Eating disorder at college - looking for advice from other parents

Parents Forum
1

This is a really, really difficult post to make. I have been hesitant to make it at all, but feel very alone and frightened for my daughter: hoping some parents with experience in this can offer some advice.

History: D has a history of serious depression, disordered eating, and substance abuse stemming from an undiagnosed learning disorder. Halfway through junior year of HS things got very bad and she finally realized she needed serious help. Therapy and medication. She worked hard to get better and succeeded… as far as I know the eating disorder was in remission for at least 18 months.

When she went to college last fall, we tried to set up the best possible safety net/support for her, “just in case”. She, of course, felt everything was under control and would be fine, but we’d been through hell and back during high school and were hopeful but realistically, I believe, worried. Her psychiatrist and therapist at home agreed she was doing extremely well, by the way, and had no concerns about her going off to school. We did, however, ask her to go into the counseling center during the first couple of weeks at college and meet with someone and tell them her history and have that relationship cemented so that, in the event she needed help, she’d already know someone there and it would be easier.

I also went in and spoke with the counseling center: I wanted to make sure they knew her history and I guess I hoped for some reassurance. Unfortunately I just got the “we don’t talk to parents” privacy thing. Which I do totally understand… but it makes things very hard -very scary- from our point of view.

She seemed to be doing incredibly well. She seemed happy and engaged and got good grades her first semester. But we’ve just learned that her eating disorder is back and she’s also doing a lot of drugs. (The two, of course, are intertwined psychologically) Apparently at least since late October. And she never went for any help at the counseling center.

We are very scared for her. And feel very helpless. We talked to her and she admitted she had a problem. We told her that she needs to start going to the counseling once a week and that we want her to sign the HIPAA form so that we can make sure she is actually going. She really balked at that. But she is SO good at lying to us and telling us exactly what we want to hear… we’d forever be worrying she was lying about going to counseling, I think! For example, my instincts about her are really uncannily accurate. I’ve had an increasing niggling worry for a month or two now. When she was home on break I tried to talk to her about it, and we had a very nice, apparently open and honest discussion about what she said was some minor drug use, and I wanted so badly to believe her that I did. I feel so guilty and terrible when I have these suspicions or worries… yet they almost always turn out to be true. I even had a couple of flashes of “what’s she doing in the bathroom right after dinner?!” when she was at home, but I quickly slapped my own wrist, as it were, and told myself I was being ridiculous. But it turns out I was not.

I don’t know what to do. I am so afraid that she will just snow the counseling center people the way she snows us. I know that she needs to want help to get it. I know that. But still— it is a helpless, awful feeling to know she is struggling so much and be unable to help or do anything.

Also- there is a limited number of counseling sessions available at the health center. Should we seek an outside therapist in her town?

Also- of course we have told her how much we love her and support her always. She knows that.

2

I’m so sorry to hear about this problem. Have you been to this website? www.aroundthedinnertable.org. It’s for families with children or other loved ones with eating disorders. You’ll find a huge amount of support and many people willing to offer suggestions there.

3

I am so sorry that you are having this occur with your family!
My opinion is that you have to take it head on, counseling, nutritionist, medical doctor etc. what ever is necessary. Love and support of course but additionally being very direct about what has to happen in order for you not to take her out of school. What she is experiencing is potentially life threatening, her education is important her well being much more so. If it is practical your physically being there when she goes to counseling sessions or having a portion of the session telecast, at the very least a phone consultation with the therapist afterward. You need to have a professional’s sense of their evaluation as to what is going on. Given what you have described about your daughter I would speak to the counselor that she will be seeing and provide them with as much history and detail as you can.
With your having been through this you know these things do not get better on their own, you have to be direct and tactful but aggressive. Is she close enough that you can take a day or two off and get over to see her? As the father of a recovered anorexic my heart aches for you!

4

I think in your heart you want to bring her home, get her back into treatment with people who know her and can help her manage her disease. I think in your heart you don’t want her living far away when you don’t know if she’s seeing her nutritionist (I assume that was part of the deal?) and getting regular weigh in’s. I think in your heart you want to make sure she is actively participating in her recovery and not sabotaging it.

So what is stopping you?

5

Thanks for your replies.

@GreatKid, I do not think the counseling center is going to be responsive to parental involvement. They certainly were not when I tried to meet with them prior to her matriculating in order to fill them in on her history. However, I’ll be calling them or the student dean or whoever tomorrow to see what I can do. It just seems way too scary to not be involved, but I fear they are going to say that’s how it has to be since she is over 18. I’m also going to call her local psychiatrist and fill her in and ask for her advice.

@blossom No, I don’t want her to come home, really. She is really engaged and excited about her studies. I don’t think that coming home would be good for her: she would just sit around all day on the computer and be horribly bored and sad. In fact I think the best (only?) hope is for her to realize that this behavior is jeopardizing what she really loves and cares about, which is her studies right now. I think she has to see that and want to get help. She is very, very smart and I think she can do that. at least I hope so. But I also think she needs someone keeping a close eye on her and helping and supporting her, and it is heartbreaking that I cannot do that from here.

6

Unfortunately, your DD is falling back on her ED as a coping mechanism. The dual diagnosis, with drug abuse, LD, and depression is making matters worse. One thing she is still in control of is her studious ness. I wonder what will happen with midterms and more pressure. She was also in control of continuing her therapy. She chose not to do that. I would probably move her home. Look into on- line courses or a class at a local U that would count towards credit.

7

I think by bring her home you demonstrate the priority that getting this health maintenance has over her schoolwork. And sitting around shouldn’t be an option, a job should. Also what kind of drugs we are talking about is a potentially big deal vs smaller deal.

8

Do you have legal access - that is, do you have power of attorney and healthcare power of attorney forms that are valid in the state that the college is in? You should have those for your kid specially for this kind of situation where she may have emotional / psychological issues that may prevent her from seeking timely treatment.

9

i think it is going to depend on what resources are available - is it a big university with an associated hospital and a whole plethora of professionals that can intervene or is it a small college with no resources. These kinds of mental illnesses are tricky, some people can function and appear somewhat “normal” even if they are physically harming their body on the inside and others need far more help than a college can or should provide.

As a parent, I, too, would personally have a hard time leaving a kiddo in college with these kinds of disorders without have them sign-over access to protected medical records. That would be a hard stop for me because that gets to the heart of the “trust issue.” I would want my kids to know that they can continue and we would continue to pay and stay out of their business as long as they were taking care of their personal and emotional health (as equally important as the grades).

10

Again, thank you very much for the replies.

Ugh, you guys are scaring me with this “bring her home” stuff. Her ED is not life-threatening at this point, not at all. She is still at a healthy weight. I believe she is restricting and purging, but not every day (?) @BrownParent the drug use, to the best of my knowledge, is probably daily or near-daily pot-smoking (although not to the extent of missing classes) and hallucinogen use (LSD, mushrooms). She is doing well in school and excited about her studies. Yes… clearly she has fallen into using these two things as a coping mechanism where before she was using healthy ones like yoga and art or whatever. Clearly she has slipped (and all of her therapists and doctors warned that it’s inevitable) but I don’t think it’s life-threatening right now. It would really just crush her to come home. The thing that enabled her to get out the swamp of depression and unhealthy behaviors last time was the thought of college. It’s everything to her. It would just be so punitive to deprive her of that. I want to try to help her without having to do anything so crushing to her.

I don’t think we have legal access @scholarme. We did not sign any special forms or anything, if that’s what is entailed. When she left for college she was doing SO well and had been for so long, her doctors did not think anything like that was necessary.

11

Well the drugs are illegal so there are potential ramifications with that. The eating disorder is harmful to her body. What is wrong with making her stay in college contingent on not using drugs and continuing counseling with you having access to her medical reports? If she continues to use drugs or continues with the eating disorders that can be your trigger - she does what she needs to do or you will do what you need to do. She’s compliant she stays, she’s not compliant she comes home until she’s got her issues under control. I’d feel the same way about a kid that got several MIPs or honor code violations. It’s a privilege to be in college and with that granting of the privilege can come some basic expectations. It’s really no different a hurdle than when we handed over the car keys to the kids for the first time, or let them travel alone, or any steps toward adulthood. Since she’s “happy” (maybe) and her grades are good I personally don’t see anything wrong with leaving her there but I absolutely think you can put some boundaries around that.

12

I hate to make you feel worse, but someone who is purging is engaging in life-threatening behaviors, no matter what the person’s weight is. And the use of hallucinogens can also be life-threatening. Last year, my daughter lived for a few months in a house (not on a college) with two men. Both of them are very nice people. The younger one, 23 years old, was regularly using pot and hallucinogens. One day, fortunately while my daughter was out of town (she actually was home, visiting me), the 23-year-old roommate took off all his clothes, stabbed himself, and went outside and into the street, where he was hit by a car. He’s alive today only because someone found him right away and administered CPR. Like I said, this wasn’t on a college campus. An additional danger at school is that if a person is dealing drugs as well, the person can be kicked out of school and, even if not, be ineligible for student aid.

13

I think you should look up getting powers of attorney. As I understand it, she signs, you sign, get it notarized, file it with college. It will help you advocate for her in case she gets into any issues with the college. If you have a lawyer he can draw them up, or you could look up sites that have sample forms.

14

How is that different than the Hipaa forms?

15

I would recommend that your daughter sign a release that allows her doctors and therapists to talk to you.
Then you can have a frank discussion with her care professionals and decide what’s best now and also keep in contact in the future (bidirectional flow of information). Another release can be signed so your daughter’s former counselor(s) can be in touch with the new ones to fill them in. The counselors should have releases in their office or on their website. Your daughter may not want to sign the releases but you could make that a requirement for her staying at school.

16

^ Yes, this is what we intend to do. Mainly to know for sure that she is attending counseling. We do not want to know what they are talking about: she needs to feel safe/private in what she shares with her counselor. But it would make us feel a lot better to be able to tell the care providers about her history and our concerns, and make sure she’s going, and have them feel they can contact us if things get worse.

17

@cathrineholm, my heart goes out to you. I work with many young people with eating disorders.

“Her ED is not life-threatening at this point, not at all. She is still at a healthy weight. I believe she is restricting and purging, but not every day (?)”

How can you know? This is a relapsing, chronic illness, and you say she is excellent at deceiving you.

“It would just be so punitive to deprive her of that.”

Would you consider it a punishment to ask her to come home for cancer treatment? The problem isn’t that she’s having symptoms; the problem is that she’s refusing treatment and lying about it.

At a bare, bare minimum, I’d require her to sign a complete HIPAA and FERPA release, allowing you full access to her medical and academic guidance, as a condition of remaining at school on your dime. You can’t continue to support the status quo.

18

Add me to those who are so very sorry this is happening. I agree with Hanna’s responses. A good friend of mine went through a lot of what you have with your daughter and made the very difficult decision to restrict her daughter’s college choices to commuter schools in terms of what the parents would pay. They simply could not trust her when it came to her eating disorders and other issues, and they felt they had to go that way. The very question they asked themselves was what they would have done if the health issue were physical with similar mortality and morbidity rates, and the answer was very clear. No, the daughter did not react well, and everyone was very unhappy for a while about the decision.

But she did get through college, two relapses and finally understood that she had a lifetime disorder. Did go away to an ivy for grad school, and is now a mom of two, doing well, and understanding that she has a disease that she needs to monitor and is doing so. Took her over 15 years to get to that point, however, and put herself and parents through the wringer. There was a very good chance she could have been dead had she gone away to college. Another girl in her counseling group did not survive her college years.

So you are not trying to be popular, endearing, or trusting your DD but want her to have the best chance of surviving her illness which is definitely life threatening. It’s tough for all young people to go away from home at first, and that’s unfortunately right at the time when the mental health demons start a-popping big time. The time between their arrivals and the maturity to handle them setting in, can be harrowing even to those who do not already have an underlining problem,much less a life threatening one.

19

CH

In another life I worked in Student Affairs and was in charge of a dorm. This requires both carrot and stick.

I would call the dean or assistant dean of student affairs or residence life. Even better, find the right person, give them some background and schedule a call.

You need experts and most colleges have designated people. This will require the dean, counseling center and even people in residence hall.

Our dean use to coordinate and personally follow up. If the student didn’t make progress they terminate them from the residence hall.

This stick with a lot of carrots seemed to work. The counseling center was involved etc.

I would plan on getting down there ASAP

20

You have so many issues to face, and my heart goes out to you. You’re not alone. Many of use are there. There is the immediacy of college but also the longer range decision of how involved to stay in your adult child’s health care. When you have a child with mental illnesses, one of the challenges is accepting that the diseases are ongoing. You will not get to a point where the child is well and you can safely let go with no risks. You’re fairly new to the journey. I totally understand where you are, hoping that things aren’t really too bad. It is your first real experience with the episodic nature of these diseases.

My experience is that placing too much faith in campus health is also not a good route to go. Look, you wouldn’t expect camou health to handle dialysis or oncology needs, why are they ok for mental illnesses? You need a prescribing pdoc and a therapist who won’t limit number of visits. Campus health is fine for run of the mill and short term stuff, but when you need a specialist. Look elsewhere. I say find someone nearby the college. You EOBs will tell you if she’s attended and you can fill out the same paperwork allowing communication at a private practice that you can at a school.

I wouldn’t be comfortable with my 18 year old who I knew was using and indulging in her eating disorder remaining in a college dorm environment far away. Now, could I control her at home? Probably not, but I have the right to put her in an environment with more structure so she has an easier time working her program. before bringing her home, though, I’d have to get really comfortable with my decisions regarding what I would do if she was using drugs while living in my house. And since I haven’t had to deal with the situation, I have no idea what those would be.