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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fl0r3nc3

Hello everyone! My daughter has had both Annorexia and Bulemia for 5 years, and she is getting more rigid and unflexible fast; even after having been hospitalized last year as well as getting one one on therapy with several therapists specializing in eating disorders and PTSD; and even NET (Neuro Emotional technique). I see only Family therapy as the next step. Her vitals are OK. Not her mental state. Since therapists want to do one on one and it is not working, I may have to step in and take more charge since they cannot "move her" with the methods they are using. They are very good, but at this point she is lacking the motivation and need more than the consistency of the type of support that one hour a week can provide. I will need  to step in. Any suggestions how that would work and how I can best support her without "Micro manage" and stress her out? She has episodes where she is not doing well regardless of opportunities and chances given her. I am an ABA therapist (we focus on behavior modification to increase productivity and quality of life - mainly children with Autism) and that is barely working. We use reinforcement schedules and structure to facilitate correct responses. We work with preferred activities and items to engage and help with redirection and self-regulation, etc. I am trying to increase motivation.

At this point I am needing more. I have checked for providers in Atlanta, that use empirically based methods (for family therapist that have experience in ED; that may have more than the basic understanding. (Understanding for the PTSD, ED, etc as well as Family training)  on Academy for Eating disorder, and Nationaleatingdisorder.org I don't see how to find them. I am trying to find a proficient person in Atlanta, Ga area that can hold many hats in order to help her. Calling insurance will not work; as I need an experienced person not just a participating provider. Does anyone know which entity, webpage, vehicle I can use to find the best/most trained person that can help?

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Foodsupport_AUS
Welcome to the forum. Sorry that you have had to find your way here. Hopefully someone who is familiar with Atlanta can give you some ideas as to good therapists in the area. At the same time therapy is only a very small part of recovery from eating disorders. The hard work comes with doing the long term work weight restoration and normalising nutrition. This is the work that needs to be done first. 
If you are looking for someone trained in FBT then the trained to treat website has a list of providers that have experience in ED and further have done the specific training required for FBT. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Kali

Hi fl0r3nc3

Welcome to ATDT. I'm sorry your daughter is struggling. 

The evidence based therapy for teens and young adults with eating disorders is called FBT or family based treatment, which is a bit different from one on one therapy with a family therapist. I don't know if you and your daughter have looked in to that yet but here is a website which has some information about it.

http://maudsleyparents.org/welcome.html

Other therapy modalities which my daughter found helpful with her eating disorder was CBT, DBT and REACH therapy. She does have an individual therapist as well, who has been treating her for depression.

I'm not from the Atlanta area but am sure some other parents who are will be along soon to give you some ideas. There is an excellent FBT therapist named Sarah Ravin who is located in Florida. With what is going on right now with Covid, I wonder if she might be worth getting in touch with her to inquire whether she will do video conferencing or teletherapy?

https://drsarahravin.com/

As far as motivation, it is part of the illness that a person with an eating disorder is not always motivated to recover. That, however, doesn't mean that they cannot eventually recover, with the right guidance from family, friends and professionals. How is your daughters weight and eating at the moment? How often is she purging?

Many families have found that eating at home with their ill family member and making sure that they have three meals a day and snacks which have sufficient calories and nutrition in order to restore weight if needed, or maintain once a good weight has been achieved is one of the most important ways to guide someone towards recovery. In effect you are helping them to normalize the relationship to food by doing that over and over again every day. In addition, making it impossible for the person to purge afterwards, for example by not allowing them to go to the bathroom after eating and sitting with them and helping them distract from thoughts of purging have been helpful in getting them to stop purging. In my daughter's case there was a three month period where she was not able to go to the bathroom after eating and had to sit with others after eating in order to get a handle on the purging.

There is also a part of the board called Parent Reviews of Treatment providers, perhaps you can take a look here and see if anyone has mentioned the Atlanta area:

https://www.aroundthedinnertable.org/?forum=189312

Hope this gives you a few ideas to start your search out with.

NEDA (the national eating disorder association) also has a hotline where you can phone and they will give you names of providers in your area to look into.

warmly,
Kali

Food=Love
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Barberton
I just sent an email to trained2treat4ed to ask if there is a program for parents/carers to qualify as FBT support. They seem to be the only organisation that offers training in FBT, but it looks to be only for clinicians. I'm just a parent, but I wouldn't mind some training in how to do better at FBT. Does anyone know of a training program available to parents/carers that's delivered online?
D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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salmy
It can be insanely difficult to find a therapist the specifies in ED using the FBT model. Before we were able to do a therapist I ordered and read both of Locke and LaGrange’s books on FBT: Help Your Teenager Beat an Eating Disorder and Treatment Manual for Anorexia Nervosa: a treatment manual. Both of these texts were helpful in understanding FBT and the parental role in treatment. There are many other books that were also helpful, but these 2 gave me some wheels by which to move forward while we were going it alone. 
D16 diagnosed AN October 2019 -25% of body weight, but still "healthy weight" per Dr.
Started FBT Dec 2019
July 2020 Fully WR + 10%
2 Months in to Phase 2
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Enn

hi there and welcome!
Is there something we can help to come up with as a group?
If you feel comfortable please let us know.
May I ask how old your d and how had it gone in the past? 

There is such vast experience here, if you wish to share more someone may have had similar circumstances as yours and can help. 

sending my best 

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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fl0r3nc3
Thank you for the suggestions and recommendations. I am going to read the book: Locke and LaGrange’s books on FBT: Help Your Teenager Beat an Eating Disorder and Treatment Manual for Anorexia Nervosa: a treatment manual; as well as go to trained2treat4ed for more recommendations. All of the other comments were really helpful; and supportive. Thank you
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Barberton
An interesting interview with Drs Daniel Le Grange and James Lock and Laura Collins Lyster-Mensh - the authors of the book, Treatment Manual for Anorexia Nervosa - A Family-Based Approach. Everything you want to know about FBT.

I note that they talk about FBT (which is Family Based Treatment NOT Therapy) really needs to be conducted by/with a trained therapist. Okay, I understand why, but it's us at home that have to carry out the Phases at home. So what about training us?

https://open.spotify.com/episode/4LO9kDUYTJgcxzXt1fSZqL?fbclid=IwAR2gXGNjaRuBQS0AncweISfqZQgaCjrEMwfiaHTVgECTfooqJN9Cfl9B4V0
D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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Kali

Hi Barberton,

Yes FBT is a treatment modality which is conducted by a trained therapist with the ill person and their family, and the family serves as supports at home to help the ill person with meals. Have you looked in your area to see if there is an FBT therapist who could help your family if you are interested in doing FBT? 

I agree it would be good to have some sort of training for parents to be better meal supports at home. When we were refeeding my d. met with the FBT therapist for a few sessions and then refused to continue, and was over 18 so I had very little recourse—except that I was in charge of food at home. So I met with the FBT therapist without my daughter for a number of sessions to get a better handle on what I was doing at home. We didn't do manualized fbt but I had the guidance of the therapist to help work out what I needed to do at home to increase my daughters weight. I was able to get her weight up and meeting with the therapist was very helpful. My d. did have other professional help at that time she just refused to see the FBT therapist. The big issue was the the therapist started each session by weighing her and my d. was in a period where blind weighing and trying to eat was really a better course of action for her. The weighing really upset her.

warmly,
Kali

Food=Love
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debra18
I think there is something called parent lead refeeding that is more of the idea of parents being trained in refeeding their kids . However, I don't think it is highly researched or promoted yet. That is what I did. I trained myself and the pediatrician and fed her myself. There are coaches like Eva Musby and JD Oulette that give support to parents. I am a school social worker so I know about ABA therapy. It is a similar idea. But my daughter never responded to incentives. What worked for her and still does is clearly stating expectations (this is what you need to eat. There is not a choice ). And logical consequences stated like this "when you finish eating we will go out " . She rarely refused any meal but in an extreme situation threatening to take her to the hospital worked. Feel free to email me. Would love to discuss similarities and differences with ABA. 
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Kali

Hi fl0r3nc3 and Barberton,

Here are a few additional resources you might want to look into if you haven't read any of these yet:

https://www.newharbinger.com/client-resources-treating-eating-disorders-adolescents

https://www.amazon.com/Skills-based-Caring-Loved-Eating-Disorder-ebook/dp/B01IHQ431K/ref=sr_1_1?dchild=1&qid=1595622434&refinements=p_27%3AJanet+Treasure&s=digital-text&sr=1-1

 https://www.amazon.com/When-Your-Teen-Eating-Disorder/dp/1684030439

best,
Kali

Food=Love
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feedingcaponsus
Hello, I am in Atlanta, and the best group I have found is Veritas Collaborative. I’m not sure what programs you have tried in the past, but if you haven’t checked out what dr Anna Tanner and the team there can do for your daughter, I would contact them. We futzed around for 4 years with all kinda of therapists and doctors before finding them and now my daughter is in complete remission and heading off to college in 2 weeks.I know of a couple of good ED therapists, one of whom my daughter went to after discharge from Veritas and who is going to be there to support her remotely in college, but I don’t think they are FBT trained.  Feel free to message me if you’d like!
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fl0r3nc3

Hello and thank you!

Yes, I know about Veritas. She was hospitalized there last year, and has since gotten worse. It did provide structure, but mentally it put her in a state of panic. Her experience was totally different, and there were no follow-up and help for us after she was discharged. We had an insurance at the time where there were not therapist for ED and we were on our own. We needed a soft place to fall afterwards; and we were on our own.  I don't know when your daughter was there, but they assign different therapists and doctors to different girls; and we had a good therapist, but the overall experience to my daughter was that she had structure; but not enough for the underpinning issues: mental. Thank you

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feedingcaponsus
I sent a response via email with the names of a couple of therapists I would recommend. Let me know if you don’t get it!  
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feedingcaponsus
Another thought: the Carolyn Costin Institute has a family and loved ones online course you can take. I have not done it, so can’t speak for it, but you could check it out! I think the course is $375. Near as I can tell it does not cover family based treatment protocols though.
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melstevUK
Hi fl0r3nc3,

When ed patients are being re-fed and putting on weight their anxiety is huge, and I mean huge. A lot of families experience violence such as plates and food being thrown around. A lot of the behaviours come from the brain being in a state of starvation and the fear of weight gain is just part of the illness. 
Trying to find other causes or mental issues for these behaviours will lead to nothing. Your child somehow lost weight either deliberately or by chance or failed to grow as much as she needed and for susceptible individuals, it is as if a trigger is switched on in the brain and eating becomes terrifying. 
Weight restoration has to occur but it is almost exclusively accompanied by severe fear and the family and patient have to learn to tolerate the distress of this process. 
Your d may have other comorbid issues such as depression or generalised anxiety but a lot of families find that these issues resolve with weight restoration and a nourished brain. 
You need a team who understand this and will support you in this and give your d the clear message that this is what is required for her to get her normal life back. This is the FBT approach which is referred to above and while it is laborious and stressful it gives young children and teenagers in particular the best chance of getting a recovery well established. I hope you can find therapists in your area who can help you and your d with this worrying situation. 
Come back if you have more questions. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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Kali

Hi fl0r3nc3,

Here is another recommended resource :

https://www.goodreads.com/book/show/30131598-survive-fbt

and the link to the Carolyn Costin course for families and loved ones:

https://www.carolyn-costin.com/familieslovedones

I have not done it but it sounds interesting.

warmly,

Kali

 

 

Food=Love
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fl0r3nc3
Thank you so very much. I  truly appreciate it! I already bought the first book and will finish that one. The one for clinicians recommended; Treatment manual for Anorexia Nervosa -  A family based approach by James Lock and Daniel Le Grange. I didn't realize it was for clinicians. I might just finish that one and add the manual for families
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debra18
The video on youtube called "eating disorder meal support" is also very helpful . I also recommend blogs on kartini clinic website and dr o'toole has a book called "give food a chance"
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Barberton
Thank you, everyone, for the advice and links. I've tried, read or looked at most of them - which is reassuring to know that we are all on the same page! 
D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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feedingcaponsus
I just sent you the therapists names a different way. Let me know if you don’t get them!  
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