F.E.A.S.T's Around The Dinner Table forum

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mamabear
Broken record here but I feel it needs to be said again...

There have been a rash of parents lately in all of the support groups being told by their “ FBT” teams that their kid is some unique case. Told that their child’s ED behaviors should be better by now TWO MONTHS into refeeding etc. People being pushed into “ stage 2” giving back “ independence” because x amount of “ therapy sessions” have happened.

That’s not how ANY of this works. Those of us out to the other side can tell you that this is a marathon process. That most often our kids need many months and more often YEARS to get to reliable independent eating.

For example: my d. Diagnosed at ten. Auditory and visual hallucinations of “ the blackness”. Panic attacks, severe exercise compulsion with OCD. Depression and anxiety. Telling me what dress to bury her in. She was initially diagnosed as psychotic with possible early onset schizophrenia with secondary anorexia.

She had anorexia.

With a huge amount of weight gain and TIME and continuous High calories and fats ALL of these behaviors/symptoms gradually disappeared. Body image issues are some of the last to go. It took 2.5 years for her to eat one bite of “ extra” food that was not “ required” of her. This is not abnormal.

So I guess what I am saying is don’t fall victim to “ white coat syndrome”. Because someone has a degree in something doesn’t mean they are all knowing and all powerful. I’m married to a doctor. I’m a nurse. We are not all created equal.

YOU are the expert on your child. You know I’m your gut for example if blind weighing would be beneficial to your child. You know In your gut if your child is not ready for independent eating. Don’t feel pressured into making moves if you are convinced it’s not time.

I wrote the stages and timelines thread years ago. It’s as true today as it was then. The whole thread is great. Take the time to read through it.
❤️
Persistent, consistent vigilance!
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debra18
I think the problem is that FBT is manualized and in order to be evidence based must go the way that they did the control studies. That includes open weighing, giving back control to the child after a certain number of sessions , "independent" eating too early, and telling the child what is in the food. Maybe it's time for new studies? And in the US people are lucky to get to those FBT therapist because where I live psychotherapy is still the method being used and covered by insurance.
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mamabear
FBT therapists are few and far between. Nearest to me is 8 hours.We had no team. We did it on our own. Frankly I’m strangely grateful for that. This forum was our life line 9 years ago. 
Persistent, consistent vigilance!
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debra18
I also did it on my own but people shouldn't have to.
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mamabear
I could not agree more... ❤️
Persistent, consistent vigilance!
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ACL
Agreed. Out daughter is 13. We are 11 months into effective re-feeding (1 1\2 years from initial diagnosis of RAN, 2 1\2 years from initial onset of symptoms but that's another story). Her weight is great, at highest weight for age percentile she was ever at pre-illness. She is growing ( after 2 years stalled height growth). She is in school, state is good- she laughs,  has friends. But, she still has a limited range of foods, still takes longer than the rest of us to eat. And, still has years of growing and developing( body and brain) to do. I hope one day she will be able to eat intuitively. But, it's clear to me that's a long way off. In the meantime there is no way I am going to put her in the position of having to decide whether and how much to eat. Her meals and snacks are all plated and supervised and will be until she is truly able to eat independently. Thankfully, we are lucky enough to have found a therapist who understands the importance of weight, listened when we asked for weights to be done blind, is not pushing for us to " hand back control" to a still recovering still growing child. 
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tina72
I think big problem is that the FBT manual says stage 1 is x weeks and stage to is x weeks and you get to stage 3 in about 12 months. That is totally unrealistic and I really want Dr. Le Grange to change that in the new manual. The time frame is unrealistic itself and it is unrealistic to make it not individual to each family. A case with purging for example or exercising is way harder to treat as a "normal" case with "just" not eating. I already wrote to him but sadly got no reply.

Maybe an important new job for FEAST?
Keep feeding. There is light at the end of the tunnel.
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debra18
I think they need to make new trials before they can make a new manual
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mamabear
What IS the “ evidence” to back up the ludicrous “ time frames”? I do not know of ONE single parent who can attest to this actually being what so ever realistic or actually helpful. 

All they need to fo is talk to the hundreds and thousands of us who are and have lived this to know the REALITY of how LONG it takes to reach FULL RECOVERY. 

And i think that's the true battle as well- to aim for FULL recovery. This means living a normal life. Eating what you want when you want. Not having to keep track or count anything. Not having to weigh oneself regularly. Not having to go to therapy for eternity. 

Not everyone can or will get there- but it SHOULD be the fundamental goal. I don’t think the ED world of professionals themselves, at least the vast majority, think that is possible. I think they’ve settled for “ good enough” for too long. So many on the constant edge of relapse because they were never truly weightcrestored and supported and given TIME needed. 

Im here to tell you that IT IS possible.

My daughter is living proof. 

I am not sure how you fo “ trials” on this when it should be up to us to be the captain of the ship. I don’t think you can standardize this. I think when they are ready for steps, they are ready. I think they need to do away with any and all timelines. 
Persistent, consistent vigilance!
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debra18
Yes I agree. I asked someone well respected in the field what my daughter is missing out from not getting professional help. She said that at the end of the FBT sessions my daughter would be able to eat completely independently besides for the family dinner. I didn't see that to be the case that kids finish the course of treatment and can eat independently without supervision or guidance. I agree it takes a long time. I guess it also depends on the age of the child. For those of us with young kids we can feed our children for a long time. There is no reason to be in a hurry.
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tina72
mamabear wrote:

All they need to fo is talk to the hundreds and thousands of us who are and have lived this to know the REALITY of how LONG it takes to reach FULL RECOVERY. 


I do also not get how they can set timelines and fix it into X hours of FBT treatment and then your kid is cured.
I do also not know one single case that was recovered in the timeline the FBT manual suggests for recovery.

They SHOULD talk to the experts, to us.
Keep feeding. There is light at the end of the tunnel.
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tina72
debra18 wrote:
She said that at the end of the FBT sessions my daughter would be able to eat completely independently besides for the family dinner.


Haha, that is a BIG JOKE! 😂
If that would be real, I would have paid 1000 € for every FBT session!
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
Quote:
What IS the “ evidence” to back up the ludicrous “ time frames”? I do not know of ONE single parent who can attest to this actually being what so ever realistic or actually helpful. 


I agree with you that for many kids the timelines of FBT seem remarkably short. Whilst your D is well recovered we are still working on it nine years in. That being said the reason why FBT is recommended as first line treatment IS because there is data to support its use, and further that data has been accumulated whilst using the timelines we are all criticising. I think one of the things about trials is they generally are run by experienced teams, with expertise in the condition treated so results are probably going to be much better than that expected in real world scenarios where experience may be limited, financial considerations come in etc.. This relatively recent review gives the figures supporting the timelines of FBT. I suspect that the parents may have not been quite so impressed with the timelines but nonetheless down the track it does appear as though many of the kids were doing well despite the very short interventions used. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5459462/
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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tina72
I think in most cases it might be due to timelines that are paid by insurances. For example here insurance pays 24 hours of treatment so stage 1 must be finished in his time...it is ridiculous to set any fixed time lines as the cases are so different I think.
Keep feeding. There is light at the end of the tunnel.
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Hendrixt



I wrote the stages and timelines thread years ago. It’s as true today as it was then. The whole thread is great. Take the time to read through it.
❤️

cab I have the link to the stages and timelines thread please 
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Yogi13
So while we are on the subject...once the weight is restored, and some of the ED behaviors are gone, what's next?  Does the FBT therapist support the issues which led up to the illness, or do we need to begin CBT with someone else?  I am currently seeing an FBT psychiatrist and my pediatrician.  
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Foodsupport_AUS
Yes Yogi13 in theory the treatment covers all aspects. Stage 3 is where this is meant to be addressed.
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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tina72
Yogi13 wrote:
So while we are on the subject...once the weight is restored, and some of the ED behaviors are gone, what's next?  Does the FBT therapist support the issues which led up to the illness, or do we need to begin CBT with someone else?  I am currently seeing an FBT psychiatrist and my pediatrician.  


It depends upon if there are "issues" that led up to the illness in a way of cause and reply.
In many cases there are no real issues. Many kids got thick because they lost weight due to more exercising (were put into the swim team for example or started to use a gym regularly) or because of a health class in school were sugars and fat were blamed as "unhealthy food". In my ds IP was a boy that got sick after losing 3 kg due to a stomach flue...

IF there are issues that can be avoided next time that will/must be adressed in phase 3. In all other cases you can just make them learn that they must care for themselves and avoid to ever lose weight again in their lives.
Keep feeding. There is light at the end of the tunnel.
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Yogi13
So phase 2 is where (on paper) the control over the meals is very slowly given back to the patient?  And I mean slowly.  With all of our ups, there’s many downs, and I can see that even though she’s doing well, the illness still has a hold on her.  Last night was difficult, but today is a new day.  I march on. 
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scaredmom
hi Yogi13,
"Yes" I guess is the answer for your question.
https://www.verywellmind.com/what-is-family-based-treatment-fbt-for-eating-disorders-4052371
Although it is so individual. We did some of 1and 2 together. While refeeding and gaining weight I did give some choices (ie maybe considered a bit of stage 2??) and now over one yr WR, she does have a lot  choice, like when out with friends and did a school trip (2 nights) and ate reasonably well with no supervision. 

My d is 2 years into this and things are so much better. She can choose good foods, and she can feed herself at home appropriately. We are working on some things like increasing volumes of food and  some fear foods, and eating a bit more just because you like it,  and eating outside of a routine ie 3 +3. But all in all she eats like a healthy kid. IT takes a long, long time and yes I do have to intervene when she does not pour enough juice or thinks that just because she had a small candy that was enough and she won't need her regular snack. 
The stages are more I think for the health professionals guiding us, to document "next steps" but after the refeeding I think it is a blur. You do what you have to do when needed. I hope that make sense. 

All the 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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sk8r31
For our family, we did not follow a manualized FBT protocol.  We worked with a T who had FBT experience, and we went to a program (UCSD 5 Day) that used FBT principles.  However, it was not a strict protocol, and we never discussed Stage 1, 2, or 3 for example.  But we did begin with near total control on what food was given and expected to be eaten, and gradually handed back control over the course of several months/a year.  Our d still needed structure around meals and snacks for much longer.  In other words, she continued to eat 3 meals & 3 snacks for at least 3 years.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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tina72
sk8r31 wrote:
For our family, we did not follow a manualized FBT protocol.  We worked with a T who had FBT experience, and we went to a program (UCSD 5 Day) that used FBT principles.  However, it was not a strict protocol, and we never discussed Stage 1, 2, or 3 for example.  But we did begin with near total control on what food was given and expected to be eaten, and gradually handed back control over the course of several months/a year.  Our d still needed structure around meals and snacks for much longer.  In other words, she continued to eat 3 meals & 3 snacks for at least 3 years.


Same here. No strict phases, no talking about phases at all, still on 3 meals 2 snacks in year 3 and still a lot of structure and boundaries to help to get the routine settled 100 %.
Keep feeding. There is light at the end of the tunnel.
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Yogi13
Thanks for all of your input.  
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Becs
Thanks @toothfairy for sending me the link to this thread. 

My D was diagnosed RAN Jan 19, restricting since October 18. OP FBT for 3 months then hospitalised April 19. IP since then. She has flown through the programme and is now on overnights at home (she is straightening her hair and singing full volume as I type) I've managed to get OP FBT appointments to start next week whilst she is still in IP. They will keep her in IP up to 100% if that's what we want (this is standard practice as most patients do not have access to FBT in Ireland - we are lucky) I had a meeting with the OP FBT Psychologist last week who definitely seems to be ready to move through the Stages as quickly as possible, with the goal of intuitive eating and handing back control her aim. My D is eating all meals and snacks as per meal plan, a little slower than the rest of the family, and eating extra sweets and drinks. Her weekly gain is 1kg+ and she's still only 86%.  She is asking to swap some foods out for ones she likes (eg. ice cream instead of cereal bars) She was a compulsive exerciser - no sign of that since hospital. She is telling me her ED thoughts are pretty much gone. She talks and talks. Her main issues now are self esteem and that she's not good enough for her boyfriend. But yesterday she came to the beach with me and her sister - found it hard as she saw lots of kids she knew. But she did it and felt good for it. Its incredibly early days but these seem to be her issues now. 

The FBT therapist won't move into Stage 2 until she is WR. But she did say something concerning to me when we met - I was basically saying about keeping meal plans and structure for the foreseeable future. She said she sees her job in Stage 1 of FBT to get parents to feed their kids, then when they get good at it, she has to encourage them to let go and hand back control! I'm very confused about the application of timelines/stages to us. It feels as though my D could do this quickly, but I've simply seen nothing from others' experience which gives me that confidence.

PS I've just reread the name of the thread and obviously we are still very much in the trenches, not out the other side! So sorry if this post shouldn't be here
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tina72
Becs wrote:

The FBT therapist won't move into Stage 2 until she is WR. But she did say something concerning to me when we met - I was basically saying about keeping meal plans and structure for the foreseeable future. She said she sees her job in Stage 1 of FBT to get parents to feed their kids, then when they get good at it, she has to encourage them to let go and hand back control! I'm very confused about the application of timelines/stages to us. It feels as though my D could do this quickly, but I've simply seen nothing from others' experience which gives me that confidence.


Your post is fine here, no problem!
Your therapist is right in that part, that stage 1 is total control and in stage 2 the therapists encourage you to give back control.
The big problem in many cases is that therapists and parents are not on the same page when to start stage 2. The manual says at 95% WR but that is in my eyes way too early. We did that and had big problems and needed to take back control which is harder once you have allowed it.

I personally would listen to my gut and tell the therapist that WE the PARENTS decide when she is ready to start stage 2. Not the therapist. And VERY slowly. Because YOU need to live with the consequences of a maybe bad decision and not the therapist.
It is possible that your d is an exeption and rushes through the time lines and gets recovered faster. That is possible. But it is also possible that she is very well with no or less control at the moment and the problems come back once you start to give control back.

What are the pros and cons? What are the risks? Is there a need to hurry? If not, why not give her time and let give her back control slowly?
You have nothing to lose. I do not know one parent that says "we should have given control back faster". But I know a lot of parents that say "we should have done it more slowly. She was not there when we started stage 2."

You are the captain of that ship. You decide. You know her best.
Keep feeding. There is light at the end of the tunnel.
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