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

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sk8r31

Hi All,

I will be a co-presenter at the Academy of Eating Disorders International Conference on Eating Disorders (ICED) in May.  I’m presenting with an MD in student health services at a university, and a program director at a residential treatment center.

Our workshop title is:

Lost in Transition: A Practical Exploration of Perspectives and the Challenges Facing Patients, Treatment Providers, and Families During Life and Treatment Transitions

I’m completing my rough draft/outline on the benefits and challenges to parental involvement during transition times (the focus is mainly on young adults transitioning to/from college or residential care)

I would love to include some quotes from parents (1 or 2 sentences only) on any of these:

  • Benefits of their involvement during transition times
  • Challenges to their involvement during transition times
  • How peer support helped during transition times
  • How clinician/treatment support helped during transition times

I’m aiming to have quotes with an international flavor, and they can be anonymous, or first name only, or forum name, along with country

If any of your kids would like to participate, their thoughts are most welcome as well.

Here is my daughter’s quote:

“A benefit to me in having my parents involved was having someone to talk to about stress/ED issues, especially when trying to make friends and adjust to college life”

                                                                          --Martine, student, USA

Thanks for any help you might like to give on this presentation.  It is much appreciated!

Warmly,
sk8r31

It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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MarcellaUK
The WORST time for us was when our daughter left school. We knew, she knew, that she wasn't well enough to go away to college but even with living at home (even perhaps BECAUSE she was living at home with parents who were demoralised and afraid because of past failures at home treatment) she floundered.

What really didn't help was the number of transitions at the same time;
Losing peers who did go off to university elsewhere
Losing familiar and supportive teachers
Losing the only medical support she had, her GP (nothing to do with going to college, it just happened to happen at the same time)
Not being able to access specialist ED help because the onus was totally on her as a (very) young adult, to fight for scarce services and becuase service disruption during constant "service reconfiguration" made it almost impossible to find the service for a while let alone insist on an appointment

So, the benefit of family involvement - continuity
Challenges to family involvement - the insistence of medical services on MAKING d take on adult responsibilities that she couldn't face
Things or people that helped - the college tutor (who was GREAT) and staff who didn't bat an eyelid at parental involvement at what they could see was a serious medical condition
Fiona Marcella UK
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OneToughMomma
Our d has only just left for uni!  However, she is off to a fabulous start, and I can tell you what we've found so far.

Helpful
  • waiting as long as possible before sending her away.  She spent her gap year finishing FBT, working, choosing to get off her meds and then back on, learning to eat independently, losing a bit and then regaining.  I think this was an invaluable experience  That weight loss was the blip she had to have in order to learn how much she needed to eat, and that trial of no meds helped her to commit to taking them herself.  Because she was still home, we were able to step in and help her whenever necessary.
  • Having a psychiatrist who clearly supported us as parents.  He backed up our plan to have a minimum weight before leaving, create a very informal 'contract', and have a GP near her uni who would report to us.
  • We got lucky in finding the GP. I did do my research, but the highest recommendation I could find for any GP was from the Butterfly Foundation saying that this man had worked with ED's.  He is willing to weigh d and email us the results, and even throws in a little comment on how happy she appears.  He seems quite supportive of our plan, and I never got the feeling that he thought we were overbearing parents.

Not helpful
  • I am a huge, banner-waving fan of FBT, but I do think it let us down right at the end.  D was told not to diet.  Well, that means different things to different people.  It is pretty much useless to a barely-recovered anorexic.  I think she needed more guidelines about her eating. 'Make sure to eat one serving of full-fat dairy and one complete protein every day' or 'dessert every day' would have been great.
  • There is a dearth of either good practitioners or information about them.  I really struggled to chose a doctor for our d.  Surely there is a better way to communicate that information.

sk8r that's all I can think right now.  If I come up with anything useful I will edit and add it in.

Sincerely,

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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sk8r31
MarcellaUK and OTM, thank you for your responses!

It really helps to inform my presentation (for an international audience) to have input from the UK and Australia, in addition to what I have already from the US and Canada.

I appreciate you both taking the time to respond, and I will use your information in my presentation.  The clinician and treatment providers that I'm presenting with are very interested and willing and open to hearing parents' perspectives.  The more we can encourage and support open dialogue, the better for all I believe.

Thanks again...and anyone else out there with thoughts on transitions to/from college or residential care, it would be wonderful to hear from you too!

Warmly,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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JustFlippinEatItNZ
Parents are often as lost as the sufferers when it comes to parenting decisions. contact with other parents and advice from clinicians is vital,

Ensuring that there isn't a treatment void during any transition is really important. We had huge gaps, which wasn't helpful.
19yo D, AN since Sept 2014. Was wt restored for a year or two but now starving again, refusing treatment or to admit she has a problem. BMI guesstimate around 13 or 14. Has left home.
Very sad Mum.
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sk8r31
Thanks JFEI!  Good to have input from a parent in NZ.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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mjkz
An eating disorder is a family disease in which everyone suffers in one or another whether that be parents, siblings or the sufferer him/herself.

Every eating disorder is serious and dangerous.  One can only be a little eating disorder like one can be a little pregnant.

Never compare the seriousness of eating disorders.  Each is unique, life threatening and traumatic all in its own way.
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Colleen
We sent our d off to university a year after w/r with a firm safety net in place.  It would require her to be weighed at the Student Health Service every week.  She had to sign releases to give us access to her weight information.  While WE had a plan in place, it was difficult to implement.  At every stage along the way, university personnel tried to thwart it, from the receptionist telling our d, "You don't have to sign these releases" to the doctor who refused to give us the information even with the releases in place.  Universities need to be educated on how best to support their students with serious, life-threatening brain disorders like EDs.  I understand that this is a time to fly out of the nest for most kids, but this is not helicopter parenting...it's life-raft parenting.
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Foodsupport_AUS
We are surviving "just", with the transition from school to university. D is still living at home and is not ready to leave with respect to ED. She is now into her second year at university. I don't think asking her to take a gap year would have helped, there has been numerous positives from going, including making new friendships, learning to go out and socialise like a normal teen/YA. Things she had missed on as she has been so ill since age 13. 
For us the positives of parental involvement has been mainly continuity across the spectrum of carers that has changed as she transitioned from adolescent to YA care. It has kept the same message going from all care givers, still singing from the same book.

The main challenge has been allowing the right degree of independence in a young adult who although she acknowledges there are issues, struggles to challenge ED thoughts to enable her to be fully independent in decision making. 

Trying to keep clinicians on side, not to be seen as the helicopter parent but to be seen as an important support for D, with the best knowledge of D and her needs. Great and easy with one clinician, much tougher with another. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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sk8r31
Thank you mjkz, Colleen, & FS_AUS for your thoughts.  I will incorporate them into my presentation, and I appreciate the time you took to respond.

Warmly,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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thingone
One of the biggest most important challenges for parents/caregivers is to be on the same page! If you don't support each other than you can't be a consistant support for the patient. Also, making time for YOURSELF to RELAX and not forget that you matter too!
we will survive
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sk8r31
It is so true thingone that parents have GOT to put good self-care in place.  It is completely necessary, in order to have the strength, energy and commitment necessary to be able to care effectively for a loved one with an ED.

And as far as being on the same page...it took a long while....like close to 3 years...before H and I were totally in sync.  The combination of a united front, along with proper evidence-based professional backing, made all the difference for our d.

Thanks for responding,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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