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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I've been lurking on this website for a few days and I have to say that I've gained valuable information and insight into the ugly and messy world of eating disorders. Once my D is out of hospital we will be enforcing Magic Plate and the Maudsley approach. Thank you so much to everyone who has posted and contributed towards ATDT and F.E.A.S.T.
My D (RAN) has been inpatient for the last month to stabilise her bloods, heart rate and blood pressure. We are currently waiting for a bed to come available in a specialist eating disorder unit, hopefully locally (SE and London). Does anybody know what units are available in this area and what are your opinions of the care that your children received? Also, does anyone know the average waiting time for a bed in a specialist unit to come available?
I know that the quality of CAMHS varies around the UK, but once my daughter is back up to around 85% and we can think about psychological therapy, it would be useful for us to know what to expect: how often was your child seen by a phychiatrist; did they provide information and support for home; how was the transition from IP to home handled?
Thanks again x
Hello Eat2beat - I am sure you will get lots of good advice from veterans on this website. Regarding your specific questions, I think it might actually help you to focus on what your D needs now and to take everything one step at a time. If she needs a specialist unit, I think it is unusual to be provided with much choice unfortunately. And I don't think an average waiting time is of much use either. It will partly depend on the urgency of your D's situation and how good your CAMHS team are at ringing around every day to check the availability of beds and when one comes free. So I would make sure you stay in daily contact with your CAMHS team to ensure they are doing everything they can to find the best solution for your D.
Once you know the next stage, there will be many people who will be able to provide you with further advice. I think the support provided for transition depends on the unit and the local CAMHS, so the best thing is to make sure you get prepare yourself for that. Best wishes for your D.
Hi Eat2beat,

A very warm welcome to the Forum. 

Hyacinth is right to suggest concentrating on the here and now first, recover from RAN is not usually linear.

There is no set waiting time for a bed in a Specialist ED Unit.  Once the CAMHS Team decide that your D needs to go to a unit, they start the search for a bed.  They start with the nearest, and work out, geographically until they find a bed.  They literally have to ring each unit to find a bed.  I know when my D was transferring from General Hospital to a Unit, they said that it could take 10 - 14 days to get things in place.  As it happens, there was a bed in our local unit (10 minutes away) and it took about 5 days, I think.  My D was in a unit that took Mental Health Patients (Children only), but there are also Specialist ED units.  We are in West Sussex.  The patient before my D had to accept a bed in Edinburgh, as that was the only bed available at that time - so, your D could literally be sent to anywhere in the country if there are no other beds available.   There is a very real shortage of beds in the UK, so this tends to remove any choice - unless you are able to pay privately.  As far as recommending Units is concerned, you might find some useful information  here http://www.aroundthedinnertable.org/?forum=189312#gsc.tab=0

When your D is ready to leave IP, she will be discharged with a plan in place, which usually (in our area) involves support at home, starting at 3 times a week with regular appts with a Therapist (once or twice a week), and the support at home gradulally tapers off, as re-feeding at home gathers momentum. Therapist appointments will continue through this. But prior to her being ready, there will be a gradual build up towards being ready - ie snacks/meals with family, day release home, overnight stays at home etc.

As far as therapy is concerned, my D wasn't offered any one to one therapy until 95% weight for height, under our team.  Her brain was not ready before this.  My D only really went down to 85% weight for height at her lowest. 

Have a good look around the forum.  Good luck.

UK - South East

19 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions. 
2017: CAMHS CBT. WR, dropped out of 2 different colleges and started an apprenticeship.  Started having grand mal seizures and was diagnosed with epilepsy in Nov 2017. Sacked from job because of this.  Tribunal ensued.
2018 - doing a Psychology degree through Open University and working in retail to pay her way in life. Relapses with eating disorder in June 18 and Nov 18 😢. 

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
I just want to say Hi and welcome to the forum but so sorry that you need us.  You will find such valuable information here from those who have walked the path before you.  Read around as much as you can and ask lots of questions.  Or just come here to vent because that helps too.  I'm in the US so I don't have any knowledge of CAMHS but from what I hear, some teams are great and some are not so great.   But information and knowledge is power so learn as much as you can from here and use that knowledge to work with your team!   Hang in there! 
I'm new here, and fairly new to eating disorders.  So take everything I say with a grain of salt. I'm just going off of what we were told in the hospital and outpatient sessions, and what we did.  Our son(age 12) was diagnosed with anorexia in late January.  Luckily, our Dr. picked up on what was wrong right away and got us a referral to see a psychiatrist at a children's hospital that isn't too far from where we live(very thankful for this!).  We got into the psychiatrist the next day, and by that afternoon he was in the hospital.  The children's hospital has a program that specializes in treating children with eating disorders.  He was in for 12 days.  I think it's critical to get into a hospital that specializes in eating disorders because they know how to feed them correctly because they have dietitians that specialize in it.  A regular hospital may not know all the details about how a severely malnourished body works and the whole hyper-metabolism aspect that mal-nourished kids go through when they come out of it.  I was shocked when our nutritionist told me how much they feed kids when they are in the hospital, and how much they need to eat to gain weight.  She said she gets kids up to 5,000 calories per day if they are in for a longer period of time.

We used the Maudsley/FBT approach and used Magic Plate(although I didn't know that's what it is called until now, had to look that up).  When he first got out of the hospital, we had two visits with a therapist that week, then weekly for the first month.  Then every other week, and we are now at every three weeks.  How often you meet is going to depend on how well the kid is doing.

The magic plate approach is great because it eliminates or reduces many of the triggers that set off a kid with ED.  And it sets the ground rules for the child so they know what to expect.  Here are the ground rules we used at first.

1) Child cannot be in the cooking area when food is being prepared.  This way they don't see what's going into the food that may set them off.  Especially when you are adding high calorie fillers such as butter or whipping cream.

2) The child cannot ask what's in something or how many calories are in something (or how many calories they are consuming in a day).  Well they can ask, but you won't tell them.  Tell them up front that he/she is going to get a canned response of "It has what you need" and that's all they get for an answer.  This takes the stress off you and you won't have to lie about anything.

3)  The child cannot dish up any portions, you do all of it.

4)  The child cannot make substitutions.  They will try at every opportunity.  Don't give in, even if it's a like for like calorie count (for example "can I have milk instead of juice")  If you give in, they will try even harder.

5)  Do not take the child grocery shopping or help with meal planning(not in the early stages anyway).  This just overwhelms the kid.

6) Every meal is fully supervised.  In fact, every bite is supervised.  I went to my son's school every day and ate lunch with him so I could supervise.  Thankfully, my job and employer was very supportive and flexible.

7) One more trick that's not really about magic plate but is helpful is to have a distraction plan in place for when things get ugly.  Do this with the child ahead of time when they are calm.  Our son had several funny Youtube videos that he liked to watch.  So when things went bad, we'd bring those up and watch them with him.  That helps take their mind off the food and brings them back to Earth.

We were told that the key is to get the kid up to a healthy weight as quickly as possible.  Once the child is there for a time, the eating disorder thought processes that cloud their thinking will then clear up, and your child will return to normal.  I didn't believe it at first, but it worked.  Our son went into the hospital on Jan 29, and his last eating disorder outbreak was on Feb 28.  He is now back to his old self.  Full of energy, healthy, and thankful that the ED has cleared.  He says he no longer worries about food or calories.  Those first few weeks were AWEFUL.  Some of the worst in our lives.  Every meal was a battle and a victory once it was finished.  Every day we heard "I hate you!",  "why do you care about me?  Just leave me alone so I can die!!" etc.   Terrible things to hear come from your child's mouth, but we knew it wasn't him, it was the eating disorder talking.  Many times he'd run away from the table and hide.  I'd have to go find him and carry him back like a baby as he kicked and screamed.  Now that he's better, he says that he feels so good and doesn't ever want to go back to feeling the way he did when he was in the depths of the eating disorder.  Now we no longer hear "I hate you!" but get "I love you"s all the time.  He thanks us all the time for helping him get through this.

We are now at the stage where we are slowly backing off of doing everything food related for him.  He now prepares his breakfasts (but I keep and eye on it to make sure he gets enough).  He also eats lunch at school with his friends instead of me going there to eat with him.  We are also to the point where he can serve up his portions.  He has a pretty good feel for what he needs and does a good job of taking enough food.  We are also backing off the daily calories a bit.  I cannot believe how fast our son came out of this.  I know we aren't completely out of the woods yet, but things are so easy now compared to those first few weeks.  We just need to keep an eye on things and keep monitoring.

Well that's a lot of rambling, buy hopefully there's some information in there you can use.  I wish the best for you and your family.  You can get through this, but it takes a lot of work.