able to function and attend to all the other things I need to do. I'm not sleeping well, and I find it even hard to eat sometimes. I know I need to take care of myself -- and I am -- but I feel so overwhelmed with all of this. I just want to hold her in my arms and convince her to let us get her the help she needs. I love her and care about her so much, and I want to save her from this horrible monster of an illness. But I'm so afraid to do or say the wrong thing, and hurt our chances to convince her to seek treatment and/or delay or lessen the likelihood that she will seek recovery on her own.
Torie

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Reply with quote  #6 
Quote:
Originally Posted by concernedmom44
My H tells me I should just drive to her college and talk to her directly about taking a leave of absence of school and getting into treatment.


It's great that your h supports the idea of pulling her from school and getting treatment.  I don't know much about the dynamics in your family, but I know I would want my h alongside for that conversation if I needed to go break that news to my d.

If you don't mind telling us your general location, someone could suggest a provider you might call for some background information about treatment.  Many here speak highly of the one-week intensive programs at UCSD (San Diego) and its sister program in Ohio.  Not sure how old your d is or how often or even if they run the program for that age group.  You might want to give them a call and ask for their advice in getting your d into treatment.  It is almost never easy to do, and they have tons of experience finding a way to get them there.

Honestly, there aren't all that many places I would consider for my d, having heard horror stories about outdated treatment and dealing with a clueless pediatrician and therapist myself.  Veritas, ERC Denver and CHOP (Philly) come to mind, but of course there are others.  Also not sure what age groups are treated in those practices.  Forum member Kali had great success with a group in NYC that treated her college-aged d (who had to be pulled from college), but I can't think of the name.  Also, not sure they accept sufferers with co-morbids, although pretty much all AN sufferers are depressed and anxious.

I just realized I'm assuming you're in the US, although not sure why I jumped to that conclusion. 

Please know that there is loads of HOPE, especially with such a caring mom / mum so concerned so early.  And please know that we are with you in spirit as you prepare to do battle with this monstrous bully of an illness.

Keep swimming.  xx

-Torie

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

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Reply with quote  #7 
Quote:
This all stems from knowing my daughter so well, knowing that she will resist any attempt I make to get her into treatment. We have always been so close, and now I feel how wary she is of me.


Again, this is so normal.  My d has always been strong willed and determined.  As a baby, she would turn her pacifier upside down because she liked it better that way. Know though that what you are seeing with your daughter is not HER or HER personality, it is ED.  The more your challenge ED (by talking about treatment, etc) the angrier she will get and that anger will be directed at you.  There is a saying on this forum that if you are getting flack then you know you are over your target. 

Quote:
Now I feel I'm on eggshells, and I'm so afraid to do or say the wrong thing.


Yup, we have all been on eggshells.  I walked on eggshells with my daughter for a year and got nowhere.  I will be incredibly frank.  It is NOT possible to help your daughter to recover while walking on eggshells. Believe me, I tried.  I often tell people I was the most ill prepared person to have a daughter with anorexia.  I hate to see my kids suffer or be upset with me, even my non-ED boys.  I know all moms hate that, but I had an almost pathological need for my kids to be happy with their life and with me.  It is not compatible for recovering from ED.  I finally decided that I would rather my daughter be healthy and hate me than like be and be a functioning anorexic.  Once she was healed physically, she came back around.  We are incredibly close now. 

Quote:
For the last few weeks I have been immersing myself in everything I can find about ED and treatment for AN: reading books, articles, discussion boards, watching youtube videos, listening to podcasts.... In a strange way, the more I learn, the more confused, scared and paralyzed I feel. 


Part of this is because there is SO much mis-information out there. The evidence based treatment of anorexia has changed so much in the last 10+ years.  The idea of it being about control, or addressing underlying issues, dysfunction in the family or waiting for the anorexic to decide they need help is old school and non evidence based. Sadly, many ED professionals have not kept up with the times.  In order to get my daughter well, I had to become an expert.  Many on the board have done the same and shared their knowledge with me so I could figure out what evidence based treatment was and where to find it.  We are here for you too. This old school treatment is how girls I knew in college in the '80s were treated. Guess what?  I see them now on Facebook or at reunions and it is obvious to me they are functioning anorexics. I knew that would not be my daughter. 

It is great that your husband is ready to go to battle with you.  Take a little time to adjust to the new normal and steel your resolve and then come up with a plan A, B and C.  As Torie said, the true evidence based facilities out there are few and far between.  (Although I will say I see improvement since my daughter got sick 6 years ago.) This is a great FREE resource to help you navigate options that match up with insurance etc.

https://www.allianceforeatingdisorders.com/portal/

Chances are your daughter is not going to go withdraw from school willingly.  It helped me to manage my own anxiety to have a contingency plan or two.  Come up with a plan for how you will address it if she doesn't.  Steel yourself to all of the terrible things and threats that ED will make.  She will never talk to you again, never forgive you, kill herself, etc. Again, it helped me to be prepared. 

As Torie said, we are here to help you. Let us know where you are and we can make some additional suggestions. Don't just go to a doctor. They don't know the tests to run or what to look for.  I did that and the doctor said she was fine.  When we finally got seen my a true ED MD, he evaluated her heart starting to eat itself (non medical term) and her BP was terribly orthostatic.  

__________________
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!
concernedmom44

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Reply with quote  #8 
Thanks so incredibly much for taking the time to write and share your wisdom and advice with me. (I can't wait until, someday in the future when my family has come through this,  I will be able to pay it forward and help others at this dreadful, scary time in their lives!)

I had a long, difficult phone conversation with my D this afternoon. I told her that her psychiatrist told me that she would no longer be able to prescribe the meds she depends on for her ADHD until her health has been restored and it will be safe for her to take a psycho-stimulant again.  My D was full of rage, saying that the med she is running out of now is the only thing that allows her to function, which in turn will worsen her depression. (And it's true, I've personally witnessed how taking Vyvanse over the last few years has seemed to help her more with her depression and anxiety than all the other SSRI and other meds she's on.) D talked about how much worse her depression has become, and that she has no hope that her life will ever feel worth living. (She has suffered with depression and anxiety for over 10 years now, and it's horrible to witness how it's as bad or worse than ever. I know this could be partly explained by malnutrition and weight loss, but I can also attest to the fact that depression and anxiety were bad long before ED showed up.) 

D said that she would not agree to come home for treatment because the worst feeling in the world was over this last winter break when she was at home with us and she could tell that I was observing her eating and always trying to get her to eat more. She said she is not willing yet to get treatment for her ED, but even if she did, she would not be willing to come home and have us dictate what she would eat. 

OK, we are in northern California, (Santa Cruz county), not far from the SF bay area. She is currently in college near Sacramento. Treatment centers that have been suggested for inpatient and/or outpatient include the Eating Recovery Center (ERC) in Sacramento, the Stanford eating disorders program (at Lucille Packard?), and the Lotus Collaborative (one in SF, one in Santa Cruz).  I'd love to hear any feedback about any of these programs, and any other programs in the general area, as well as any good psychotherapists or related practitioners in any of these areas, especially if they do good work with ED in combination with major depression and anxiety and ADHD.

Many thanks for your continued support and sage advice!


AUSSIEedfamily

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Reply with quote  #9 
Dear concernedmom44

Have you tried the team at USCD?

I wonder if there was an opportunity to get into the NEW FED TR program there?

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Reply with quote  #10 
I am sorry that you have found yourself in such a difficult situation. I have a 21 year old who fortunately is further along this journey than yours. Many of the things you mention about your D however are common and typical for those with ED. You mention that the anxiety and depression came before the ED, in hindsight I and many others have found that although it is an issue it is intimately entwined with the illness and certainly for my D was probably AN hiding and waiting to emerge.

This is the program that Aussieedfamily is suggesting, though I note it is not currently listed. http://eatingdisorders.ucsd.edu/treatment/intensive-yatreatment.html

UCSD however has world class eating disorder treatments and is very highly regarded. 

It is normal and typical for those with eating disorders to underestimate the severity and significance of their disease, and to isolate themselves from anything which threatens it. With adults of course there is always a risk that they flee treatment as the prospect of facing it can be overwhelming. She does have a life threatening illness, if she has lost so much weight that she is being asked outright if she has anorexia it is likely she is potentially critically unwell, so it is essential that she is getting good medical oversight and she may end up needing involuntary treatment to save her life. 
When trying to get her treatment - these sites have some suggestions about how to approach her http://eatingdisorders.ucsd.edu/treatment/intensive-yatreatment.html  and http://www.nedc.com.au/what-to-say-and-do

Trying to get her to go for medical assessment is important, so expressing concern about this first off is essential. If she is continuing to lose weight she is at risk of heart complications and these can happen quickly. 
If she is going for medical assessment then again making sure that the doctor knows what they are doing is important. The last doctor may have frightened her, but the very fact that they asked suggests they have some knowledge of eating disorders and may be useful in getting a clear diagnosis and starting to engage in treatment. 

I would also suggest it is worth pursuing what your options would be for compulsory treatment if she becomes more unwell. Things could deteriorate rapidly, and it is not at all unusual for someone with an ED to refuse all treatment. 

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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.
Kali

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Reply with quote  #11 
Dear Concernedmom44,

I am sorry your daughter is not well and you find yourself in this situation. I want to give you some hope that you will be able to cope and get your daughter on the path to recovery.

I will chime in as a parent who had to bring my d. home from university because she was too ill to remain there. In our case, we knew there was an issue before she went off in the fall and she had a therapist she checked in with weekly. By Thanksgiving, it was clear that things were going downhill with her ability to eat, and her therapist referred her to an IOP and that team was recommending residential treatment. She signed herself out on a medical leave, and I brought her home and she went into treatment. 

She was completely exhausted and somehow understood that even though she was not able to control what was happening to her and to eat, that this was a serious problem and no way to live. So she agreed to go into treatment. 

That is not to say that it wasn't very difficult when I got her home, with refusal to eat, screaming that I was trying to make her fat, screaming at me that she could have finished her exams, dr's visits to check her heart and electrolytes, self-harming and leaving blood all over the bathroom, sneaking out the door to go on compulsive runs, etc. The two weeks between coming home and before she went to residential are the stuff nightmares are made of. And did I mention that she totally hated me?

We didn't really get the school involved until it was time to fill out the medical leave forms. In order to do that your daughter will need a note from a doctor with a diagnosis and a recommendation that she take time off to be treated. The school allowed her to use the tuition money we had paid for the failed semester when she returned and applied it to her next semester. They let her take 13 months off and then return when she was well enough and they insisted that she be under the care of an outpatient team upon her return, and that she be in treatment the entire time she was on leave. (Yay) They promised us that the withdrawal from classes would not affect her scholarship and it didn't. 

I want to reassure you that we have had what I feel is a very positive outcome. My d. returned to school and is doing well socially, academically and with her eating, and still has treatment safety nets in place. She gets weighed, meets with a nutritionist, and sees an MD and talks with a therapist. Sometimes the process has been 2 steps forward and then one back, and I am still vigilant and have an eye on visit once a month. Last summer she was able to go on a study abroad 5 week trip with her school and lived with a family who fed her while she was there and it went well. She has a boyfriend and seems to be doing the things that other kids her age do and is starting to become more independent and take responsibility for maintaining her health. But I really believe that taking her out of school and getting her into treatment saved her life.

She was in pretty intensive treatment for the first 6 months after she left school, 3 months of residential, 4 weeks of php, 6 weeks of iop, then when she transitioned to an outpatient team she started to lose weight again and I refed her at home. It took a long time. 

You can leave all doors open with the school for when she is able to return and encourage her to use that as motivation to get better. In your shoes, I would be trying to find the best possible treatment situation for her so that she really has the best chance possible for recovery. We went to visit several with our d, I asked questions, and I spoke with parents of kids who had been treated in the places we considered before making a decision. 

There is another family on ATDT, by the name of dc, who also took his daughter out of school because she was ill, and she went into treatment in California. She is well enough to return to school now. The treatment she got sounds amazing. Here is a link to his thread describing the treatment she had there:

http://www.aroundthedinnertable.org/post/our-journey-at-ucsd-eating-disorder-center-9605022?pid=1303001434#gsc.tab=0

I know this is not that close to where you are but it sounds so excellent that you might want to look into it. I believe his daughter was in the PHP program and they take insurance. 

Here is a post I wrote late one night about how that time in my life felt. 

http://www.aroundthedinnertable.org/post/up-late-at-night-doing-some-creative-writing-9508349?highlight=creative+writing&pid=1302045591#gsc.tab=0

Quote:
I told her that her psychiatrist told me that she would no longer be able to prescribe the meds she depends on for her ADHD until her health has been restored and it will be safe for her to take a psycho-stimulant again.  My D was full of rage, saying that the med she is running out of now is the only thing that allows her to function, which in turn will worsen her depression. (And it's true, I've personally witnessed how taking Vyvanse over the last few years has seemed to help her more with her depression and anxiety than all the other SSRI and other meds she's on.) D talked about how much worse her depression has become, and that she has no hope that her life will ever feel worth living. 


This situation seems like a great way to begin the process. Can you make an appointment with your daughter and the psychiatrist with the goal of having her diagnosed and ask him/her what recommendations he/she might make for treatment and how to proceed? The dr. can also write the note to the school about her diagnosis and medical leave. There are two issues here: One is that sometimes it can be helpful to have a dr. saying the same thing as the parent, that she needs to be in treatment and to take some time off from school to do so. The other problem is that at least my understanding about going off psychiatric medication is that it needs to be responsibly supervised by a dr. and that it needs to be done gradually, not in a situation where you just run out of pills and stop. This seems dangerous to me since she suffers from depression, and as a parent, I would want to step in here and make sure that she is safe. Can you also reassure her that her life will be worth living if she takes a leave of absence and takes care of her health and then returns to school when she is feeling better?

We are not drs and can't make medical recommendations, but I took a look at the health info for Vyvanse and was struck by the fact that side effects can include loss of appetite and weight loss. http://www.vyvanse.com/ Can you discuss this with the psychiatrist? 

What are possible side effects of Vyvanse?

The most common side effects of Vyvanse reported in ADHD studies include:

    • anxiety
    • decreased appetite
    • diarrhea
    • dizziness
    • dry mouth
    • irritability
    • loss of appetite
    • nausea
    • trouble sleeping
    • upper stomach pain
    • vomiting
    • weight loss


Keep asking questions and other parents will be here to support you.

Warmly,

Kali






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Torie

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Reply with quote  #12 
Quote:
Originally Posted by Kali
 This situation seems like a great way to begin the process. Can you make an appointment with your daughter and the psychiatrist with the goal of having her diagnosed and ask him/her what recommendations he/she might make for treatment and how to proceed? 


Agree.  If you call the psych, they might say they can't talk to you more about your d without her permission, so it's important to know that they are always allowed to LISTEN to what you have to say, even if they can't answer your questions.  I would suggest that you call and speak to the doc to make her/him aware of your d's situation.  Another thing that happens sometimes is that you can ask for GENERAL information.  For example, my non-ED d was overseas and trialing a new antidepressant that wasn't doing any good so she wanted to taper off it and asked me to call the doc to find out how that works.  The first thing the doc said was that she could only talk to my d about this (not to me), but when I explained that I wasn't asking about my d; I was asking about the medication she was fine giving me the information I needed.

I also agree that UCSD is worth considering even though it is a good distance away.  I know ToothFairy has said she would take her d to the one-week program there if need be, even though the ToothFairy family lives in Ireland.  They really are among the best in the world.

Since I'm on the other side of the country, I'm not too familiar with the places you mentioned, but you could try looking  at the Parent Reviews of Treatment Providers here (members only) and see if there are any threads about them.

Good for you to have that tough conversation with your d!

"D said that she would not agree to come home for treatment because the worst feeling in the world was over this last winter break when she was at home with us and she could tell that I was observing her eating and always trying to get her to eat more."

I realize how weird this sounds, but that wasn't your real d talking; it was ED.  It is downright creepy to see ED morph them into an unrecognizable entity complete with a different voice and dead eyes (at least, that's how my d was).  Ugh.  Anyway, there's no telling how your real d feels about this - quite likely she is actually hoping you will rescue her.

I'm really glad you had that conversation.  Sounds like a good first step.

Keep swimming.  xx

-Torie

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Kali

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Reply with quote  #13 
Hi Concernedmom44,

I forgot to say in my letter to you that I think it is possible you can get your daughter to agree to go back and talk with the psychiatrist with you because she knows that she needs medication for her depression. So that might be the way to approach her and to start the process. You then become someone who is "on her side." If she balks you can try saying "We need to make sure you are getting the correct treatment." Go ahead and make the appointment and tell her when it is.

Quote:
I tried to gently invite her to have dinner with me, but she said she was too busy. 


Gentle inviting will get exactly this reaction because she is frightened to eat. What we as parents need to do is to start establishing firm boundaries around eating and then strengthen them as we go along. "It's lunchtime let's go get something to eat now." said in a casual but firm voice. If she says she is too busy then you can try saying "Well then, let's go get something very quickly because I know you have things to do. I'd love to spend a little time with you." If you ask you give your daughter the opportunity to say no.

Kali

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Reply with quote  #14 
Hi,
"I told her that her psychiatrist told me that she would no longer be able to prescribe the meds she depends on for her ADHD until her health has been restored and it will be safe for her to take a psycho-stimulant again."
That is a great idea to get her into the boat. And it is very true, because most psychological meds don´t work while the patient is underweight.

"My D was full of rage, saying that the med she is running out of now is the only thing that allows her to function, which in turn will worsen her depression."
So if she wants to have those meds, she needs to work on the ED.

"D said that she would not agree to come home for treatment because the worst feeling in the world was over this last winter break when she was at home with us and she could tell that I was observing her eating and always trying to get her to eat more."
So you seem to have done something right and ED is now afraid of you...
So maybe you can give her these two options: she is going IP somewhere or she is coming home.

Tina72
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