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

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Enn

I thought I would post some of my thoughts here. They are random and are just my lay opinion about my experience with my d and her ED. There is really no consensus on how to determine a weight. The paper posted here from the Canadian Pediatric Society does mention that the target weight SHOULD be reassessed every 3-6 months or as deemed necessary based on growth. That does make sense to me as the child is growing and puberty will affect growth in height. (the gonadal hormones do affect the growth plates)

https://www.cps.ca/en/documents/position/goal-weights
"the TGW will be monitored, recalculated frequently and adjusted based on overall health."


http://cedd.org.au/wordpress/wp-content/uploads/2014/09/Minimum-Weight-Range-and-Achieving-Regular-Weight-Gain.pdf

I know we discuss this on and off on the forum. I guess I feel that there is no max of weight they should gain. That is my bias of course.

My thoughts always go to: what is the harm of more weight? 
Many have noted that the teams have set their kid's target too low. We had no growth charts for D from age 5 and she was at 25% weight. She was always really thin as was her brother. Older d was always 50% weight and 75% for height and we are pretty average in height but "fine boned" (whatever that is). 
So they looked at our family and our ethnicity and our sizes in comparison to the average population and came up with 40% for d's weight. 
I have posted before that d had to get to 50% and more to really get better but again I am not sure if it was just time of having proper nutrition.  Would she have been OK at 40% as originally projected? I don't know, but I will not let her get back to that 40%...


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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Enn
https://www.scienceofeds.org/2014/02/04/setting-a-target-weight-an-arbitrary-exercise/
https://www.eatingdisordertherapyla.com/are-we-setting-recovery-weights-too-low/

I am not sure from my limited reading that there is an answer. I am just thinking out loud.
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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ValentinaGermania
I am sure this society is so afraid of having obese people that they tend to overreact with that totally.
Nobody did look for something like a target weight or even weigh his children at all 30 years ago.
There are healthy normal kids accused to be overweight at age 4 now. This is sad.
In German we say they "pour the child out with the bath" - do you know that say?
Keep feeding. There is light at the end of the tunnel.
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sandie
It seems like there is no one answer for all kids  based on what we currently know.
what I know is that some clinicians use return of periods as indicator of recovery and blindly ignore other parameters and that is dangerous, as some kids menstruate at low weight. 
It seems logical that weight and historic growth need to be considered and whether height is stunted, and perhaps also a safety net due to genetic predisposition to anorexia. 
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
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Foodsupport_AUS
Great thinking out loud Enn. It is definitely a question that poses as many other questions as it answers. The discussion on our recent tough topic interview https://www.feast-ed.org/event/tough-topic-thursdays-parents-know-best/  raised some questions about it too.

Some here are convinced that the thing that led to their child's recovery was sufficient weight gain alone, and that the reason others don't see recovery is that there is insufficient weight gain, others have had a lot of weight gain and failed to see improvement so look for that other missing ingredient. 

There seems to be a disconnect between what is physical health and the weight gain required for that - normal cardiac, and reproductive health - and mental health. If physical health is obtained should we just keep on working on mental health or is the lack of recovery only because more weight is needed?

An interesting thing that I have thought about is what happens when people diet. There is an increasing body of research out there looking at those who lose weight through dieting and the physiological changes that occur. There are hormonal changes that are present even two or more years out from that weight loss, even if weight is steady, that is the physiological drive to regain the weight is very high. Those changes only go away after an overshoot of the previous weight. Does this make a difference to our children when we are trying to re-feed them? How does it apply to children?
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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sandie
It would be good to read the paper that the tough topic talk was based on to understand it more. The link provided was to an article that described it but you need an open Athens password to read the original article although you can subscribe I think. I think I can access a password but many won’t be able to. What I couldn’t see mentioned anywhere was timeline, ie at what point did they measure recovery? 

It seems quite simplistic to me that weight gain could be sufficient by itself. Human beings are complex and generally accepted that treating people holistically is the standard we should be aiming for, for wellbeing. 
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
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kazi67
To be honest I would LOVE to see another 5 even 10 kg on my adult d
BUT unfortunately I can’t force feed her!
i just can’t!

i remind her, ask her questions, shop, cook, stress and worry, communicate daily about things other than ED, support and love her to bits!!

she is living a life worth  living, working, (part time), socialising, volunteering, taking care of her self keeping up appointments, she is eating a variety of foods (just not as much as I’d like her to) but I really don’t know how I get her to eat anymore
she is an “adult” and can leave home if she so wants and do what she wants really so in our situation we think she’s doing ok 

In the beginning when I was in”control” of her cooking, supervising her eating sitting with her an hour after eating or take away phone, computer, car etc if refusing this worked for a while 
i was told “you don’t need professional help”
you  can do this! Well yes I thought I could too but in hindsight it’s a very serious life threatening physciatric illness with the highest mortality rate and all I can say is IF POSSIBLE  GET THE PROFESSIONAL  HELP YOU NEED!! 

Well yes in the beginning we  got the weight on her but her mind completely freaked out, she left home (18 by this stage) she lost all the weight plus more, hated me and got herself to the point of nearly dying and we have spent the past 2 years dealing with the fallout 

everyone’s  journey is different 

so yes weight WR is important BUT I also believe having expert guidance and support is critical along the way for the patient to help deal with their changing body and also if they are unfortunate enough to have co-morbids, anxiety, SH, depression, these don’t always just float away with weight gain 
my d SH, anxiety and depression was through the roof whilst weight gaining in hospital 

some kids listen to the professionals more than to their parents also

for those who have done it alone and WR cured all 
i salute you
i don’t know how you did it but then it’s a spectrum I think and there are possibly more severe/extreme cases I’m not sure 

thanks to the forum for  support and sharing thoughts and ideas, always nice to know we are not alone 

I do wish we got the expert help from the very beginning 
but I guess the main thing is she’s doing well now
dx 17.5, 21 in a few weeks and she is doing ok
Life is kind of back to a”new normal”
👍😄
x
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Enn
I think everyone above  has made some great points that make my brain ache.  Thank you!

I too believe that there has to be more to this than just weight gain and more weight gain. We all know people here who had kids gain ++ and they were not fully recovered. And others yes more and more weight helped. But where would that stop? How much more?  But was that just a time thing and those families dealt with the child’s other issues informally so that they recovered, brain maturation, different environment? 
I agree with you sandie that we are so complex that how could weight gain be all that is required? 
Maybe there are different genotypes of ED? Some may respond to food and weight gain only. Some are more attached to SH or OCD, exercise, but not at all equally. 

I hope one day with the genetic study published in July, that they will have a medical test, blood or radiological to tell us the metabolic pathway for that particular person’s ED and come up with targeted therapy for that specific genetic abnormality. (reminds me of all the diabetic drugs out now that target the different pathways that affect blood sugars- there are some genetic variants of diabetes that respond to one drug better than the other typical ones)


What timeline defines recovery? One year with good thoughts and weights? 5 years? 20 years? Do we really know? 
If d is doing well for 4 years then slips?? Then what is that called? Relapse or did I not get her weight high enough? My fault? 

We know that those with ED should not diet. So if in fully recovery shouldn’t it be gone/ cured  and they could consider a diet?  I am not advocating that but if they are truly normal then by definition they are normal and could do  those normal things.  I understand the genetic risk, but if it’s gone now why not?*   So if it can come back then I say they are not truly recovered/ cured.  If the triggers can still affect them ie weight loss then we know to keep them  in remission not cure, those terms are truly different. 

Recovery, remission, cured. Not sure if they are the same at all. 
I don’t think there is an answer here at all. Again just musings. 

@sandie 
have you watched the video. It was helpful as it did discuss a few of these things a bit.

* Please know that some of my questions are rhetorical. Just what is going on in my brain as I ponder my d’s trajectory.
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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debra18
Interesting discussion. I stopped weighing my daughter a year ago. It was obvious to me she was having a blip in the summer when period stopped and she started hiding food again. I was able to supervise all meals for some time as she was home on vacation and now she goes to school half a day and home school the rest of the day. She is back on track as periods returned and she stopped hiding food as well as a variety of other factors. I never used any professional help as I haven't really found what I thought would be helpful for her. I do think we are missing some part of the equation.
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Torie
In German we say they "pour the child out with the bath" - do you know that say?

Here it is "Don't throw the baby out with the bathwater." xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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sandie
Hi yes @Enni,I watched the video. I don’t remember them mentioning the time-point at which recovery was measured. 
The 4th blog by the authors of the whole genome study published this summer((Foodsupport sent the link to author’s blogs I think) was about the author’s reflections Including the need to avoid getting into negative energy balance for life. I understand some people who had ED as child can relapse many years later as adult. So does that mean they were in remission rather than recovered or that they remain at risk. Need to think about these definitions. 
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
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Foodsupport_AUS
@sandie I have only seen excerpts of the paper too, however there are quite a few around. The paper is based on a survey which was filled in by many parents on the forum and lots of other caregivers. There were links here and on the FB page. In the questionnaire parents were asked if their children were recovered, along with how they defined recovery. On excerpt which I can't find now mentioned various time lines depending on what was being considered as part of recovery -weight came first. I found this which is the link to the actual paper. https://onlinelibrary.wiley.com/doi/abs/10.1002/eat.23200
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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Kali

Thanks for posting this, Enn, it is an interesting discussion. Here is another thought.

I always wonder about the target weights for the smaller kids solely based on their growth charts. For example my daughter tracked between 2% and 10% for weight during her childhood. So I could say that based on her growth charts that she is weight restored now, however I don't feel that 10% on the growth chart, which gives her a bmi of 18.7 is appropriate. But she is fully functional at that weight and claims to be recovered and her state seems good. She is doing very well socially and excelling academically even though she still has some co-morbid anxiety and depression which she is on medication for. She eats with gusto and has gotten good at meal planning and cooking. And I remember feeling fine at that same weight when I was young as well. When she was very ill she was not even anywhere near even being on the growth chart. And every time we have gotten her up to 20%, which we have done 3 times at this point after truly massive amounts of food during refeeding and which I would prefer, the weight seems to fall off again after awhile. One of her uncles recently had a dna test and it showed up that he has a gene which makes it very difficult to gain any weight. Has anyone ever heard of such a thing? I will also add that she never lost her period when she was very unwell, it was slightly irregular but she was in that group of patients who continued to menstruate when their bmi's reached down to the 16s. 

I think it is highly likely that she never weighed enough during her childhood and that the historical growth charts don't reflect what she should probably weigh now. The target weight we were given was higher than her historical growth chart would indicate so she was not given a target weight that was too low in my opinion. But we can't seem to keep her at that higher weight, and not for lack of trying. Meanwhile, she is not underweight and doing perfectly fine. So is that recovery even though we couldn't keep the weight up higher? It seems to fly against the common perception from parents here that that weight needs to come up higher than it ever was to see recovery. However, the most dangerous symptoms such as suicidal ideations and the self harm and the purging have ceased. 

And I'll also add that because my opinion was always that food alone was not enough to recover from anorexia, (even though I believe that there is no possibility of recovery without also normalizing eating), she had massive amounts of therapy of all types throughout the whole process and still sees a therapist. Over time, that has evolved into more of a relationship where she has a trusted advisor and someone to discuss what is going on in her life, rather than being eating disorder specific. 

Anyone else with a similar story?

Kali

Food=Love
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Torie
Kali wrote:
And I'll also add that because my opinion was always that food alone was not enough to recover from anorexia, (even though I believe that there is no possibility of recovery without also normalizing eating) ....

I'm curious what you mean by that, Kali.  Do you mean you knew your d (specifically) would need additional treatment or are you speaking about the population in general, that food alone is a) sometimes b) rarely or c) never enough alone? And also, do you mean that food alone is not enough to defeat AN, or that there are pre- or co-morbid issues that will need to be dealt with also?

For my d, food (plus time) was enough to vanquish the AN. I think that is true for many / most, although one never knows if pre- or co-morbid issues will remain to be dealt with (as with my d's anxiety). xx

-Torie

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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debra18
Kazi and Kali I respect your opinion about the need for therapy and professional help. I just wanted to say that there are many more things that I do with my daughter (and other parents can too) to help her develop appropriate coping mechanisms for anxiety and to learn that food restriction cannot be used to deal with anxiety. So it's not feeding alone.
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MKR
I agree that WR alone is not the entire solution, but it provides the sufficient nutrition for the brain to switch away from Fight-or-Flight and start recovery.  When I read that the malnutrition results in a brain trauma, I have been treating recovery from ED like a post-brain injury recovery and have patiently allowed more time. 

I also read in a recent study that people genetically prone to ED are less prone to diabetes, almost immune. Yay!  This will help reassure my D to keep up sufficient nutrition. When she has recovered...

As to growth charts, I see that we need to factor in growth spurts. They can easily cause a dip and all the accompanying drama.  The target weight (and height) could be anyone's guess. My side of family are very tall (except my dad and me), the father's side are very short.  How are we to know when our children have reached their full growth?

In the past year I have spoken to a number of recovered anorexics.  Some have had relapses, some had intensive therapy, some had useless old-fashioned therapists digging around the family dynamics for causes (this was prior to recent findings on genetics), some had switched from AN to bulimia. One got simply "tired and bored" of the secretive lifestyle and the exhausting ED thoughts and moved away.  (How I wish my D were strong enough to see that.) The best news is that brain has the ability to grow new pathways and re-wire. How we are going to go about it is probably different for every family. 

You know your child best, can best spot "odd" things. Trust your instinct and call for help if you feel you need it. 


Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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kazi67
My d is getting better be it  it a slow process
but everyone on the forum tells us how much time it takes for brain healing 
she is doing very well atm and I am so proud of her!

my d was incredibly sick, 2 years IP treatment,
 my d is 21 next week (I do believe dealing with an older patient is slightly different than a younger child) as we do want them to become independent at some point don’t we?  well I do anyway)

so if I feel we need professional help as part of our/her support network/village to help her through her journey and she tells me it helps well I’m darned sure I’m going to do everything possible and use every service available to help her
in the beginning we didn’t and she ended up VERY ill
my d was also suicidal and SH (sorry if I felt I need professional help to deal with this I wasn’t going to sit back and let her commit suicide!!)
of course food, eating and WR (which my d is) is critical but a life worth living after your ED is too, and together we are all trying to help her move forward I believe it takes a village 
I also have had my own health issues to deal with so having others to help support my d is right for our family
we all find the way that works for us and I don’t think downing someone else’s journey is the way to go and that’s how I do feel with your comment “many more things I can do with my d and other parents do too”
do you think I don’t do anything with my d or tried 
jeez this forum is supposed to be supportive 
not feeling that just now 
🙁
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Enn
Oh Kazi,
My interpretation of debra18’s comment was that she was very supportive of you and your journey. I think she recognizes that by giving your d what she needed is the right way to go.
debra18, I feel was highlighting that she feels that food alone was not enough and that by supporting your child yourself AND getting professional support is key. 
Her last sentence says that it is not feeding alone, exactly what you said.

i think there is so much more to ED than is known. And it is not at all a simple formula. 
I have my d on meds and therapist is working on the rigid thinking now. Nutrition is the corner stone of treatment that is for sure AND getting other treatments as needed for your child is the other crucial part. 
kazi you have done so well with your d. I admire your honesty with all your posts. You have come so far with your d. 
Sending a hug 🤗 
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
Thanks Enn, possibly I’ve taken the comment the wrong way?
im just trying to stay on top of things, learn as much as I can, always worried this rotten illness is going to come back 
my d on medications too, my d used to have the NG tube 24/7 plus anti anxiety meds to be able to eat
it was the worst time of our/her life it was just awful and I’m sure as hell I DONT want it to come back EVER!!

she/we are moving forward and I try to share so possibly others can learn too? 
Sometimes I get the feeling in this forum it IS only all about food and doing it yourself and if you don’t succeed, somehow your not strong enough or not trying hard enough and a failure 
I’m not sure this is the right attitude as it’s very hurtful to parents/carers if you doing your best and it’s still not working 
and god forbid you NEED professional help 
keep feeding everyone 

it really does get better and you WILL get your kid back it just takes a lot of time, food, love, tears, heartache, and frustration 
but it IS worth it!
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kazi67
I liked this, hopefully it’s readable!
B86045D1-3709-428D-851E-6398C8F64C20.png 
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Enn

I would agree with you @kazi67 about the focus on just the food. And it is such a vital first step and pillar of treatment, but to ignore the other parts of that child/person and not address them would be terrible.
I wonder if others who have found different ways as well as the nutrition don't speak up enough?  I think that has to change. I know quite a few whose kids adult and children who needed a lot more than the food. They needed help with psychosis and SH and severe depression gender dysphoria and a whole host of things they needed professional help to navigate.  That is why it is so important to share your story. You have so much to teach others. Everyone's story matters and no one should ever feel that they will be attacked that they just "did not do enough" or just did not get the weight high enough. There are other ways that are just as valid on  top of the nutrition. *Please note I am not saying at all, that nutrition is not important* 


I know emotions can run so high, when we have literally been tossed and turned and ripped apart so it is easy feel a bit off with some posts. 
The written word can be hard to interpret on a forum. Our first rule is alway kindness, and civility. I think we do a good job overall
XX

Ps love that picture. It is so true, anger maybe what we see, but there are a lot of emotions underneath, that we all should be aware of.

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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debra18
I did not mean to make you feel bad kazi. I always feel the other way. That people criticize those that do it on their own. There are many factors involved. I support everyone and how they chose to go about it. I am saying that even if my daughter did not go to therapy there is a lot more to just feeding. I  support you kazi and everyone else here.
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Foodsupport_AUS
kazi67 wrote:
 Sometimes I get the feeling in this forum it IS only all about food and doing it yourself and if you don’t succeed, somehow your not strong enough or not trying hard enough and a failure 
I’m not sure this is the right attitude as it’s very hurtful to parents/carers if you doing your best and it’s still not working 
and god forbid you NEED professional help 
keep feeding everyone 


I know that others feel this at times too, but as @debra18 has said sometimes she feels the opposite is true. 

I think when we are all under stress we can misread cues, which are always much harder to interpret on line. 
I would like to think we are much more about finding your own path - the FE of FEAST is for Families empowered. That is so much of what we are trying to do. Some really can do it on their own and do a great job, others can't for all sorts of reasons. It should never be that we feel guilty because we are "not doing it right". 

I too remember feeling completely inadequate when my D first became ill, and probably for the first few years of treatment. How could other families do things that I just found impossible? I still feel it at times, but I think that is much more about me than it is about others on the forum. We are a group of parents with kids with eating disorders. We mostly share the genetic material of our children, so we in turn are more likely to have a number of those predispositions. We need to not let that turn against us. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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Kali

Lots of great comments on this post.

@Torie I wanted to address your question to me about my comment.


Quote:
My opinion was always that food alone was not enough to recover from anorexia, (even though I believe that there is no possibility of recovery without also normalizing eating),


I look at treatment, recovery and remission in a holistic manner which can be defined like this:

Characterized by the treatment of the whole person, taking into account mental and social factors, rather than just the symptoms of a disease.

So for example, in addition to refeeding and having adequate nutrition, we accessed support in other therapeutic ways to help her process what she had been through and also to try and move forward and heal our family. We had self harm, purging, suicidal ideation, an exercise compulsion, food refusal and a weight completely off the bottom of the growth chart to work through which is quite a big project and involves a very multifaceted recovery. We had help from an FBT therapist, individual therapists, psychiatrists, social workers, dietitians, MD's specializing in eating disorders, CBT, a family DBT group, REACH therapy, medication, Residential, IOP, and PHP. In addition once she started eating again we also had 3 meals a and 2 snacks a day and eating became non negotiable. It truly took a village and I am thankful to each and every person, including you, who helped us in any way. I truly believe my daughters recovery wasn't something I could have done on my own at home just with food because her illness was, like so many others, complicated and also involves comorbid depression which did not go away after weight restoration. In addition to that we worked with our d. to try and identify goals for things she might like to do and have in her life if she were well. Creating a life worth living as they say in DBT. And then we helped her make concrete plans to achieve those goals and cheered her on every step of the way. 

Hope this explains what I was thinking when I made that comment. 

warmly,

Kali


 

Food=Love
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Barberton
Zylie makes the comment: 

The best news is that brain has the ability to grow new pathways and re-wire.

If we agree that restoring weight is the first pillar to healing, then the second pillar should be re-wiring the neural pathways. Whether this is done with the help of a therapist or done at home, it seems to me to be the logical next step. The person gentically prone to ED needs to learn how to manage the brain's inclination to switch into survival mode when energy deficit occurs. 

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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