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Honey_Badger

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Reply with quote  #301 
Oh, one more happy update -- my son was diagnosed with scoliosis about a year ago and we saw a specialist who said it was considered mild and said follow up in 6 months -- we did follow up and the scoliosis curve had actually lessened a (tiny) bit.   Dr. said that clearly son was growing a great deal in the past 6 months, the fact that scoliosis didn't get worse during this period of rapid height growth was a very good sign that it probably would continue to stay mild, follow up in another 12 months.  So, one health issue averted at least for the moment.
mdmama

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Reply with quote  #302 
Great to hear all of this good news! How interesting that he was hungry after the "double lunch" incident. That inspires me to try increasing the amount of my own D's lunch. 

Keep on keeping on!

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D diagnosed with AN November 2015 , the week she turned 12. Gaining slowly but steadily, fingers crossed...
Honey_Badger

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Reply with quote  #303 
My son keeps gaining and growing!   He is 106 pounds and about 65.5 inches!   This puts him at a BMI of 17.4 or about 11th %ile for age (15 years old).   After struggling for so long to cross the 100 pound "barrier" he's just eating and growing.

At his lowest -- 2 years and 3 months ago he was 70 pounds and had a BMI of 14 and was at the 1st %ile for his age (then 13).   My BMI goal for him is to end up at least at the 25th% for age ... that's what I feel is perfectly reasonable for him given his history as a young child.

BIG food news this weekend.   We went to a cook out at a friend's house.   She prepared hamburgers.

He hasn't eaten a hamburger since before the age of 5 from what I can remember.  At cookouts he chose hot dogs (before vegetarianism) and now that he's become a meat eater again, he still chooses hotdogs.   However, at this party there were no hot dogs.   He was hungry.  He took a burger on a bun, added a lot of ketchup just like a normal kid, and ate it, completed it!   Today he asked me if we could go to his favorite hot dog restaurant (5 Guys) because he knows that they are famous for their delicious burgers!   Meat Meat Meat!!  I love meat!

Honey_Badger

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Reply with quote  #304 
Quote:
Originally Posted by mdmama
Great to hear all of this good news! How interesting that he was hungry after the "double lunch" incident. That inspires me to try increasing the amount of my own D's lunch. 

Keep on keeping on!


Yes!   Ever since then I've been packing him double entree lunches -- a peanut butter and jelly sandwich AND a thermos with 3 servings of soup+2 T extra oil.   The sandwich is about 400 calories and the soup is another 600 calories.   Plus the chocolate milk, the doritoes or corn chips, the carrots and ranch dressing, and some kind of cookie.   It adds up to about 2000 calories and he eats most of it.   

He usually skips breakfast though (not enough time in the morning).   I think he eats some of his lunch on the 1 hour bus ride to school and back.   As long as he keeps gaining weight at a fair pace I'm letting his skip breakfast.
cnkinnh

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Reply with quote  #305 
Honey_Badger, I've been on this forum for over a year and I've glanced at your posts but never read this thread in detail until today. I just spent the past few hours reading this over, and I am struck at how similar our kids are, and wondering how I missed it before. Except I feel like you are the success story, and we are the cautionary tale of what can go wrong if ARFID is incorrectly treated as AN.

My D was treated for AN for a year and a half until her diagnosis was updated in January when we went to UCSD, and finally got some guidance on how to treat ARFID differently.

There are some differences between our situations, most notably that my D did have dramatic weight loss, for which she had to be hospitalized back in 2015. So because of that, we did have an urgent need to really pressure her to eat.

She is also depressed. It was really, really bad last December/January when she started SH and her grades plummeted; it has eased somewhat since we've backed off and are trying more to work with her, but she is still sullen and closed off, and we still have something of an adversarial dynamic around eating and drinking. For example, she has issues with fluids & she's always trying to get away with skimping on her drink portions. It is so hard for her, and she is stubborn and decides for herself whether she really needs more. Fluids are so scary for me because if she skimps, it's not obvious by looking at a scale, and it can become an emergency situation much more quickly than with food. So - she knows she needs to eat and drink, but there's a lot of power struggling going on between us in order to accomplish it. And I'm afraid I'll never see her smile at me again.

I've been working on a summary post of the differences between AN and ARFID, and how they need to be treated differently. Some of the info is from UCSD, but some is just from observation and inference, but your experiences have confirmed a lot of my speculation. I'd be interested to get your thoughts once I post it.

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14yo D, hospitalized July 2015 after losing 20lbs, followed by a horrible week in an ED clinic. No obsessive dieting or body image issues, yet misdiagnosed with RAN until UCSD weeklong treatment program Jan 2017 updated diagnosis to ARFID. Many mistakes made along the way due to not understanding the difference between the two illnesses.
Foodsupport_AUS

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Reply with quote  #306 
Honey Badger, you have done an amazing job with your son. It must be so great for you to see him come along in leaps and bounds. 
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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.
Honey_Badger

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Reply with quote  #307 
cnkinnh,

I posted more often in 2015 but check in to provide updates and to see if anyone else is dealing with ARFID.   I missed your posts I think.

Quick questions:  did your daughter have a history of severe selective eating?   Did she (pre ED) have difficulty with taste and texture of foods?   As for fluids -- will she eat high water foods like melons or applesauce?   Does she do better with thick liquids like shakes?   Do you think it is a problem with the texture of the liquids?   Have you read puddleduck's threads?  I think her son with ARFID had difficulty drinking liquids.  

I have also struggled with the difference between ARFID and other EDs and with the treatment for them.     Granted my experience is only my own, an N of 1.   So I am very wary of making any suggestions or coming to any conclusions about this illness.

But... for what it is worth I can give you my current perspective.   I think that the ARFID diagnosis is a catch-all diagnosis and probably incorporates at least 3 different conditions that should have very different treatments.   (Of course there could be overlap or co-occurring conditions as well....)  

1)  ARFID -- due to a phobia of new foods  (an anxiety issue -- treat for the anxiety, exposure, cognitive therapy)

2)  ARFID -- due to fear of swallowing (again, an anxiety issue)

3)  ARFID -- due to problems with taste/smell/texture.   (NOT an anxiety issue, although if the child is forced to eat food he doesn't like, could become complicated by anxiety.)

(of course, the longer this problem goes on, everything gets complicated by the long term malnutrition issue.   I believe that the hunger/appetite/satiety cycle gets mucked up by lack of certain minerals for instance; and sense of taste and smell can get mucked up as well by not having enough minerals.)

My son had condition #3 with not very much anxiety (some but not too much).   Personally, I am coming to see ARFID #3 (my term!) not as a brain based disorder, but as a learning disability.  Some kids have a learning disability in speech, or computation or phonemic processing; but once their brain matures enough you are able to provide rapid remediation and they can "catch up".  Well, I think my son had a "taste bud" or "texture" learning disability due to being extremely sensitive  to taste and texture.   This was causing an aversion to eating, and then it spiraled out of control.   He needed help to get the right nutrients back in, and now we are basically doing remedial eating... like he is 4 years old.... to help him catch up to his peers in being able to eat competently.

That's my current thinking about my OWN son... as I said, an N of 1.   It's been almost 2.5 years of recovery so it wasn't short term.   But I do feel he has fully recovered now... although he's still "behind" where he should be.  He is just doing catchup.

The thing about ARFID #3 at least is that, even if kids gain weight back, they will still have the ARFID so it won't be over until the selective eating is remediated.   I have a 40 year old brother who was a severe selective eater all his life and STILL is a severe selective eater.   He has no problem with his weight though... he just can only eat a few foods.   

I'm curious to hear more of what you are thinking and what you learned at the USCD clinic.   I was advised at an eating disorder clinic to require my son to eat the amount of food I thought was right for him, and I understand the reasoning behind it.   My sister's daughter had anorexia about 4 years ago, and I know that is how she recovered so I agree with the approach for anorexia 100%.   BUT, for my son, my gut felt it wasn't the right approach.   My thinking was:  "Right now, my son WILL eat.  He will eat plenty of calories as long as they taste good to him.   And he has NO anxiety.  So I want to KEEP that, and just add as much calories and nutrition as possible."  

At his lowest point, he stopped gaining weight for a year, and was sullen, depressed, cranky, irritable, angry all the time at me.  His doctor said it was just the age (13).   But I know teen irritability and this was way worse than that.  I don't believe that requiring him to eat foods he didn't want to eat would have worked, and and his BMI when we started (1st percentile for age 13) he would have ended up admitted to the hospital. I took a chance that my gut was right for HIM.   I DEFINITELY wish I had started intervening a year or so earlier.  But I didn't know then what I know now, and until he was 12, his doctor wasn't seeing anything concerning to her!

Honey_Badger

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Reply with quote  #308 
Also, cnkinnh--

I wonder if you have seen the program at Duke University?   I am wondering how their info on ARFID is similar/different from what you got from UCSD?

https://www.dukeeatingdisorders.com/treatments
cnkinnh

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Reply with quote  #309 
Hi Honey_Badger,

Thanks for your thoughts. The reason you might've missed my posts up till now because we've been treating D for AN instead of ARFID. To answer your questions:

My D is not now, nor has she ever been, severely selective. However she is, and always has been, a picky eater. So, for example, she might have some very specific complaints about food (she prefers one particular brand of apple juice, doesn't like sandwiches if they've been sitting for a while, prefers reheated mac & cheese to newly made) but she does have enough of a repertoire of food that she can get adequate nutrition. And she is able to taste new foods, but if she doesn't like them (which she never does), subsequent tastes may get more difficult. For example, she likes peanut butter, and she tasted cashew butter one time without any significant issue, but when I expected her to have some a second time, it got ugly.

Her issues are really more around eating *enough* food. The feeling of fullness in her stomach is extremely unpleasant for her, which I think is why she dislikes fluids as she does. 

She despises smoothies and shakes. Part of this is probably due to the fact that I mandated a milkshake with heavy cream every day for a while. I thought it was an AN 'fear food' but it never got easier for her to drink it; in fact it got harder.

On the difference between ARFID and AN - again, I'm working on a post about this, but as I see it, ARFID has to do with difficulties around the *physical act* of eating. AN is difficulties around the *emotional* implications & consequences of eating. Does that sound like a good summary?

As far as your 3 categories, I suppose my D would fall into the 3rd one, somewhat. Definitely not the first two. At UCSD they explained to us that picky eaters' brains perceive food differently than the rest of us. Some people grow out of it and some don't. But again, her real issue is volume - eating and drinking *enough* to maintain her health.

The UCSD program, I should mention, is not ARFID specific. We brought her there when she still had the AN diagnosis and when they observed her, that's when they changed it to ARFID. We are still doing FBT with a contract and mandated amounts of food - the main differences are that now she gets choices and we're not mandating any specific foods anymore. If I serve something for dinner that she can't eat, she's allowed to make something else of equal nutritional value.

But she is still sullen and monosyllabic with us, after over 1.5 years of full nutrition. Actually her emotional state, while it's better than it was in January, is worse than when we started re-feeding, and I think that's because we worked against her (LSUYE, Magic Plate sort of stuff that's totally appropriate for AN) instead of working with her. Looking back, I can see that she knew she needed to eat all along and I really wonder what our relationship would be like today if we had approached things differently.

I am really worried about her emotional state right now, much more than her eating. [frown]

I chatted briefly with another ARFID mom who said that she's concluded that no two presentations of ARFID are ever the same. So we can try to categorize them - that's human nature - but I suspect that no categorizations will ever be quite right.

There is a treatment program for ARFID in Boston that I'm going to look into. I'm very close to calling it quits with our FBT therapist we've been working with all along. We shall see how it goes. I'm not familiar with the Duke program.

__________________
14yo D, hospitalized July 2015 after losing 20lbs, followed by a horrible week in an ED clinic. No obsessive dieting or body image issues, yet misdiagnosed with RAN until UCSD weeklong treatment program Jan 2017 updated diagnosis to ARFID. Many mistakes made along the way due to not understanding the difference between the two illnesses.
Honey_Badger

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Reply with quote  #310 
Here's a link to galanick's review of the DUKE family program if you haven't seen it:

http://www.aroundthedinnertable.org/post/duke-weekend-7335434?trail=50#gsc.tab=0

I think Nancy Zucker at Duke U who runs the program is a specialist in ARFID.

Will write more when I have time.


deenl

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Reply with quote  #311 
cnkinnh,

Reading your post I am very much reminded of the ancient Chinese proverb

Quote:
The beginning of wisdom is calling things by their right name


So sorry that your journey has been so complicated and hope that you find the right path.

Honey_Bagder,

I am really glad that you keep touching base and sharing your knowledge. I have passed on many of your recommendations to friends. So glad your hard work is paying dividends.

Warm wishes,

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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Honey_Badger

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Reply with quote  #312 
Also -- I wonder if you have ever considered using the antihistamine, periactin, as an appetite stimulant?   It works to move food through the stomach more quickly -- increases motility.   

My son had the problem of filling up very quickly.  He had two modes -- "absolutely starving" and "full".   After just a few bites of food he wasn't starving anymore, so he felt "full" and stopped eating.

With the periactin, about 1 hour after he took it, he would become very hungry, and would eat twice as much as usual.   It didn't make him any less picky about his food.   He still hated the food he hated.   But he ate more of the foods he liked.   

The effect wears off over time, although it is still useful as an antihistamine (and my son takes it during hayfever season).   But I felt it helped get more food into him and improved his overall nutrition, and give him more practice eating and tasting foods.
Honey_Badger

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Reply with quote  #313 

Just popping in to give another update.   My son has entered his prime "eating and growing" years I think.   I don't want to jinx anything but my goodness, he seems like he has totally recovered from any ARFID or selective eating.   His appetite is the same now as any teen boy I know.   If I go to a drive through I can pick him up a chicken sandwich or a hamburger ... and really it is better if I pick up two, he will eat them both without thinking about it!  He requests: "Two orders of large fries, and can I have a milk shake AND a lemonade?"

Tonight for dinner he easily ate 1/2 pound of salmon, made in a way he has never had before (with a dill butter parsley sauce), plus about 3 Cups of spaghetti made with a new pasta sauce (garlic marinara) to which I added about 1 cup of sliced, sauteed vegetables (mushrooms, red onions, zucchini squash and peppers).  This was an ENORMOUS meal and he sat and snarfed it down in less than 20 minutes, then got up to look for dessert.

For lunch he now requests TWO peanut butter and jelly sandwiches PLUS a thermos of soup (lentil or minestrone, or black bean -- 3 servings), plus a chocolate milk, plus whatever other snack I want to put in there like corn chips or potato chips, plus a cookie.

He is still pretty lean and weighs himself from time to time, concerned that he was 108 pounds a while ago but is back down to 103.   But a quick check of his height shows that he has shot up yet again a half an inch.  I tell him that I am not in the least concerned about his weight as long as he keeps having such a healthy, normal teen appetite.   

We took a trip this spring break to visit my mother in law, who remembers the years when "all he ate was Popsicles".   This is not quite true -- all he ate was popsicles, hot peppers, olives, and popcorn.   But it is almost true, and it lasted for several years.   On this trip he was able to eat all the normal food she prepared for him, and I had to go out to the store and buy more, because she had forgotten how much a teen boy could eat!

EC_Mom

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Reply with quote  #314 
HoneyBadger, I am so happy to read this post! I have a preteen s who does not have ARFID (per our d's FBT) but has selective eating. It is so frustrating. I would love for him to just be more flexible! Why only this brand of macaroni, why only that kind of bread? 

But we have made great progress in expanding his eating. Last week he ate black beans in a quesadilla--HUGE, none of it would have been possible a few months ago. I just want him to be able to go to a birthday party and know he can eat something. Or the school cafeteria. He has gotten hungrier for sure but that hasn't translated into a much broader palate.

Still, it's better than awhile ago and we are slowly introducing new stuff, mainly scaffolding on things he likes. It is so exhausting to have eyes on d (mostly recovered from RAN) and be dealing with SE in s.
Torie

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Reply with quote  #315 
[image]Thanks for the happy report, HoneyBadger!  Love hearing how well your son is doing!  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
deenl

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Reply with quote  #316 
Thanks for keeping us updated. You continue to inspire me and many others, I'm sure.

Love, love, love to hear a happy ending.

Warm wishes
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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Honey_Badger

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Reply with quote  #317 
Quote:
Originally Posted by EC_Mom
HoneyBadger, I am so happy to read this post! I have a preteen s who does not have ARFID (per our d's FBT) but has selective eating. It is so frustrating. I would love for him to just be more flexible! Why only this brand of macaroni, why only that kind of bread? 

But we have made great progress in expanding his eating. Last week he ate black beans in a quesadilla--HUGE, none of it would have been possible a few months ago. I just want him to be able to go to a birthday party and know he can eat something. Or the school cafeteria. He has gotten hungrier for sure but that hasn't translated into a much broader palate.

Still, it's better than awhile ago and we are slowly introducing new stuff, mainly scaffolding on things he likes. It is so exhausting to have eyes on d (mostly recovered from RAN) and be dealing with SE in s.



Hang in there EC_Mom!   I know how exhausting it is.  I read here about dealing with anorexia and I know selective eating isn't as hard as that.   But I was also dealing/am also dealing with my husband's serious illness (motor neuron disease) getting worse so it is so hard to have the patience and empathy for dealing with something that frankly seems as "stupid" as selective eating or ARFID-due to selective eating gone bad.

Scaffolding (food chaining) on things they like seems to be the ticket for my son, and I'm not sure about the math term, but I think it was cumulative and... a geometric progression?   Like, getting him to like  2 new things was the hardest thing on earth... took several months... but once we had done that, the next 4 new things were easier, and then the next 8 things were even easier... and so on like that.

And here's an analogy from my own family's life that has helped me greatly.   When I was a kid my dad used to take us sailing in a small sailboat.  I was always very scared when the wind blew hard and the boat went very fast and tipped on it's side.   I remember my dad showing me how that was completely in his control.   When he turned more into the wind, it would make the boat tip more, and go faster.  But he could turn back out of the wind and slow down.  See, I didn't realize it was under his control.   Once I knew we weren't helpless, I was no longer scared and could enjoy it.

With my son, I think he was always so scared to put anything new in his mouth, and stuck with the tried and true brands of food, because he didn't know he could chance the taste or texture of foods.   When I showed him some simple techniques for altering the taste and texture, it gave him a lot more control.   I taught him how to identify the sensory characteristics of the food (This is too watery, too oily, too hot, too salty, too tasteless etc) that turned him off, and then taught him things he could do (I can add hot sauce/add salt/ use a blender/cook it longer/cook it less long/chop it more/etc) to control the characteristics.   BAM!  Much less worry about the food = more willingness to try new things.  But.. it took several years.

So, hang in there!


BattyMatty_UK

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Reply with quote  #318 
So thrilled to read about your progress with your son! What you are doing sounds quite similar to the 'contract' my son and I adopted in order to help him overcome food challenges bit by bit. Once he'd overcome one or two, we'd move on to the next and so on. Also limited exercise and stuff like that (you can see more on my blog - there's a page about our contract).

Had to smile where you say "But I didn't know then what I know now". How many times do I say this to myself these days! Ah, if we'd only known...

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Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
atdt31_US

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Reply with quote  #319 
HoneyB -- so great to see another happy post by you.  Great job to you, your son, and whole family for the way you have addressed all aspects of this.  Really inspirational!
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Mom of either pre-diagnosis or non-ed underweight 11 yoa kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006.
Honey_Badger

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Reply with quote  #320 

Three big "wins" today in the "Recovering Severe Picky Eater" category.

1)  EGGS!   Last night my son said "If you make me an egg for breakfast, I'll try it." (He hasn't eaten a whole egg since he was a young toddler)

I asked, "Poached, scrambled, soft boiled, or fried?"  And suggested scrambled would probably be the best bet as the consistency was all the same.  He thought about it and said "I'd like to try sunny side up."

I made him a sunny side up fried egg this morning and placed it on a slice of toast and served it to him along with a little hot sauce.  He folded the bread to make a little sandwich and ate it in about 2 minutes.  No poking and prodding or looking at it quizzically and nibbling.   Just ate it!   Said it wasn't his favorite but he'd eat it again!

2) BONY FISH!!   Tonight we had a small piece of fresh fish that had all the bones still in it.  He was upset because of the bones and asked me bitterly why I couldn't have just bough normal filets, but I told him this was the freshest fish I could find and I thought it would be delicious.   He very hungry and tried to eat it anyhow.  I showed him how to remove the spine of the fish carefully and screen for the tiny bones, and pull the skin off.   It didn't disgust him or make him lose his appetite.  He asked for help with the first serving, managed himself the second serving, and had a third serving!  (I gave him mine because he was so hungry!)   He then said, "Thanks mom, once you get past all the scales and bones, it was really tasty!

3)  HEIGHT!   He just looked down on me -- and I'm 5'8" (173 cm) I think he grew taller than me in a week.

trusttheprocessUSA

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Reply with quote  #321 
Win win win - great job honey_badger. Such a great update we are all celebrating with you tonight!
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Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
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