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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ECH258
my daughter has been suffering and receiving treatment for anxiety for a few years now. She just started medication this past summer. A couple of weeks ago, her therapist told me (with my daughters permission) that she has been severely restricting calories and purging sometimes as well. I knew she had lost weight but when I questioned her, she always maintained that it was because the meds killed her appetite. Not so. We were referred to an eating disorder clinic at the local children’s hospital where they assessed her and our family. We were told that because she is almost 17, a family based approach won’t work. They said she possesses the insight and understanding to eventually stop on her own and the anorexia is a by-product of her anxiety. They also said her parents need to “back off” and not comment on her food intake. She is in therapy, doing CBT (cognitive based therapy) and the dr said that is the best route for this. This week, her family doctor also increased her antidepressant dose. 

It’s been 2 weeks and she hasn’t lost or gained. She says she can’t stop restricting calories and the ED clinic dr doesn’t know what she’s talking about. 

I’m so worried and at a loss. I haven’t said anything about her very limited food intake and I feel like I’m going to crack under the strain of it all. How can not doing anything about her eating HELP her recover?? 
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sk8r31
Welcome to the forum, though sorry you have a need to be here.  We also were told that FBT wouldn't work with our then-17-year-old d.  Not so.  We went off to the 5 Day Multi-Family Intensive program at UCSD 8 years ago, and haven't looked back.  My d was able to be nutritionally rehabilitated within 10 weeks, and the skills and tools we gained at UCSD were key to our success.

I strongly urge you to consider contacting either UCSD or UCSF for info on their programs.  The Centre for Balanced Living in Ohio also offers a 5 Day program for those 18-35, with a family member or friend as support.

Have a look at Decoding Anorexia by Carrie Arnold or Tabitha Farrar's blogs.  Your d can absolutely benefit from FBT.  Our d did, and this was also 3 years post-dx for her, when the T also said she was 'chronic'.

Sending warm support to you.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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scaredmom
Hello I will reply in more depth later. I see you are in Canada. Where are you located? Please look up NEDIC. Your d needs a proper assessment by an eating disorder specialist team. Is she being seen. I am not sure what you meant above about the Ed clinic doctor? They need you to be involved. Some will take referrals up to 17 years and 6 months and there are adult teams too.
if you could share  where you are we might be able to find some resources for you.
sending a hug
I will be back soon.
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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scaredmom
Sorry I missed she was at the children’s hospital clinic. FBT can still be used at her age and many have used it for adults. 
I think you do need to take charge of her food. Is there another place you could get another opinion about her case? 
I am sorry it is so hard. It is not that she won’t eat it is because she cannot eat. She needs you to take control. How can we help?
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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ECH258
I don’t know where else to go. We’ve seen the chiflren’s Hospital ED clinic doctor. Any other clinic would be private and we’d have to pay. Her therapy is already stretching my budget a lot. What I really don’t understand is, she only started restricting calories this past summer. How on earth did it get SO ingrained, SO quickly??? She is able to understand and admit that it started as an attempt to control something and not necessarily because she thought she was overweight. She knows it’s unhealthy.. . I just don’t get it. 
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deenl
Hi ECH258 and welcome,

Is there any chance that you could ask for a second opinion?

In my opinion, the most useful tool in the parents toolbox is knowledge. I read a lot and was able to argue against treatment issues that were not in the best interests of my son. Because I knew what I was talking about, they had to take me seriously. I was going to suggest the exact same resources that sk8r31 suggested as being especially helpful to your situation.

Decoding Anorexia because Carrie Arnold recovered from anorexia nervosa as an adult by going home to her parents who took over food preparation and sat with her during meals to make sure that she ate. The majority of people I have met and talked to in the last 4 years will tell you that it is much more difficult to recover without the day to day support of loved ones, be they parents, adult siblings or friends or partners.

And Tabitha Ferrar's resources because Tabitha also recovered from anorexia nervose with family support and is now a recovery coach who works over Skype with patients who are reasonably motivated to recovery. (That might be an option for you.) She has an extensive blog and has written well respected books on recovery and really encourages including family as supports. Here is a great post from her that I think may be helpful to your circumstances.

ECH258 wrote:
It’s been 2 weeks and she hasn’t lost or gained. She says she can’t stop restricting calories and the ED clinic dr doesn’t know what she’s talking about. 


Your daughter is showing great maturity and insight here and I absolutely think that she is correct. It is such a HUGE positive for her to have that insight and to tell you - it is her cry for help.

I found that reading and understanding the illness helped reduce the confusion and despair that I felt. I started to see a pathway forward opening up and felt more confident of being able to help my son. I hope that some research of your own will do the same for you. Please come back to ask any questions you have and for support or to let off steam in a safe environment.

Wishing you strength and courage,

D
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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scaredmom

I hear your shock and dismay. It is amazing how this goes on and we as parents were not aware. 
This is a biological brain illness like other illnesses and she is the throes of ED. 
You will need to take over the food and require her to eat. 
You may need to just sit with her to get her food in. There will be resistance and I hate to say, maybe even violence. She should not have any control on the food at this time. It is re teaching her now to eat normally. She cannot do it alone and she needs you to help her. 

Please read the books and blog suggested when you can. Here is another book  https://www.chapters.indigo.ca/en-ca/books/when-your-teen-has-an/9781684030439-item.html that many have found helpful. 

The way FBT works is that parents are in charge, the team supports you to feed her and have her gain and get used to eating normally.  Usually that is 3 meals and three snacks per day. Some kids need a lot of calories to fill the hole then more to fuel normal growth and development. Has she had her periods and if so are they still present. It is by no means a measure of health, but if she has lost them it tells you she needs to gain a lot. 
Many have found that it just did not happen and it was likely going on much longer than we thought. That does not change the fact that right now she has to get her nutrition. 
What is she eating now? We can help to get the calories up. 
Also many have had to stop all physical activities and school to get momentum of the 3 meals and 3 snacks per day. 
Please let us know how we can help
Many have done this without the help of a professional ED team and have used the GP to do BP and weights weekly. 

I wish I could give a very logical satisfactory answer to how it became so ingrained so fast, I cannot. It is a very strange illness. 
I want you to hold hope. The first step of getting more food in to gain, is the hardest. It does get better over time. 

Some basic tips, I hope help you.
1: Bathroom prior to the meal
2: supervision after the meal for at least one hour to ensure she does not purge
3: Some have found distraction at meals helpful for the child to eat. Youtube, games, puzzles etc. We found we had to be silent and look away from her when she ate.
4: physical exercise may need to be stopped and it can be an obsession for some kids. My d stood all day from waking to bed time and literally did not sit. 
5: For purging, you need to watch like a hawk and may need to take the doors off the bathroom to help keep her safe from the urge to purge. Also having her sing while in the toilet may help her not to purge. Look in her room for evidence in boxes, water bottles back packs, etc..
6: you may need to take her out of school 
7: You may need to tell the school, Some schools/teachers get it and some don't. Some can do some meal support and sit with her and ensure she eats, others don't.
8: If there are dogs at home, ensure they are not around at meals to eat what she drops
9: NO sleeves at the table, no pockets, no napkins as she may be hiding the food she should be eating.
I know this is overwhelming and you have a lot of power here to help her. 



How can we support you? 

Sending a big hug.


Edited to add: singing in the shower/ toilet lets YOU know if she is purging as she will stop singing.

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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kazi67
Hi and welcome 
great advice above 
my d issues all started with extreme anxiety too, then we noticed the weight  loss

we started refeeding our d at 17.5 and I did in fact get the weight back on her
it was not easy at all and I took an entire term off work plus more, I sat with her for one hour after every meal and slept with her
she was miserable,,cried, isolated herself from her friends, refused to come out of her room
i had to lift the cup to her lips for her to start to drink, and bring the spoon to her lips so she would eat

After about 6 months when I thought she was WR (useless GP did NOT check the scales) and treated me like I was a helicopter parent 
the GP was the  only  support we were getting as we were on waitlists for services 

I “backed off” then she managed to loose all her weight plus more and ended up IP
an now 2 years from that she is only starting to  re-engage with her life and this whole terrible journey has been dreadfully hard for all of us especially her - 3 IP stays now 

so IMO don’t “back off” 

i know now how inadequate that GP’s support was and sometimes I feel like writing to him to let him know the hell my d life has been because of his lack of knowledge but I probably will get too upset 

what I have learnt (mostly from this forum
and now that my d has ED specialised help)
is that the purging MUST b stopped)
plus they need to eat EVERY few hours 
3 balanced meals and 3 snacks 
my d also had to stop ALL exersize 

when the brain is in malnutrition it can’t  think properly and the ED takes over 
my d understood  too that something was wrong, but it took over and she had no control over it 
once the brain gets the nourishment it needs they start to get better and the brain works again 
it takes time, lots of time for brain  healing please don’t wait start re feeding your d ASAP

and don’t give up hope!!!
revovery is possible 
my d is doing well now even after us being let down so badly from help and support to start with 
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Kali

Dear ECH258,

Welcome, as we say here, to the club no one wants to join. 

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We were told that because she is almost 17, a family based approach won’t work. They said she possesses the insight and understanding to eventually stop on her own and the anorexia is a by-product of her anxiety. They also said her parents need to “back off” and not comment on her food intake. 


My daughter was 17 when she was diagnosed. Although we did not do manualized FBT, she had supervision at mealtimes and 3 meals and 2 snacks a day for a very long time. The bathroom was off limits to her after she ate for quite awhile because she too, like your daughter, had been purging. She also had enough therapy to last a lifetime. 

I took the good advice on this forum, which was to find a way to get her weight restored and to get her eating again, continue to make full nourishment a priority for a long time and to seek evidence based treatment. My d. was not able to stop on her own and she benefited from a great deal of support from her family and friends.

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It’s been 2 weeks and she hasn’t lost or gained. She says she can’t stop restricting calories and the ED clinic dr doesn’t know what she’s talking about. 

I’m so worried and at a loss. I haven’t said anything about her very limited food intake and I feel like I’m going to crack under the strain of it all. How can not doing anything about her eating HELP her recover?? 


Your daughter is letting you know that she cannot stop on her own. And I think you are correctly understanding that if you do nothing about her not eating, you aren't helping her recover. And you have followed the advice you were given by the clinic dr. and she has not gained anything in the past two weeks and is still having difficulty eating. So...time to try something else?

And the question really is, where do you start?
And how can you support her to be fully nourished and recover?
How much is she eating now and how can you increase the amount of food she consumes?
How can you put together a good team of professionals who will support and help?

It is a steep learning curve, and most of us arrive here frightened and feeling very alone, so if you haven't yet been on the feast website, there is a ton of information for families:

https://www.feast-ed.org/

Come here to vent and to ask questions and get support. We have been in your shoes and we know what you are going through. 

warmly,

Kali


 

Food=Love
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Mamaroo
Welcome from me as well. You've already got great responses and as you can see if your d is in any way depended on you, you can use FBT and be in control. Tina72 is another mum with an adult d, who managed to refeed her as well, so it can be done. You can use everything you pay for (car, phone, school etc) as an incentive to get the food in. Some parents also use a contract for their adult children, which spells out exactly what is expected from them. Good luck and sending you lots of hugs 🤗🤗🤗
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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