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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1) Talk to us first without our sick kids. Be aware that our sick kids might not tell you the truth.
2) Please tell our kids that they must eat all that we serve. That we are in charge. 
3) Understand that we are in charge because we need to live with the consequences of bad decisions.
4) Do not set any target weights or talk about numbers in front of our kids.
5) Please respect if we ask for blind weighings although it is not in the manual.
6) Go for state, not weight and forget the time lines in the manual. Recovery from ED is not done in 12 months.
7) Help us with direkt help. Give us a list. Give us recipes. Do not only say "you need to find out yourself".

Please add to that list. I know that a lot of professionals are lurking around here, maybe we can start a change that way.
Keep feeding. There is light at the end of the tunnel.
Please do not give our sick kids a copy of a meal plan.
Please don’t put measures on the meal plan or at least tell carers it’s the minimum.
Please give my child permission to eat anything, don’t talk about healthy eating.
Please swap the word exercise for activity, it’s exercise that helped lead many of us to your office.
please UK learn about extreme hunger - it does exist.
please don’t be fat phobic, don’t be scared of what my child is.
please don’t collude with the disorder, half fat milk is not Ok right now.
1.) Give us and our child specific follow up instructions that your entire team will follow.
2.) Don’t tell us to go to the emergency dept after X number of refused meals only to tell our child that she is fine to go home after she eats a package of crackers.
3.) Realize that if we are asking for residential treatment referrals it isn’t because we are ignorant of the success of FBT or that we as parents just need to get our big people britches on and do the hard work of refeeding. Realize that some children are so ill that even you the professionals send them down the road for a “higher level of care.”
4.) Don’t tell my child in her individual therapy session that “her parents have a ‘long, long way to go to learn how to support you’” when you, as the professional have no more ideas for ways to leverage my child to eat at home.
5.) and ditto to all the above

Thank you, Tina for starting this thread. I do hope the professionals read and take these things to heart. 
Don't give back control quickly and discuss with parents, not in front of kids. 
Kids need high amounts of calories for a long time.
Brain storm different ideas with the parent. There are many different techniques and not one right way to do things. For some kids it's better to have a meal plan and know what they will be eating ( the parents should still be in charge of serving the food) and for some magic plate works better
There is no such thing as a target weight for a growing child.
And don't ever tell child that they will be at healthy weight when their period returns.
Put basic information together for all GPs and schoolnurses and other health-professionals families may turn to for initial help- including how to start refeeding before being seen by specialist team.
Don't just send parents away with a meal-plan at initial assessment. We need education, signposting to resources, parent support groups.
Set up easy means to get feedback from parents about whether the system is working for them and put practical things in place to improve service
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
Never forget that parents refeeding at home need to be in charge and need to be empowered to do this.
Encourage them to take on role of leading the refeeding; listen to them and agree together what the next steps are for child without child/yp present).

Never say to parent in front of child- some parents add all sorts of hidden things to food; you are not one of those parents are you?

Understand that children need nutritional rehabilitation and in the first instance it does not matter how those calories get in. Teach them how to provide high calorie food - understand it is extremely challenging refeed an anorectic child whose body is breaking itself down, with usual food.
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
Put support in place for parents/carers-including for their emotional and mental wellbeing.
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
More excellent points made. We have many common complaints and experiences.  These things seem common sense now to us because we have lived this and learned so much, our teams haven’t lived it so need to trust us when we raise these issues and things need to change in treatment based on the lived experience. 
A live-in coach/referee would be nice.
Due to social withdrawal, I am the only confidante my child has. Give me language I can use so that this process doesn't fully break our bond. She has no one else.

Write things down and give them to my child. She can't remember things told to her verbally. All of the "your mom is in charge, you have to eat what she gives you, you aren't allowed to blot your food" is truly not processed and forgotten.

Please recognize that someone can have both anorexia and orthorexia/OCD food restrictions. It is a complete waste of your time to suggest to her that she eat ice cream, lasagna, pizza, smoothies, etc. Stop telling the two of us that that should be the next meal. It will be a meltdown and 100% meal failure. 
1. If a child's medical chart indicates treatment for an eating disorder, please don't disregard and think it doesn't matter or apply to your field of practice. Eating disorders affect the mind and the whole body.
2. There is no such thing as "a little Anorexia." If you aren't trained in Eating Disorders you are in no position to judge an individual's severity.
3. Yes, physical activity is important for a person's body and to keep atrophy at bay, but for someone with Anorexia Nervosa (Purging Type) it could trigger a relapse.  
4. If a child has a fractured back that doesn't want to heal or that child keeps getting re-injured (and they're a gymnast), perhaps ask the caregivers about her diet/weight/history. Heck, perhaps ask yourself as a medical doctor. ?? Eating disorders are prevalent, real, and insidious.
"What's comin' will come and we'll meet it when it does."
Do an in service training day with local police and rescue personnel and also ER Depts. You could just do one video and have it be part of annual training for those people. Outline what you would want providers to do/say and perhaps more importantly what to NOT do or say when parents get so desperate as to summon police/emt types or take kid to the ER
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
In our case in the beginning when we went to the GP as concerned parents PLEASE
Take it SERIOUSLY and PLEASE get the GP to refer on to specialised services

i had to ask for this referral

It would of also been helpful to have information available for the parents/carers about ED given to us by the GP so we can get informed quickly and know what we are dealing with quickly 

why wait till they are seriously ill and needing hospital admittance 

I would think this is the first place a parent/cater takes their kid when worried about them so why not have all the info or direct us to where to get the info 

even a list of specialised ED professionals so we can find out where to go what to do ourselves if the GP doesn’t know

as we know this illness is very sneaky and waiting too long only makes the ED become entrenched and harder to treat especially if diagnosis is with a teenager going into Y/A

GP should know that the patient doesn’t see themselves as sick 
and parents/carers do in fact know their kid and know when something isn’t right 

trust the parents 
include parents
Yes absolutely Kazi. And they should know to check vital signs. And basic advice about 3 meals and 3 snacks. How many kids lose weight between gp appt and seein ED service!!!!!!
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
Give us a hand-hold and some cheerleading. Do tell us we can do that and give us some hope.
Do not only tell us how bad our situation is. We know that already.
Keep feeding. There is light at the end of the tunnel.
If you're a GP, please have the humility to know the limits of your professional knowledge and do some research/ask a colleague for guidance.  Engage in professional development to educate yourself on current best practice.  Please don't ask my child in private if she's restricting food, then reassure me that she says she is not, and then wait for my child to be 'ready to be referred'!

If you're any other kind of medical professional, please don't refer to my child as 'an anorexic', especially not in front of her!  She is no less a wonderful human being for being ill, and in fact she is fighting a foe most people never have to have the courage to fight.