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

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sunny6
I know I have asked a similar question before, but after seeing another FBT therapist, I am feeling confused.

Our child got sick about 2 years after they entered puberty.  They haven't grown any taller in the last 3 years and have essentially dropped down two percentile lines on the height chart.  Because of this, estimating weight range has been difficult.  The therapists do not believe that the restriction has caused stunting and at their current age along with puberty occurring years before the eating disorder, they have reached their full height.

Here is the struggle.  One FBT has claimed that we feed our child to their historical bmi line.  Another has said that they may be at a lower level because they have dropped so many percentiles and weight should be relative to the height growth curve (which is dramatically different, not just slightly different).

Statewise, our child still is engaged on behaviors.  However, our child pushes for meals that feel more "normal".  One cupcake versus two for a snack and believes it would help them recover if eating felt more so that way.  I struggle with this as we have seen a list of food rules and our child clearly won't eat things they did a year ago even.

Their weight is close to the bmi line as of today, but still there is all of this argument around food.  If we lowered the weight range, we likely could come down in nutrients some and still maintain this lower weight and allow food to be "normal" in quantity.  However, this lower range is actually very close to where our child's heart didn't function correctly (they also were barely eating at the time and had lost weight extremely fast) so it is easy to see why allowing them to go to that weight is concerning.  

How can two therapists who both specialize in FBT be so far apart?
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Foodsupport_AUS
Sunny6 have you involved a paediatrician in deciding where your child's growth should be? Most FBT therapists are not trained at all in normal growth and I am not sure if you are asking the right people when it comes to determining if your child has stunted growth or otherwise. There have been a few parents who found that their child grew well after the normal age of complete growth once well fed.  If you have good records of your child's growth then things like their growth velocity and age and stage of pubertal changes may be recorded too. Puberty takes around five years from first signs to full completion and there is wide individual variation as to at what stage different things happen like development of pubic hair, growth changes etc. At the time puberty can make changes on their height chart - so later bloomers seem to go down centiles then back up again whilst early bloomers go up early then come down. Early growth charts should be able to indicate a likely final eventual height and bone age assessment can help too. This picture shows the variations in growth changes for girls  growth velocity.jpg 
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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ValentinaGermania
I do understand that you are a bit confused with that but it is like always: see 2 doctors and you will hear 3 different opinions.

I do not really understand why you struggle with that. Try to believe in state, not weight. Weight is just a number. It does not say anything about their mental state. As long as their is ED behaviour left and fear food left and they are not normal again, there is no time to take the calories down. More weight is needed until their brain recovery starts and the behaviour gets normal again. It is in most cases that easy.

And as long as they are growing they need to gain weight every year anyway.
Keep feeding. There is light at the end of the tunnel.
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sunny6
I think what is confusing is that we have seen all the old behaviors come back with a lot of anger and hostility in the last few months.  Therapists say that even though they haven't gained weight in the last year, they are in a good range and on track with historical bmi, so there is no explanation for the decline.  Most of them want a second diagnosis, but no one wants to give it as they think something else is feeding the anorexic behaviors.  All agree that our child is stuck and all are opposed to increasing weight because their bmi is high.  I argued state not weight this week and was told that they consulted with world renowned EDO specialists and believed based on all the charts, that our child is right where they need to be.

In the meantime, it is difficult on our child.  Weight continues to move around but stays in range as we are always checking weight, constant monitoring, and catching behaviors.    
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ValentinaGermania
What about just let the team say and think what they want and just DO it?
You can simply increase their weight by adding more food and fats and just watch if and when the behaviour changes.
Here it was only 2 kg that made the difference. Imagine you would also be so close to recovery?
Keep feeding. There is light at the end of the tunnel.
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workingthrough

How is your child’s height charting from when she was younger? 

We’re very much learning as we go, but we noticed s’s height dropped dramatically as his weight dropped. As his weight increased, behaviors didn’t seem to get better until his height was also back to where it should be. We danced (are dancing) keeping his calories high enough for height to continue to increase, weight as well. 

I wondered if maybe her body is needing to grow a little (height) but can’t until her weight is in a certain place. Do you think she possibly has any height to catch up? 

If her height should be higher, you could look at the weight charts for that height vs. where she is now, if that makes sense? We notice behaviors popping up as s is ready for a growth spurt or right after, and he’s needing a weight increase. 

Just a thought that crossed my mind, but again, we’re very much learning as we go and not too far in. Sending hugs your way. 

 

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Mamaroo
My oldest (non ED) d didn't grow much after puberty, BUT she has gained weight. The extra weight is going to increasing her bone density and into her reproductive organs, maturing them. So, it's a concern that your child's weight hasn't increased in the past year. Like Tina said, we just ignored what our Dr said about weight targets as my d is very tall (95%) and the average charts' values were clearly not applicable to her (but trying to get that into the dr's head!). I would also remove all scales and mirrors in bedroom (we only have them in the bathrooms, and during refereeing I didn't clean them).
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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Barberton
sunny6,

I spent a lot of time trying to figure out the numbers and concluded that you cannot measure the illness by the numbers alone. I think it just distracts you from the real work that needs to be done.

We luckily knew my d weight prior to the onset of the AN which happened to be at the onset of puberty. So we knew what percentile group she was in for weight and height. We are assuming that she would continue along that same percentile group because there was no reason to assume otherwise. No one can look in a crystal ball and tell you what your child would have done in terms of weight/height.

I use blind weighs to tell me if there's an immediate problem, and to know if my d is slipping too far behind. Those requests for "normal" serving sizes, etc are all typical ED excuses. The ED can sense you have questions about what target weight you are trying to maintain. So find someone on your team you trust, set a plan based on where you think your child should be travelling on the standard growth chart and use that as your guide. If two cupcakes need to be eaten for snack to reach that goal you have set, then that's what it will take.

The most important thing to remember is that it's not the numbers, but the mental hunger/thoughts - the lack thereof - that indicate health. ED happen at any size.
Good luck. 
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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ValentinaGermania
I would want to add that especially in children and adolescents the weight is a moving target/number. And even with young adults they often need more to get recovery started than later when they are a bit more settled. Forget all numbers, go for state not weight.
Keep feeding. There is light at the end of the tunnel.
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sunny6
Thank you all for your answers.  I think finding a therapist that gets the state not weight is what is hard when so many look at our child and would not believe that they have any disordered eating and so to suggest a higher weight is hard for them.  We have tried so many different approaches with food, changing up meal plans, etc.  We seem to be stuck in this holding pattern and every time we move up, the behaviors intensify and we go back.  We keep hoping that the skills taught will start to help them.
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ValentinaGermania
This is really hard to find a good therapist. And many of us had to fight the GP in addition. In these cases it is sometimes better to have no team than a bad one. Too many kids are kept in chronic illness state because too many professionals do not go for state, not weight.
Too many kids are not even diagnosed well because they do not look "anorexic" and too many professionals do not get that you can be anorexic at any weight. 25 % of the patients are not even underweight due to BMI.

It is normal that the behaviour intensify when the ED is in a battle. It is normal that it gets worse before it gets better. The secret is to get through that state to get on the other side of the tunnel. If you go through a tunnel you get to a point where it is the darkest point on the whole way. If you go back now you will never get through. If you keep going it will get more bright again at the end of the tunnel.
Keep going, although it gets worse. Although they scream and throw plates. There is no other way to get through that state.
Keep feeding. There is light at the end of the tunnel.
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Barberton
I might add that when the ED arcs up remember that your child is in full "fight or flight" mode. Remembering that does help bring some compassion as you are trying to reassure your child to eat. I got to the point where I was just repeating "you are safe" with eat mouthful. 
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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kazi67
sunny6
weight and state both important!! 
I’d just add though our d managed to trick us (or her ED) I should say 

our d state seemed fine, all back to her normal self 👍👍
however useless GP didn’t check the scale and she had lied about her weight she had lost weight but claimed to gain 

this was my d who had not ever in the past lied to anyone was the most responsible trustworthy (loved by ALL her teachers) child you could meet so yes they turn VERY manipulative whilst held hostage by this illness

Your d may be going to have a growth spurt too so that could need extra weight I don’t recall you d age 

be very vigilant 

we got the weight on our ED d, but the ED was too strong and our d did her utmost to loose it all plus more whilst away from us 🙁

I’d say if there are still food/eating issues she needs more weight 
don’t purely rely on the professionals but In our d case too they definitely have played their part (although not the clueless GP anymore!)

its like a constant game we play (is she telling us the truth? Is she eating when not at home? Is she purging? Has she lost/gained weight??

and whilst your d may be younger than mine?? And you have control? use it if you can 
as once d older the professions keep you out of the loop (helpful....... NOT!!!!)

so very hard and tiring isn’t it 
x
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