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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Foodsupport_AUS
Just arrived back from the conference last night. Many thanks to all the organisers who put in so much work to get the conference off the ground. There were numerous attendees, mainly parents with children who had been ill for only a few months through to been ill for 27 years. Siblings, and sufferers as well. 
Many sessions raised tears to the eyes for not just me but numerous others. It was very clear how traumatized most families are who have experienced ED. 
We learned about FBT and some of the difficulties of getting it to work. The importance of a good team to help families (and how hard this can be for many people to get together). We heard from a number of people who have recovered from ED and heard a number of different journeys to get there. The number one thing I took away from the conference is that there is always hope. There is no one way to recover but no matter how long or difficult the illness there is always a way to recovery. 
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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lesleyh_AUS

I also have just arrived back from the conference a few hours ago and wanted to shout to the world that wonderful word as well-
HOPE.
It gave many of us a voice, a chance to tell our stories and realise that we are not alone. Many of those that attended had travelled form all parts of Australia as well as New Zealand.
The whole experience confirmed for me what resilience, determination compassion and love we share for our loved ones suffering.

It has given me a lot to think about the way H and I are approaching our D’s illness and assisting her in recovery.

I now have the confidence to continue on supporting her as I was starting to run out of steam.

It was an amazing experience to meet such wonderful, loving people with whom we can unite together to get the message out there about lack of funding, lack of GP knowledge and support, lack of consistent evidence based care, lack of respite care and the list goes on.

Thankyou to the organisers and for those ATDT parents that I was finally able to meet and put a face to your stories from this forum. 

“A diamond is a piece of charcoal that handled stress exceptionally well.” – Unknown
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boomerUSA
That's awesome!  I hope one day I can go to a conference too.  Hope is all we need to keep fighting.  Reminds me of my post that started last year called , A happy moment of hope.   That little glimmer I had that night a year ago helped me become stronger and more determined!    

Your messages of the conference keeps us all "hopeful!"

Thanks for sharing
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Goingtobeatthis_AUS
Am not home yet to provide a full account but wanted to let people see the news story we got promoting the conference beforehand http://www.abc.net.au/am/content/2013/s3765467.htm

We got national radio and TV coverage which I hope will give other families unable to attend a positive message.

Also conference sessions were filmed and will be a available in a few weeks once edited.
Belinda Caldwell FEAST Executive Director. D 21 now well into recovery after developing AN in 2011. Inpatient 5 weeks, FBT and then just lots of time, love and vigilance.
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Foodsupport_AUS
GTBT hope you have a good trip home. I am looking forward to seeing those bits from the "other side" that I missed, and hopefully those unanswered questions? Now of course to get working on the wish list.
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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LisafromAustralia
Congratulations to the organisers. Although I was unable to attend, am looking forward to catching up with the Melbourne girls to get all the goss!
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nornor
I was so impressed with how well the conference was run - from registration on the first morning through to the final session yesterday afternoon. I thought all the speakers did a wonderful job of presenting their information in a way that parents and carers could relate to. The presentations were interesting and the speakers were very willing to take questions both during the sessions and in the meal breaks.
Whilst I did shed many a tear over the last couple of days, I did walk away with a sense of hope and a stronger belief in full recovery being absolutely possible. I know many other parents left the conference also feeling like this.
I really hope this conference is the start of some real change in this country in the area of Eating Disorders. We need increased funding, improved education for healthcare professionals, greater public awareness and education and greater access to inpatient care.
Congratulations to the team from Feast and the professional bodies who supported this conference .
Tracey Hayden
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MarcellaUK
Brilliant news - so exciting and HOPEFUL. Thank you to the team who worked so hard to pull this off.
Fiona Marcella UK
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perdido
Isn't it cool!!!!!!???!!!! I went to the conference in Virginia in November and came back so pumped with information and HOPE!!! Hope for us all, healing for us all, love for everyone!!! This disease sucks, but the friends I have made and the trust I have for the folks who help me, awesome and priceless! Love to all!
Slow and steady
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Goingtobeatthis_AUS
OK- have now rested up and am back at the computer!! And am now able to reflect on the wonderful couple of days which were the At Home with Eating Disorders conference. I will reflect on the sessions from my perspective but they will be available through the FEAST website in the next few weeks.

For me the first fabulous thing was the Janet Treasure pre conference workshop which was attended by around 150 parents, family members and carers. My first feeling was a sense of being overwhelmed being surrounded by our trauma multiplied by 150 and that sense of the battle-worn was pretty palpable. Janet's presentation included a range of material on the brain traits of those with EDs and in particular AN and I have to say, she was describing my d to a tee.  This again was quite emotional for me as I have grappled with a sense of things that everyone else around me saw as fantastic traits, causing me disquiet and not being able to put my finger on it since she was a toddler. Seeing it described as a set of traits was very affirming for me. Some of Janet's stuff on how to support sufferers was a bit passive for me as Maudsley survivors - but I learnt some really useful skills for managing d now. A stand out message was the challenge AN sufferers have in seeing the positive or warm/compassionate feelings in others and therefore the value in showing extra warmth than one might in usual family settings. 

The next morning we kicked off with a podcast message from our Federal Minister for Health which really broke the ice, not because he said anything overly inspiring but because the AV didn't work and he introduced himself 10 times before we sorted it out - each new introduction brought out peals of laughter and am not sure any of us will be able to look at him seriously again LOL. Our first presenter for the day Daniel Le Grange was introduced by Tim Bonnin (husband of FEAST Board member Bridget) and he was so moving - instead of listing Daniels qualifications, publications etc, he outlined thier journey and the impact of Maudsley on helping them help their d to recover. 

Daniel was amazing to hear in person- so gracious, empowering of parents and outlined/put the case for Maudsley well. He is an absolute gentleman and so easy to listen to! 

Daniel was followed after morning tea by a choice of a session on adult treatment or a session on child treatment. H and I split this and I went to the child session even though d is now 18. Boy was I glad! I could have listened to Andrew Wallis from Children's Hospital Westmead (Sydney) for days! We did Maudsley with a team who were relatively new to the approach where Andrew and his team have been doing it for a long time. The nuances he was able to describe to the approach was fantastic to listen to and I took away as a main message from that, that our slower than 'normal' approach to letting loose the strings made sense for our d - and that as parents we need to be confident to make our own judgments. He highlighted the importance of restoring our children back to where they should be on the developmental route towards independence but we need to exercise judgement on what our children are ready for. Not sure if this is what he actually said or I interpreted it that way. 

After lunch we had Cindy Bulik who was another awesome speaker (I was beginning to feel utterly humbled to be in the presence of such eloquent, honourable and amazing people, parents included!). Cindy spoke about the new ANGI study looking at the genetic makeup of those with AN and the importance of this work. She then spoke about midlife onset EDs and then about working with couples where one partner has an ED. It was all super interesting even if my energy levels were starting to fade at this point.

The final session for Day 1 was a "meet the Expert" where a very inexpert me was included on a panel with Daniel, Cindy, Janet and Christine Morgan (CEO Butterfly Foundation). Families and carers were able to pop questions in a question box- we were overwhelmed with questions and then even more overwhelmed with the desire to ask questions from the floor. What stories - several families with more than one child with AN, people with newly diagnosed children, others with family members who had been sick for in one case 27 years, families of very young girls and boys - the full gamut. And a lot of very frustrated families and carers who are not currently being listened to or being given evidence based treatment. we managed as best as we could but it was pretty overwhelming. The sense of unmet need in the room was huge and left me a bit concerned for the next day!

Dinner that night was a good chance to debrief, chat and relax after a pretty intense day. 

Day 2 commenced with Janet Treasure with a truncated version of her pre-conference workshop but with more research evidence and some snippets on upcoming treatments which are showing promise. She talked about a trial looking at the use of oxytocin in adult women with AN which is showing quite remarkable results so far - the theory is that increased oxytocin results in people experiencing more warmth and trust with others - which maybe counteracts the negative messaging in their brain, enabling them to better listen to what treatment providers or family are saying to them . Someone more scientifically disposed could probably explain better. 

We then had an amazing session where treatment professionals interviewed families in their care or carers spoke. If you get to watch one session of the conference, watch this one - very moving, hilarious accounts of the refeeding process which were all the more moving because of the spirit shown by these families. Of interest, on therapist from Westmead showed a process they are researching where a family new to Maudsley and a family who have been through it have a session together with the therapist early on in the new families journey - brilliant idea and would have loved this!!

We then had a session which I chaired on Where to from here where I got all sorts of families and carers to outline what would have made their journey easier of what was good about their journey which should be readily available for all. This was very productive and we got a long list of areas for advocacy. we also got a commitment from the Butterfly Foundation to work with FEAST to develop this into a position/letter for politicians etc. 

After lunch we heard from Stephen Touyz on "is recovery from anorexia possible" where he outlined a recent study he had undertaken looking at long term AN sufferers who had recovered and what was the tipping point, and the need for clinicians to continue to support long term sufferers until they get to this point. He also outlined a study published two weeks ago that eh has done, looking at providing measure to support quality of life in severe and enduring AN - where supporting QOL actually resulted in weight gain for this group and improvements on most aspects of living they were looking at. While hearing this stuff was difficult for those of us with adolescents and aiming for full recovery ASAP, it was very important for our attendees with long term sufferers. And again made me think what amazing compassionate clinicians we have heard from throughout this conference. 

We finished off wiht a session hearing from 4 recovered sufferers,  who had had AN. BN, and midlife onset. And one AN sufferer was a young man. So a full spread of EDs! Fabulous gorgeous people with amazing stories. Of particular interest for me with the midlife onset of AN for this mum of teenage children - the support available for her family was so poor as to be outrageous - her daughter told her later she would have preferred her mum had cancer as everyone would have then rallied around and helped out. this session finished off with a text one girl had sent her mum the night before, thanking her mum for saving her life, getting her through this and how much she loved her. Not a dry eye in the house!! 

I now have a new research hypothesis - one risk factor for EDs is parents who are smart, articulate, brave and persistent. The conversations, questions, comments all showed families and carers to be thoughtful, insightful allies in their loved ones treatments. The clinicians who attended including our speakers were all so inspired by everyone there. 

What next? Yet to be decided. However, we have forged a great collaboration between FEAST and the other organisations involved in the conference which I am sure will lead to bigger and better things. We will debrief in the next week or so and see where to next. If you have got to the end of this essay- well done

Belinda Caldwell FEAST Executive Director. D 21 now well into recovery after developing AN in 2011. Inpatient 5 weeks, FBT and then just lots of time, love and vigilance.
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hayleysmum_nz
A few of us attended from New Zealand, what a wonderful, inspirational and at times emotional experience! We were so glad that we made the trip over. Met some amazing people and we are all stronger for the experience. We have all arrived back invigorated and with so much hope! Well done to everyone involved.
xx
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Noodle
Thank you Goingtobeatthis - great summary and I wish I could have been there. Will all the sessions have been filmed? I think I read somewhere at DVDs would be available for purchase at some point.
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MarcellaUK
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I now have a new research hypothesis - one risk factor for EDs is parents who are smart, articulate, brave and persistent.

LOVE IT
Thank you for this report and I will be looking out for the sessions on the FEAST website.
Fiona Marcella UK
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Charlotte_UK
Fantastic news and SO glad it was all so helpful.  For those of you on FB, Jennifer Marsh has posted some great photos.
Mother, wife, farmer, C of C and M Productions
http://www.youtube.com/user/CandMedPRODUCTIONS#p/u
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Goingtobeatthis_AUS
Noodle- DVD at one cost and a link to a website where you can view all the sessions but not sure if cost attached to that. More details soon.
Belinda Caldwell FEAST Executive Director. D 21 now well into recovery after developing AN in 2011. Inpatient 5 weeks, FBT and then just lots of time, love and vigilance.
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josiejo
Thank you so much for posting such an interesting summary Goingtobeatthis! Really appreciate it and look forward to reading more!
Keep fighting the good fight!
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perdido
Wonderful summary, the conferences are soul filling.
Smart, articulate, brave and persistent! Whoop!
Slow and steady
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Goingtobeatthis_AUS
Just bumping in case anyone missed it from AuStralia or New Zealand or anywhere really
Belinda Caldwell FEAST Executive Director. D 21 now well into recovery after developing AN in 2011. Inpatient 5 weeks, FBT and then just lots of time, love and vigilance.
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WilmaAu
I too loved the conference. I found it to be far better than I expected, which was very pleasing. I usually take my knitting everywhere in case I am stuck somewhere a little boring. I am happy to say that the knitting didn't make an appearance once! So I would like to thank the organisers for this. I found the presenters well prepared, engaging and empowering. There was no talking down or feeling of superiority. And the food ( including the dinner) was fantastic, so nice to eat and be satisfied away from the rules and regulations of home!

My only problem with going to the conference was this. I left behind a family of five children and a disabled husband (I am his carer). I found that having put down my bundle for a few days, and finding I really was enjoying some time out, peace and quiet, and while at the conference, some mental stimulation, I really did not want to pick that bundle up again. My children all keep telling me hw much they missd me, and our youngest has become quite clingy, but I cannot tell them I didn't miss them. Not because I don't love them or because I don't want them around, ( I am one of those who love school holidays over term time) but because of carer overload! So, not the conferences fault at all! Needless to say. I returned home on Tuesday, and with the encouragement I received at the conference, I have picked up that bundle and am just getting on with it.

Thankyou Goingtobeatthis_Aus for the summary of the conference. I took lots of notes and reading the summary is helpful for putting them all in order in my head.

I can relate to the sentiment that the family of the adult sufferer voiced, that there would have been more support if the mum had had breast cancer. We find this too. Most people we associate with just are not in the need to know category. We also experienced this when my husband had his stroke. Apart from some who were very supportive (our children's school was wonderful) and some very dedicated friends, most people had the attitude that this was something he brought on himself so he and his family and children were not deserving of support. This left us to battle it out on our own but leaving a bit of a wreck in it's wake, including one daughter with AN, anxiety and self harm issues, and another with depression. It seems that peoples capacity to care and be supportive is biased by their own view of how the illness has occurred.

We are also frustrated by the lack of funding for treatment which was raised at the conference. It seems there is a great deal of waste in our health system. Ie providing only 10 sessions of therapy, when a few more could prevent a more expensive hospital admission. We also experienced this type of waste in the disability sector. There were people at our rehab centre waiting many months in rehab, some a full year, at $1000 a day, because there was no funding for home modifications which would allow them to return home. For many of these people their finances were in ruin , and in our case, we did have insurance, but it took two years to pay out. There are many other examples of such waste in other areas as well. I would like to see a politican address some of these issues rather than just cutting budgets.

So, Thankyou once again to the organizers. It was well worth the time and effort to go.
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Chocolate
Thank you Goingtobetthis_Aus for your report on the conference, I am looking forward to seeing the conference online. I would love to hear what Janet Treasure  had to say about  "...the challenge AN sufferers have in seeing the positive or warm/compassionate feelings..." . I wish I could have been there, I have attended the two conferences in Alexandria and they were very empowering, and as I put it "the best therapy ever"
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