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.

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Warrior1
HinAll I haven’t been on here for a while, but I saw this doing the rounds on the news today and thought I would post it in case anyone hasn’t seen it!😊

https://www.google.co.uk/amp/s/amp.theguardian.com/science/2019/jul/15/anorexia-not-just-a-psychiatric-problem-scientists-find
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blondie
A really interesting article - thanks so much for sharing!
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debra18
Yes it's baffling to me why my daughter still needs such a high amount of calories. I hope it will help treatment providers to understand they shouldn't back down on calories when kids reach a healthy weight 
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Mamaroo
I saw the news this morning, great that some proper research is being done. Thanks for linking the article.
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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kazi67
This is really interesting 
my d was always very skinny, and always active 
my guess is she always has a very high metabolism  
then when she decided to “go healthy” well we know the result 
she needed way more calories and thats when the energy deficit switched the AN on 
makes sense  to me
if only it was just as easy to turn it off 
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ValentinaGermania
Thanks for posting. The news are not really new, most of it was published by Carrie Arnold in her great book "Decoding Anorexia" already.
Keep feeding. There is light at the end of the tunnel.
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Enn
I think this is very exciting and to be published in Nature Genetics is truly a high point for these researchers! That is a very reputable journal and so the paper is well regarded amongst their peers. The point here is that they have identified 8 specific gene loci  that are associated with a few psychiatric and metabolic issues. This is the beginning of more research that can hopefully tie in which meds may be helpful for ED and other psychiatric/metabolic issues among other things. This is the springboard to more research. This leads to more understanding of these illnesses as a whole. I also think it helps the world to understand that EDs  are NOT a choice. It can help to wash away stigma about EDs. 
This paper is a landmark in the science of EDs and  it behooves us to communicate to our respective communities that good science for EDs does exist.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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deenl
Cynthia Bulik has a series of blogs on this. 
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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Enn
Those blog posts are great! Thanks deenl!
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Warrior1
I find all the science stuff really interesting and have been doing lot of research recently as I was thinking my daughter may have had PANS/PANDAS triggered anorexia.

I thought we were looking at a relapse in May as her behaviour changed and she became really oppositional at mealtimes would take a few bites and say she was done, we started having loads of battles again and weight gain stalled. We had a lot of other behaviours, anger etc and I was thinking here we go again and before I knew it I was exhausted making sure she ate everything. It got to that point when I just said ‘fine don’t eat I can’t fight with you anymore’ she then screamed at me to make her eat. I just got the sense it was the argument she wanted so I just walked away and she started eating again. She had become very fussy and selective but essentially we were still managing to get the food in. No compulsive exercising this time, but she was a bit overactive.

I realised that the start of the behaviour coincided with her complaining of a sore neck and I came across PANS/PANDAS. I got her tested and she has strep/Candida and raised ASOT antibody titres despite no obvious signs of infection. I went back to her GP records and also found that we had seen the GP a week before the onset of her restricted eating the first time, for an upper respiratory tract infection. She was prescribed antibiotics and nystatin and before the antibiotics were even finished she was reaching for the foods she had been avoiding again. This was without any encouragement from me.

At this point she was about 90% weight for height which I think was a result of her weight stalling and her growing about 4cm in a couple on months. Her other behaviours melted away and despite being at a low weight had no eating disorder behaviour except sometimes complaining of feeling full and having a sore tummy after meals. 

In the literature about PANS it is quite well documented the association between infection and the onset of anorexia and I hope as research progresses they will start to research more about the disease triggers as obviously just having the genes doesn’t mean that you will develop the illness. Hoping for all our children’s sakes that it doesn’t take decades to develop robust prevention and curative protocols.
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kazi67
I was really excited to see this on our local news on tv last night with June Alexander speaking 
my d even watched it and is fascinated too!

I know research has been going on but to have it on the news it’s just very exciting as people can start to learn about ED/AN and the stigma associated around ED’s will hopefully lessen as people realise that NO ED/AN is NOT a choice!
well done to all the researchers and doctors etc!!
hopefully one day even all the GP’s (who are usually the first line of contact for worried parents) will understand this illness

unlike some of the useless GP’s we saw
i still am angry about the fact one didn’t even check the scales and made me feel like a helicopter parent when I could see my d acting very strange at home 
if I could turn back  time!!
my d has lost 3 years of her life as we weren’t referred on or anything so then she relapsed 

finally we got the help she needed but a lot of suffering could have been avoided as I know many others have the same story 
so frustrating 

I’m so glad the researches are working hard and it offers hope to many 👍😄
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Warrior1
Kazi67,

I have had mostly the same experience when I went to GP to ask about PANS and he said he would do the throat swab but fully expected it to be negative. When it came back he referred us to paediatrics. The paediatrician was kind but wrote in the notes he would do the ASOT titre because of high maternal anxiety but expected it not to show anything. Now he is saying he can’t rule out PANS. CAMHS totally dismissed the idea. To be honest I’m not sure if I will pursue it any further as she seems to be doing ok again and to be honest I am getting pretty sick of having to fight so hard for a bit of help. I dream one day we will be able to take our children to a doctor who will listen, offer support, run all the tests necessary, get to the root of the problem and offer prompt, effective solutions without accusing the parents of being helicopters, over anxious or blaming them!☺️
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kazi67
I guess it comes down to GP’s being busy, working long hours, uneducated???idk?
(not really an excuse though as I work long hours and have been very tired over the past 3 years but I’ve still done my job properly, if not I would of left) 
and when my d first became ill I took A LOT of time off!
its so frustrating  when we feel let down by those who SHOULD know!!
if I don’t know something at my job, I ask or find someone who does know and ask for help/advise

This is a serious life threatening illness with a very high suicide rate 
I hope in the future much like the warnings/info for other childhood illness, parents are informed about ED/AN in the information you receive when you have your baby check ups/immunisations  or at teenage years information needs to be given to parents 
Something needs to be done
IMO it’s a disgrace but thankfully seems to be more happening in this area

i knew nothing about ED/AN I though it was just what the models got because they wanted to be thin 
untill I saw what was happening to my own d before my own eyes I never could of/would of believed this illness and how it effects the individual 
Unfortunately when something  is misunderstood it brings shame, fear and stigma
thank goodness mental health education  is slowly changing in the right direction and lets hope less lives are effected and EARLY interventions happen everywhere in the world for all not just those who can afford it or are lucky enough to get a GP who understands the seriousness of this illness

And that’s what upsets me the most I was onto it but was let down by the “system”
i became  burnt out through stress and worry and not sleeping and no body seemed to care or head us in the right direction until my d was VERY ill

Heres hoping those in the know keep on researching and sharing their findings/knowledge to all who need it!
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sk8r31
This is a blog post just written by F.E.A.S.T.'s Executive Director Laura Collins Lyster-Mensh on the release of the genetic study results.  It highlights the work of researcher Dr. Cindy Bulik (on the F.E.A.S.T. Advisory Panel), who also spoke about her next research project EDGI at the FEAST of Knowledge event in NYC this past March.  Great stuff happening, and parents/those with lived experience are helping to move the research forward!
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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LauraCollins_US

Being around as long as I have -- about 15 years now since our daughter fell ill -- I can confirm that this news is the biggest ED science news I've ever seen. I think it may be the biggest breakthrough EVER in EDs. It's not completely new, as the pieces have been coming together for a while, but the significance of being published where it is, and being spread this loudly, and pointing to the first proof of the actual genetics... this will change public opinion, alter treatment, help families, and scare the heck out of those whose explanation for EDs has been based on beloved myths. 

All of you can feel part of this news, too, because the F.E.A.S.T. community is part of it. And we are part of what's going to happen now, which is expanding the findings to include sampling the full range of eating disorders. 

We need to make it rare if not impossible for families not to hear, DAY ONE: these are real brain conditions not your loved one's lasting beliefs, food is actually medicine for all eating disorders not just to not be frail but to treat the disordered thoughts, take this seriously right now, find clinicians who know all this already."

Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
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kazi67
Laura this is really great to read!!
its really nice to know so much research is going on
Thank you to all who are working so hard!!
i have been questioning why there seems to be nothing happening with this illness, why so many doctors, GP, dieticians etc seem to know nothing when obviously in some parts of the world there are good treatment centres/hospitals and others there seems to be no funding or knowledge 
sometimes it feels like nothing is being done and can seem like govts etc seem to waste a lot of money on things but nothing seems to actually flow down to those who need it ie: patients, GP, dieticians etc
then when you read of other families struggles and your own families journey to the equation is is very disheartening to say the least 

but this news news is very exciting 
the future looks brighter for many I believe 
well done all!!!

sk8r31
great to  see of another research project going on we are in Australia so I’m not sure we can 
Input but good to see things are really happening 

This honestly gives me hope!
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Foodsupport_AUS
For those who are further interested in these research findings these are some blogs from UNC which detail the research and findings from the author's pen rather than a news report. 
https://uncexchanges.org/2019/
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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sk8r31
Just to underscore that this report is an international one, and included researchers in Australia, the UK, and the US.  Dr. Cindy Bulik has written a series of blog posts, as Foodsupport has mentioned above, and there are profiles of the research/genetics team.  It is very powerful to have this international collaboration.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Enn
Ok so you have to watch this! 
It answers so many questions about the study in layman’s terms! 
There are so many ah ha moments.
it is only about 16 minutes and so well worth it!
https://www.feast-ed.org/f-e-a-s-t-video-interview-with-us-and-uk-leaders-behind-recent-dna-resarch/
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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sk8r31
Agree with scaredmom that this is well worth a listen, and answers questions that parents may have about the research study and next steps.  
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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mnmomUSA
I was so interested to read this study.  My own daughter (now 6+ years post-diagnosis, and 3 years post full recovery ) is part of this study.  I feel we helped contribute to this in are own small way.  We were so fortunate from the very beginning to have a treating team who said "eating disorders are not a matter of choice or family dynamics, but are most likely genetic."  People on the cutting edge have suspected this for a long time...my daughter's doctor, in are very first meeting, said "I've never met a patient who didn't have a blood relative....mom, dad, sister, aunt, grrandmother...with this disease."  Just her observation from years of practice.  And, now we are beginning to see the actual science behind this.  Utterly fascinating.  I hope this leads to more effective treatment for all.  And a shoutout to all the parents still in the trenches...there is hope.  Keep going!
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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teecee
Sooooooo happy right now 😊💕💕💕💕
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SupermanR
This study is so helpful and builds my compassion for all victims of this disease and their families.  Nourishment with our daughter ended the mental illness, it’s that way round and therapy pointless in our experience until at least 6 months full WR - then in our case Art therapy to build resilience to manage away risk AN returns.  It’s physical / metabolic first and malnourishment then let’s mental illness set in.
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melstevUK
Brilliant article. I had already read about the results of the research and that there was a gene affected which also links to diabetes. 
Interesting because we have two mother's on the forum who have a child with an and s child who is diabetic. I meant to comment at the time that this very rare situation was clearly evidence of these findings. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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Enn
Just for clarification of the genetic association of AN and diabetes, the linkage is with type 2 diabetes not type 1 DM in this study. These are two different illnesses (type 1 and type 2) and have very different pathophysiology.  And it is a negative correlation not a positive one. 
The genetic association(negative)  is with insulin resistance which is a hallmark of type 2 DM.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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