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

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HateEDwithApassion
Hi,
In reading posts, it seems there is a group of us parents who have teens that would normally be going away to college/uni in a year or two. And there's also a group of parents who sent or currently have a child away at college. And then others who have brought their kiddos back from college either permanently or for a semester/year to get things back on track before they went back again.

I wanted to start this thread to ask those of you who have experienced the college situation to share your wisdom, regrets, suggestions, advice with those of us who will soon be grappling with the decision.

What did you do that you would absolutely tell others to do regarding the college decision? What do you wish you had done that you didn't? What suggestions/advice can you share with those of us who will soon have to make that decision? What should we be doing now - 18-24 months before our child would leave for college? 

Hope you don't mind me asking this of you experienced parents, but I think it could be very very valuable to everyone to have these suggestions as a resource. Thank you so much!
19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
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Foodsupport_AUS
My D is second year university. She is now 19 and was 13 at diagnosis. She is still not fully recovered, but she is well enough that now only those she chooses to tell would know of her issues. D could not eat independently 2 years ago. All meals were still supervised even though weight was OK, she just could not eat alone at that point. So for us firstly the decision was that she had to go locally and live at home. Fortunately for us this was easy we live in a city with a number of quality institutions. Secondly with 12 months to go she had to learn to eat independently at school and also at home. She was aware that this was a requirement for attending so we spent 12 months working up to her learning what her body needed (she had no idea), and being able to eat freely from a variety of places without distress. We continued monitoring things right through starting university and she continues on with this. Our current work is on teaching her to cook meals which are appropriate for her needs, with good variety. She used to bake cakes etc. when much younger but was out of the kitchen for so long she didn't really know how to boil an egg. She cooks for the family once a week now. Hopefully this is giving her the tools she needs to live away from home in a few years. 
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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OneToughMomma
Dear HateED,

This is a great question!

We have only just begun our university journey, so I can't tell you how this will end, but I can tell you what we've done and how it is working so far.

Our D finished high school before she had finished FBT, and for us it was out of the question that she leave home.  She was technically WR or not far from it, but we insisted that she stay home.  Had she wanted to study locally we might have worked something out, but she set her sights on a course an 18 hour drive away.

She spent the year working, saving (kind of!) and FBT'ing.  It took almost 6 months to finish off FBT and get discharged from all of her clinicians.  She achieved her highest weight ever.  From that point she was 18 years old and officially well, so we 'let her go' and feed herself.  H and I debated stepping in when we saw her behaviours change and her weight drop.  Ultimately we decided to allow her to manage it herself, to a certain point.  She was shocked when we finally took her to be weighed and she saw she had lost about 3kg. 

She insisted she could fix it on her own, and we let her try for a month or so (two weigh ins if I remember correctly).  Then the light bulb went on.  She finally understood that she had to make a deliberate effort to maintain her weight, much less gain. We worked together and pushed her up to a reasonable weight, sending her off to uni less than 1kg below what I consider her absolute minimum safe weight. We were, on the positive side, seeing lots of evidence of good thinking, and she had gained at every single weigh in since we had begun to work together. I believe that was the blip she had to have.  She needed to try to feed herself before leaving home.

The safeguards we have set up include finding a GP who would do weighs and email us, having her in accommodation with supervision, RA's etc, and giving her our credit card for all food expenses (Food is not provided at her accommodation and she is too thrifty for my liking.)  She knows that we will bring her home if her weight drops.  She knows I will never allow her to compromise her health.

We had lots of talks about easy foods that would work for her, and I sent her with a suitcase full of Clif bars.  She is careful to always have food in her bag, and she tells me she sometimes leaves a long lecture to 'go to the bathroom' aka eat.  On previous visits to the city we had hunted out good cheap eats together, and she now eats out with her friends often. 

When we moved her into her room, we stocked her pantry, fridge and freezer with everything we could think of.  She has a kitchenette.  She had begun preparing meals and doing the shopping at home. I might have wanted her to be where food was provided, but there is nothing like that near her university. On the other hand, institutional food might have put her off.

I am happy to report that for her second weigh in with her new GP she has gained .7kg.  Of course I got the 'Is that too much?' question, but I think we will be okay.

My advice would be
  • that you should see consistent gain or maintenance before they leave.  I acknowledge that we were on the very lower limits of what we wanted to see before she left.  It was a gamble, and I was stressed about the decision.
  • You need a good clinician and the kids must understand how often they will be weighed and what you expect. They should understand the plan for getting back on track if they falter, and when they would have to come home.
  • If they have a kitchen, our kids need practice managing shopping, stocking a pantry (she's mystified at the rates that she runs out of different foods!) and preparing and eating their foods by themselves.  My d uses lots of pre-made, packet foods. If they have food provided they have to be able to eat it and manage portions and possible dislikes/boredom/whatever challenges that might present.
  • They need to be able to eat flexibly, eat out and eat with friends.  My d is very keen to eat with the others, and participate in the weekly dinners the residence hosts.  They sometimes get together in the communal kitchen to cook and eat together.
  • You need a place for them to live where there is a level of support.  At this age, the residence has said that they cannot contact me without D's permission, but they have 'flagged' her and will keep an extra eye on her.  I know if things got really bad they would step in.  I also am not counting on them to do so.  That is my job. I do think the social aspect of living with lots of other kids is great for our girl, and she has said she is glad to be in student accommodation rather than on her own. 
  • If you keep your kids home for an extra year after their peers have left, be prepared for some less-than-fun times.  Our d was stressed about getting her weight up, not getting her weight up, the move, her friends leaving, keeping her job, quitting her job, saving money... you name it.  We were all worried about her meeting the goals so that she could start her studies.  It was an awful time of stressed parents and a proto-adult needing parental support whilst at the same time wanting to be anywhere else but home.

I suppose the most important advice I could give any of us ED parents is don't let them go too early.  Taking a year off might not be fun, but it has been the right thing to do.  Had my d left right out of high school I am sure she would have fallen ill.  Just don't be fooled into thinking that kids MUST keep step with the herd.  Our kids have a life-threatening illness, and we have to make sure they are able to manage their health before they leave home.

xoOTM


Edit--One thing I forgot to mention is that d trialed going without her meds.  She worked with her psychiatrist and got off them, then decided she benefited from them and went back on.  I'm so glad she had that experience at home with our support.
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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Sadmom
My advice and experience, per usual, is slightly different because this illness does not strike every sufferer in the same way (although it is universally awful, that much is true).

My daughter had to leave her university just a few weeks into her freshman year, as she fell so ill she needed hospitalization. She was home for a full year (last year) in treatment and recovery, and eventually got a job and a boyfriend but did not return to school.

She maintained her weight just below (a pound or two) her range. She knew she could not go back to such a competitive environment so far from home, but had found a nearby university to attend for this year. We pulled the leverage card and said we would not pay if she didn't get her weight more firmly in range first, and she up and moved out. It was traumatic, to say the least, and I worried that she would never be able to eat properly when I wasn't there hounding her and that her health would be gravely in danger.

But she continued to go to her appointments and we made the decision to pay her tuition (she had gotten some good scholarships too) anyway. I know this is an unpopular decision, given that she did not do as we had required, but we wanted to help her get her life back on track. She went back last fall, lived in the dorm, got involved in campus activities, and earned a 4.0 for the semester. Oh, and promptly lost five pounds. We thought she'd need to be readmitted.

But, on her own, she has clawed her way back and regained those five plus another two. SHe is the best weight she has been in two years.  Her mood is better as well, as is her relationship with me. 

For my daughter, she needed hope for a future, friends, activities. She needed to see that there was something to live for beyond being a patient and being an eating disorder (this is how she describes it).  She is definitely not fully recovered, but is on her way we hope. For my daughter, leverage was an epic fail and trying to control her food was the worst thing I did. Both of those things nearly destroyed our relationship. But quietly supporting and believing in her, supporting her return to a less competitive, local college where she could keep her medical team, be near us, her boyfriend and all her support, was the right decision. I dare say she is thriving.

She had talked about wanting to go back to her original school this fall. We knew she wasn't ready, and would not have supported her being so far away. All on her own, she came to the same conclusion. Perhaps she can transfer for junior year, if she keeps her weight up and recovery going in the right direction.

So, each case is different. I think my daughter might not be as far into her recovery and our relationship might not have improved at all had we not supported school. However, I am in favor of being close to home and medical support until recovery is very, very firm. I think being in school, even part-time, having a job, etc. is very important for recovery too, for some sufferers,  if they are not medically in danger. 

There is no one-size-fits all, and when I look at the criteria on Sarah Ravin's blog (which I read a million times) my daughter was 100% not ready for school. But the alternative of another year on the couch with myriad appointments as the only thing in her week...that seemed worse. So we took the risk (and I stress that she is geographically close, which made the risk seem much, much smaller). We don't know how it will end either, but are hopeful for the first time in a very long time.

Everyone's mileage varies. Best of luck to all of you trying to sort out these difficult decisions.


Sadmom
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OneToughMomma
Sadmom, you make an important point, that our kids all have different needs.

My d wanted to go far, far away, so we had to have rigorous standards.  Had she wanted to be closer, like your d or Foodsupport's, we would have negotiated differently. 

That time you are describing of your d on the couch and myriad appointments sounds a bit like our d's gap year.  Not as bad as the initial refeeding, of course, but a very unhappy in between place. 

I'm glad our 3 d's are making their way through these transition years.

OTM
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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Sadmom
My D also had the year on the couch (last year). I would not want to repeat it. It made me so sad to see her like that. I felt she had lost so, so much.

My D did not want to be close to home, and is very adventurous. She is now making noises about doing a semester in "Timbuktu" (i.e somewhere far away) next spring and I just nod and smile. We have to wait and see how things go. I know better than to try to overplan now. We take it a day at a time.

Glad these girls are all doing better. 
Sadmom
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momof4_US
I have posted about my daughter's college experience and pulling her out of school twice from school three hours away.  For us it was a disaster.  She was not fully weigh restored and at the time I thought the leverage of pulling her out if she could not keep weight within range at the time she would come home.  She limped through the first semester and then really became unhinged.  The stressors were too great and ED behaviors escalated and then came the depression and anxiety.  Hindsight:  my daughter was not ready to deal with being away from home without the support of family.  Wise ones here posted that "college is for the healthy".  I so wanted my daughter to have the "normal" path in life and I think veering off that felt like a failure to me.  If only I knew then what I know now.  After pulling my daughter out of school three hours away the second time after having taken an intentional overdose of meds. I told her college was off the table unless she attended somewhere close to home.  She commuted one semester. After that she moved on campus but only 30 minutes from home and 15 minutes from my work.  The first year of this I saw her several times a week driving her to counseling appointments or to work.  This seemed to have worked having her close enough that she can come home if needed without interrupting her studies.  It has not been smooth sailing as I know she has had some pretty poor decision making but this is more about testing the waters of adult life.  At least I am close enough to swoop in.  I think this also helped my daughter just knowing that the support was a few minutes away if needed.  Initially when sending my daughter off to school out of state I thought I had a good plan in place.  I found a good ED therapist who weighed her weekly and was very available to her for support outside of appointments by phone.  Unfortunately my daughter was not healthy nor robust enough to thrive in that college setting hours away from home.  My greatest lesson learned was that I needed to put my daughters health first and foremost even if it meant veering from the expected time-line we had planned on.  It has not been easy re-adjusting expectations time and time again but, I can honestly say that progress has been made.  Sometimes one must look at how far one has come to fully appreciate the journey.
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mom29houghs
We are towards the end of DD second year of college. Honestly I have no idea what the "right" thing is. I agree that it depends on the child. Her first semester of school, we lived about two hours away. She struggled at first, but at that time she was ok weight wise and our PCP had signed off on it. So we let her go. About a month after she started school, I started to see other concerning things. She was caught underage drinking. (This had NEVER happened before. This is just not her.) My husband also took a job at her university. He was seeing her everyday, which helped and she found a good group of friends. She finished her freshman year doing great. (at least that is what we thought.) At the beginning of last summer we moved the two hours to the city that the university is in. Because of this she is living at home now and it has become very apparent how much she actually has been struggling. She is a master at deception and has pretty much been able to hide how bad things have gotten, until this Christmas break. All of the old eating habits were coming back. The restricting, the excessive exercising. I had no idea that she was also throwing up and taking diet pills and cutting. We are in the middle of a huge mess right now. She goes to school each day and pretends that she is eating lunch, but I have seen her pack 3 pieces of lettuce and 2 baby carrots for lunch. Seriously???!!! But she doesn't eat it anyway. It is almost like now that we are really aware of how much she has been struggling, she just doesn't care about trying to pretend any more. She is completely ignoring all of the guidelines that we have set up for her to follow. If this semester wasn't already half way over, I would yank her out now. Honestly if I can get DH, on board we still might. We are in the process of getting her set up with new doctors (stupid 2 hour move) and establishing a treatment plan. She is 100% unwilling to cooperate. But we will move onward and we will keep fighting.  So after all of this blabbing.... I say go with your gut. You know your child the best. There are so many conflicting feelings. You can only do your best. Love to you!
20 AN D- dx at age 14 2010, IP, FBT, Individual therapy, medication for anxiety and depression. Currently relapsed: anorexia, bulimia, cutting, excessive exercising, abusing diet pills...
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Calm_USA

The college/university decision is such a difficult one to make particularly as we all know what is at stake if things go wrong.  I come down on the side that college is for the robust and our d, now in the 2nd semester of her Freshman year at an out of state university agrees.

Our d dreamed of studying zoology.  She has always been very resourceful at figuring out ways to fulfill her dreams. We utilized that resourcefulness and determination to get her to a point where we felt she could handle college.  The summer before her senior year in high school, while she was still not yet weight restored and was attending an IOP program, I took her to visit a number of colleges we had identified as having the program she wanted.  Seeing the schools gave her a goal and helped to push her to weight restoration.  I remember during that trip she even tackled some of her fear foods. She was weight restored by the end of the summer.

We continued to leverage her desire to go to college throughout her senior year in high school.  There were times we really doubted we would be able to send her. Depression and anxiety were big issues. Fortunately we have a wonderful psychiatrist who has treated her for pre-existing anxiety for a number of years.  He adjusted her medication and d began working with a terrific therapist.  Weight also increased around 15 lbs above her previous target (which had her on her historic growth curve). That is when we really began to see true positives.  She was eating freely, maintaining the additional weight and utilizing good coping skills (DBT) to maintain equanimity with the stresses school, cheerleading and the drama production.  Those were the behaviors we kept working on.    Other behaviors/skills we strived for were expressing feelings and asking for help.  We needed to feel confident she could recognize that she might need help and then be willing and able to seek the help she needed.  On her own she also “went public” about having an eating disorder.  That willingness to speak about her disorder has served her well.  She doesn’t let herself be defined by the disorder.  She has come to accept that she will always have the propensity for the disorder and needs to care for herself to avoid reoccurrence.

She was accepted with scholarships into her top two colleges.  After some deliberation she agreed that her first choice – a VERY competitive college – was not the right fit for her and we went with her second choice which has proved to be very beneficial as she was admitted to their honors college and selected for a Scholar’s Program.  This program has provided her a core of friends and support as well as some incredible learning opportunities.

She continues to maintain her weight even with become a vegetarian.  NO, I was NOT pleased with that decision on her part.  I understood the desire.  She’s a zoology major after all! She’s surrounded by idealistic, passionate young people. She didn’t go fully vegetarian until she was home for Christmas so we had a month long opportunity to see that she was getting good nutrition with the right amount of protein, carbs and fats.  I also send care packages stocked with peanut butter, nuts, Cliff bars and such. 

There are bouts of homesickness, times when she feels overwhelmed with work.  Those are natural for a college freshman.  She is handling them.  She is happy.  Two weeks ago marked the 2 yr anniversary of her going into residential treatment for anorexia.  She posted a big THANK YOU for everyone who helped her to recover as “I wouldn’t be where I am now, living my dream, if it weren’t for all of you.  I wouldn’t even be alive.”

Each child is different and the way ED affects them is different.  For us, having her healthfully robust greatly diminished the worry of sending her off to college. 

Mom of a 19 yr old. RAN diagnosed 1/2014. Residential, PHP, IOP. W/R since late summer 2014. Now in remission and thriving in her second year at university. My Faith remains.
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heartbrokenmom
Being that hindsight is 20/20, no way/never would have tried that.  She got sick in first year college, restarted college several times with disastrous consequences.  We did not follow the expect advise we were being given that college would be bad for her.  We wanted so much for her to get her college education.  But, stupid me, what good is a college education if I don't have a living daughter.  I just didn't understand then.  And I feel especially guilty because those couple of years where we encouraged her to try college again, really allowed her ED to plant itself firmly in her.  I can't help wonder if the outcome would have been better had I listened to the experts.  Oh well (sigh) another lesson learned.....
Heartbroken Mom
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deenl
Hi heartbrokenmum,

We all live and learn but your honesty has allowed us to learn from your experiences and will absolutely help others. Thank you.

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

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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HateEDwithApassion
Thank you to all of you. Today was the first day my H and I kind of both came to the same place that it's very unlikely that our D is going to go away to school the first year. We both have tried not to think that or say it because she's only a junior now, and there's time. However, I can't imagine in 18 months that she will be in a strong enough place to live on her own. She's struggling to say afloat and we are with her all the time. Sad and scary to hear the stories, but good preparation for us to adjust our expectations for the next two years. Why is that so hard to do?  


19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
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GiveMeStrength_US

Every child is different and not all experiences may be relevant, but I will tell you ours. D was diagnosed at 16 and in-patient as a junior in high school. We began FBT when she was 17 and continued that through her first semester of college.  We made the difficult decision not to let D apply to schools that would cause her to live on campus - she had made applications "just in case" she was doing better and, thankfully, did not get into her first choice (a disaster at the time for her personally, but made the decision easy for us).

She was weight-restored by the time we made the final decision she could attend school and had been for some time. She was doing well in FBT although it was a close call as to whether we thought she was really ready. Our FBT, whom we trusted very much, gave us a structure within which to try it - D would live at home and only go to school to attend classes (we had to lease a car for her specially), she would continue FBT that first semester and for however long necessary, she would see her DBT weekly and continue to see her psychiatrist for monitoring sessions.

She made it through first semester, not perfectly, certainly there were some ED issues, but, on the whole, she was fairly successful in that regard. This led us to allow her to live on campus for a few nights a week second semester - kind of a hybrid between living at home and making that transition. I want to fast forward at this point because my D's struggles really began that summer.  Every semester she fell apart around finals time - her anxiety and depression would get the best of her.  That summer, I really think her issues morphed into a far more complicated mental illness - as her ED became less of an issue, these other issues took over and it led her to some very self-destructive and reckless behavior that we only found out about later on.

She went back to school for her second year, this time living on campus (again, eating and weight a non-issue), but returning home weekly for DBT sessions and alternating weekends. Things really went downhill fast the end of that semester, cutting classes, self-harm episodes, dysregulation, etc. So much that her team recommended an in-patient stay over winter break. At this point, we were ready to pull the plug on school - it was too much for her. She took herself off meds, couldn't function properly, wasn't stable.  The in-patient team treated her for a month and said she could have a second chance - we listened and tried, but it was like watching a movie for the second time as she repeated the pattern at the end of the second semester.

We were terribly sorry, but college really cannot be enjoyed as an experience and an opportunity, as it should be, if you are not healthy or ready. While we had confidence in her ability to deal with her ED and that actually DID get better over her first year as she "graduated" from FBT and moved forward, her co-morbids became more of an issue.  This may not be true for everyone, and I'm not sure we would have done anything differently given the circumstances.  Perhaps we would not have let her go back this past second semester - that's about the only fork in the road I can point to and say we did the wrong thing.

I would just strongly advise you to go with your gut, to ensure your child is stable, healthy, functioning - it's like going back to play a sport after breaking a limb - if the bone hasn't fully healed, it's weak and susceptible to re-injury.  These kids have their "go-to" coping mechanisms - ED is one of them - in distress, which comes so much more easily to them than others, it can be very triggering and activate the ED (and other issues).  A test, a social situation, anything that pushes their buttons. It is scary, but we want them to be able to really benefit from the experience and sometimes they simply are overwhelmed by their issues and cannot.

Good luck.  Great topic.  

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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HateEDwithApassion
I so appreciate all of your replies. So many of the stories sound the same. Clearly, if an ED young adult goes off to college right on time, it seems that there are usually issues, and sometimes severe ones that make things much worse. 

I guess the key thing I'm hearing is that college away from home is probably not advised unless the teen is strongly recovered for several years at minimum. And that baby steps, like taking classes locally and living at home or living in town on campus where monitoring is happening constantly is advised. Tough to continue to adjust our hopes for our D's future, but it must be done. Not easy though. And she is clueless that this is the likely scenario. Gosh - I really truly hate ED and I hate mental illness. 

Thanks. [smile]
19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
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deenl
Hi everyone,

This is great information for the future. The themes I am taking out of this are:
  • YAs who are well for a while and have really good plans in place are most likely to thrive and move on in their lives
  • It can be used as a motivating goal during recovery but only well in advance so there can be a year or so of health first.
  • Kids whose recovery is shaky or who are unwell should focus on health first.
  • Our kids do not need to go through education step bu step with their age peers. They are recovering from a life threatening (or quality of life destroying) illness
To all closer to this stage, I wish, above all, health and also happiness with their next steps,
D

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

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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gobsmacked_US
My d was dx'd at 13, we refed her, she maintained a healthy weight for four years and without much in the way of ED habits for at least two years. She went to a college in the fall, as planned, and promptly started losing weight.  We spent the last few weeks of the first semester and all of the winter break putting a plan in place -- she went back with a contract with the school (weighed once a week, and if she went below a certain weight more than two weeks in a row, she'd be out on a mandatory medical leave of absence), a new therapist, and lots of support. She wasn't able to maintain the weight and his home with us now. It only took as long as it did because she was waterloading.

I'm still in the middle of this and don't feel like I have much insight to share. A few random thoughts though --

1. We never found a good therapist for her when she was younger. I interviewed just about everyone in the area, and there was no-one suitable. The therapist we did see was a support to me and my husband but not a great fit for her. So we refed her on our own, with support from here and the therapist, and then tried to push forward on our own. I am pretty sure now that she really needed therapy. I have no idea who she would have seen, since at the time I couldn't find anyone, but the right therapist might have been able to help her get past the ED thoughts that were still there. I can't beat myself up over it since we couldn't find anyone, but it upsets me. Fortunately a good therapist moved to our area in the last few years, and my d is seeing her now. I just hope it's not too late to get rid of the ED thoughts as apparently they were more deeply ingrained during the two years of "full recovery" than I had any idea.

2. Much as I am upset by everything that has happened, I don't regret that she went to school. It brought the problems that were still there to light, she has had to face the fact that she can't get better on her own, and because the school got involved she knows now it's not just me and her father who "are trying to make her fat," etc. Knock on wood, her desire to get back to school is good motivation to her to get into recovery. In addition, we had a few months without her living at home to see how much ED had still been part of our lives over the years even though we thought he was gone. I feel guilty that we enjoyed those ED free months so much because meanwhile she was falling back down the rabbit hole, but they were almost blissful.

I'm still trying to get a handle on all of this. My username suits me again.
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Psycho_Mom
Hi Gobsmacked,

I'm so sorry. How terribly difficult, and terribly confusing.
Please know that it's helpful to me (and probably others) to read your story and your analysis of what may have happened.
IF you don't mind, I have some questions. When you say she maintained a healthy weight for those four years, did she keep gaining for growth?  And by "without much in the way of ed habits" do you mean there still were some, and if so, what were they? How did you manage to get a contract with the school? What does that look like? 
It sounds like ed went underground, not apparent even to parents familiar and on the look out for it, and that worries me for my own d of course, so I'm trying to learn. 

Thanks for posting, I hope things turn around soon for your d. I read somewhere, perhaps on this site, the idea that a relapse is necessary to get to a full understanding, appreciation and achievement of recovery. I don't like that idea, but I think there may be something to it. There may be something positive that comes from relapse. Or at least, it may be possible to make something positive come of it.

best wishes,

D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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skechers
Gobsmacked, can I echo what Psychomom said. Your insight and thoughts will be helpful to us. I believe Psychomom and I are along the same timeline and have d's coming up on college this year or next. Trying to make the right decisions on whether they are ready to go and how to protect them if they do.

Also, I think somewhere I'd noticed you may be really close geographically to me. Please fee free to email me if you want to talk or anything. Must be a tough time again for you.
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Kali
Hi 

Well we have had two kids with mental health issues which came up around the time of college.
Different of course, one is Ed d. and s. had other issues.

S. is in college very close by and can come home on the weekends. We see him often. He was able to stay in school even though he was really not well for awhile. With our support and some short term medication and therapy (and some genetic luck) he was able to get through the crisis which lasted for about a year and he is now doing very well. If he had been at college far from home I would have brought him back. A month after I started to relax and realize that he was in fact in remission and that recovery was a real possibility for him, ED entered our lives with our d—her senior year in HS, after she had already been accepted to her dream school.

D had therapy and seemed to be doing well and was eating (although not as much as she should have been) and not at a dangerous weight and was excited to go to college, so we sent her. D. went away and did not eat and we had to bring her home right after Thanksgiving. She is currently in Residential treatment on a MLOA. 

I can only console myself now with the thought that it might have happened anyway when she left home whether she was 18 or 28 and maybe it took this crisis for her to really understand that she needed to go into residential treatment and become weight restored and continue therapy afterwards and try to achieve a real remission. She knew it was not working and called us from college to tell us she needed to go into residential and then followed through on that. It was scary and sad and I was frantic with worry and busy calling treatment centers to figure out what might be the best fit. She took our advice and went where we wanted her to go. She keeps saying she wants to get well and go back to college however in the next breath tells me I am always trying to get her to eat too many calories...so the ED thoughts are still very strong...sigh. But after residential, she will be staying home with us for the near future for as long as it takes. She thinks that she is going back next fall and we will need to have the difficult conversation with her over the summer if it becomes apparent that it is not a good idea. I do have a friend who brought her d. home the first semester with ED, and her d. went through treatment and returned in the fall and is ok even though she had a couple of minor setbacks; she is going to graduate this spring. It is possible however everyone is different. The program she is in is really working hard to try and empower her to follow her meal plan and be the most important partner in her recovery. (With, us, her family, as the most important partners in her support, since she is a YA not a child) We lost the money we paid for her room and board since we do not get reimbursed for that and she got no credit for the semester, just W's. They did say they would hold the tuition we paid while she is on the MLOA but she would need to be well enough to go back and redo the semester....so we may end up losing that also if she is not. Or sending her back with fingers crossed and support in place so that she can somehow complete that one semester so she does not lose those college savings, and then encouraging her to transfer somewhere close to home. D was a national merit scholar with a high grade average and test scores in the 99%. She took 8 AP courses and scored high scores on all the tests, and entered college with 1.5 years of college credit from them. She had earned a generous partial scholarship and admission to the honors college of a very selective school while holding a part time job and being active in clubs and having an active social life with friends. She was so highly competent, thoughtful and intelligent that I think this lulled me into thinking that she would be ok. It NEVER EVER in my wildest dreams would have occurred to me that she would struggle so much her first semester that she would not be able to complete it. I think back on the girl I thought she was during high school with acute and absolute disbelief when I compare her to the girl she is now. The girl I thought she was in high school was a carefully crafted facade while underneath a dangerous and life threatening illness was taking hold of her which she kept a secret for as long as possible.

So HateEd with a passion based on my experience with both kids I'd recommend that if your d. is well enough to do her school work and wants to go to college, can she go to college somewhere close to home, either living at home the first semester or living very close by so that you can stay in close touch with her? 

and Gobsmacked, I'm hoping for the best for your daughter since we are in similar situations. I feel the same as you, that it brought the problems to light and I am glad that she got serious about it and went into treatment. I hope that things will get better for both our d's and that one day we will see them graduate from college and living lives free of ED. 

I keep repeating to myself: People DO recover from this. People DO recover from this. People DO recover from this. Trying to drown out my inner voice which is saying This SUCKS This SUCKS This SUCKS.

Kali
Food=Love
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