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Honey_Badger

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Reply with quote  #76 
Quote:
Originally Posted by teenboymomma
My 14 year old is ARFID as well.  I am fairly new here and we just started refeeding at home but we met with our psychologist today and he had a few good pieces of info. 
  

teenboymama, thank you for your kind words and I am sorry you also have to be here.   But this is a great group and one of the kindest and most supportive I have ever found online.

I read your son's story on your original thread and am so sorry for what you guys are going through but it seems like you have a great plan of action!   I am confused about something though.  If you don't mind me asking, because I am trying to understand the difference in diagnosis and treatment for eating disorders like AN versus ARFID.   You say your son has a diagnosis of ARFID?   I am only confused because from what you wrote about him, it sounded more like classical anorexia.   Where he had a regular, normal appetite (you say he could eat a whole pizza at one sitting!) and ate plenty of food -- i.e. he was NOT a "selective/super picky eater" as a child, but started exercising a great deal and restricted foods; and now doesn't want to gain weight.   Isn't that anorexia?

I thought ARFID was more "severe picky eating" due to taste or texture of foods -- usually starting in early childhood.   Kids with ARFID like my son (I believe -- still nor formally diagnosed if you can believe it!)   are hungry and aren't TRYING to cut back or lose weight.   But they just can't eat (or won't eat.... hard to tease this out) many foods and that can get in the way of their getting enough calories.

The big difference seems to be that kids with ARFID are happy to eat if you can get them the right food.   But if you "let" it go on long enough, I think something happens to their appetite-hunger-pleasure system.  Maybe it atrophies due to lack of reinforcement.   They get used to food not tasting good and not being a source of pleasure?   I don't know.

Anyhow I was wondering about why your son was diagnosed as ARFID but nor AN.   I do not in any way mean to pry, but am just curious and if you felt like sharing I would love to learn more.


Honey_Badger

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Reply with quote  #77 
Quote:
Originally Posted by Honey_Badger
My son weighs 78 pounds tonight!
[image] 

Tonight he tells me the scales says he is 80.5 pounds.   Can that even be possible?   Can you gain 2 pounds in  4 days?  

I haven't been massively feeding him or anything.   He's as I say mostly drinking chocolate milkshakes (maybe 400 calories per bottle) and eating french fries (500 cals per large serving).

Today he ate 5 breakfast sausages and drank some OJ and had a banana for breakfast.

For lunch, a hummus and feta sandwich from a particular store, and a chocolate milkshake.

For dinner, 2 slices of pizza and 2 glasses of lemonade and nibbles from a Key Lime pie.   This was a pretty "good" day in terms of solid food.

I really took a look at hime this evening and his face looks as pinched as ever.  He feels more "solid" though.  
Torie

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Reply with quote  #78 
Sure it's possible ... but weight is prone to somewhat random fluctuations so you can't be sure of anything from a single weighing.  Sure beats having him say it went down, though!
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PuddleduckNZ

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Reply with quote  #79 
I don't think its that clear cut.

My Son was never a picky or selective eater or an overly anxious type growing up, really the opposite in fact, before this slippery slope began.

He did become concerned about 18mths before this about healthiness, food-fat-sickness, the healthy eating classes at school. He had an episode of mild choking, he related any 'unwell feeling' to food, he had suffered constipation on and off over the years and this was also wound up in the food restriction thing. Less food, less need to go, in his mind.

Whether his anxiety came before ED or not I'm still not sure completely.

He has many personality traits of those with AN and other EDs. High achieving, black and white thinking, perfectionism, fear of failure, sensitive. But also was a highly confident and outgoing young man before this. He changed greatly in a short time.

He did also have the symptoms of AN in that he did the whole making biscuits for the class, when in fact he wasn't eating them. Eating just enough to get by.

He then restricted so much that he was skeletal, medically unstable, in hospital on a NG tube, would not drink water or swallow his saliva.

But he knew he was sick, he said 'Something is wrong with me, I CANT eat, I want to be normal.' This was intensified by medical professionals thinking and voicing in front of him that it could be parasites, coeliacs (go gluten free etc), cancer, eosinophilic oesaphagitis, etc etc etc.

He never articulated that it was a fear of fat or becoming fat that is the reason eating is difficult, EVER, and he never has since, he has no distortion of body image, he knew he was too thin and was horrendously worried about it, in a health sense. There is a thread there of the fear of fatness, but IMO it is more about an emotional reaction way back months prior to how food can make you fat and sick. Couple this with some genuine everyday childhood illness and a choking episode and you have a big horrible ED.


He restricted so badly he was dx AN and he was so hideously underweight. Lack of body dysmorphia and absence of anosognosia are big parts of an AN dx that are not present in my son. And if I understand rightly this is why he was rediagnosed ARFID.

There is some cross over for my Son, some have said they think we will need to be vigilant (of course) in case it changes into AN at a later date. Some people consider this is early AN and he may not have the ability or cognition to voice all of the illness. Not sure on that one. I think he's pretty damn sharp and if you ask him what's wrong he blames 'the croissant' and the choking/feeling sick on Easter last year.

Wow we are nearly a year into this nightmare! Its still a nightmare but we have come far I have to say [smile]





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Son 9yrs when he became unwell 2013, ED slide from April 2014, dx at 10yrs July 2014, 2 hospitalisations - dx so many times Behavioural Anorexia, EDNOS, ARFID. FBT from August 2014. Anxiety, Emetophobia. 12.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
Honey_Badger

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Reply with quote  #80 
Quote:
Originally Posted by PuddleduckNZ


Wow we are nearly a year into this nightmare! Its still a nightmare but we have come far I have to say [smile]



And Hallelujah for how far you have come!   

Honey_Badger

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Reply with quote  #81 
Question about putting weight back on:

When I look at my son now, if he's gained as much weight as he tells me he is (and I have no reason to doubt him right now) he should look much less, well, skinny.

His face still has that thin pinched look, and his wrists are skeletal.

But I took a look at him when I picked him up from school today getting into the car.   His midsection and torso actually seem pretty "solid" for lack of a better word.   He even looks a bit heavy in his thighs.   Much more "kid like" and less "wind will blow you away" than he used to look.

Do kids regaining put weight on more in some areas than others?   Does the face and wrists and such take longer than other areas?
Psycho_Mom

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Reply with quote  #82 
Sorry, I missed something.
Is your son weighing himself without anyone else present?
Why?
Even for a super-honest kid, (my d was too) the wish to tell you what you want to hear must be very strong.

There is a documented tendency I think for people to put on weight first around the middle and the face, and after that it's slowly redistributed.

best wishes,

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D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
Honey_Badger

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Reply with quote  #83 
Yes, he is.

He seems genuinely happy to be gaining weight.   I have been taking his word for it.   I tell him to go weigh himself and he reports to me.   When his weight goes down he is upset, but I tell him that these things go up and down all the time and what is important is the trend.

He is not deliberately restricting food due to wanting to lose weight; he isn't really "restricting" in that sense.  He just doesn't like the way most food tastes.  He doesn't like the texture of things.  He is very very happy to eat food, including fatty, high calorie food, as long as it is food he likes.

I don't have any reason to think he isn't being forthright about his weight.   I have been checking his height and he has gained an inch in the past 6 weeks so I know he is growing.
PuddleduckNZ

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Reply with quote  #84 
I would most definitely check the weight with your own eyes, I have no doubt my son would lie to me if I gave him that option.

We weight him with the nurse and myself to make sure it is correct.

He is not a deceptive kid AT ALL, he just wants to be at his 'goal' so bad, they said he will feel better then etc etc. Its ED who wants to lie.

Yes, my Son gained weight in these parts and then in the face, it is redistributing slowly now though.

Keep going!

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Son 9yrs when he became unwell 2013, ED slide from April 2014, dx at 10yrs July 2014, 2 hospitalisations - dx so many times Behavioural Anorexia, EDNOS, ARFID. FBT from August 2014. Anxiety, Emetophobia. 12.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
Honey_Badger

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Reply with quote  #85 
OK I just asked him to weigh himself and I checked his weight -- it is indeed what he said it was.  He hasn't been lying to me.   I didn't feel like he had been, but I guess it is good to check these things out.


PuddleduckNZ

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Reply with quote  #86 
Even if he had it would not have 'been him' if you know what I mean. Apologies if that sounded offensive.

Cover all bases, dot i's and cross t's!


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Son 9yrs when he became unwell 2013, ED slide from April 2014, dx at 10yrs July 2014, 2 hospitalisations - dx so many times Behavioural Anorexia, EDNOS, ARFID. FBT from August 2014. Anxiety, Emetophobia. 12.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
Torie

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Reply with quote  #87 
Quote:
Originally Posted by Honey_Badger
OK I just asked him to weigh himself and I checked his weight -- it is indeed what he said it was.  He hasn't been lying to me.   I didn't feel like he had been, but I guess it is good to check these things out.


Hi Honey_Badger - Good for you to check, and even better for you to have had good instincts that he was telling the truth.  It is so interesting to me how our kids are variations on a theme.  Most here (raises hand) have formerly honest kids who now lie to us and are willing to go to great lengths to deceive us.  (Well, Ed does.)  So I hope you can find some small consolation in that difference - I'm very sad for my d that she has lost our trust, and she knows we can't believe her anymore.  Sigh.

I'm not sure what my point is, other than sending you a brief note from the Could Be Worse department.  Truly glad for you that the challenges you and your s face don't include this feature.  We all here have so many challenges, it's only fair that we get a bit of a break on some aspects once in a while.

Take care.

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

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Reply with quote  #88 
Honey badger you ask about distribution of weight gain. Most find their kids initially gain it in the face and around the tummy first, for my D also on thighs as well. Then it seems to redistribute after a time. 

What you are describing sounds normal except for not gaining in the face. My D looked remarkably chubby in the cheeks while gaining, despite still being thin elsewhere. This is described by Julie O'Toole in Give food a chance. 

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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.
trusttheprocessUSA

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Reply with quote  #89 
http://www.kartiniclinic.com/blog/post/what-happens-when-the-weight-comes-back/
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Son diagnosed @ 12.5 yrs old with Severe RAN 2/11 - currently in remission. 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 continues to grow...
trusttheprocessUSA

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Reply with quote  #90 
http://www.kartiniclinic.com/blog/post/what-to-do-when-the-weight-comes-back/
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Son diagnosed @ 12.5 yrs old with Severe RAN 2/11 - currently in remission. 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 continues to grow...
gymnast64

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Reply with quote  #91 
Quote:
Originally Posted by Honey_Badger
Puddleduck, I was never able to add whole cream to milk or sauces like I read people do.   My son just tasted it (too creamy?  to oily?) and wouldn't eat another bit.   Once I tried pouring half and half (that's cream people put in their coffee -- half cream and half milk) over his cereal instead of whole milk, and he was disgusted.

So that's why I am SO EXCITED that he drank this milk shake down with no complaints.   It was Haagen Daaz chocolate chip ice cream ( a  full fat, premium brand) and heavy whipping cream.  I added a bit of vanilla as well and half a banana because it felt like I should.   It wasn't very thick.   I made it in the blender and it had the consistency more like a chocolate milk drink.   But he drank the whole thing around 4 PM and even had a little room for some dinner... chili with corn chips and guacamole.   Not a lot but still.   This is a lot more calories than he usually eats and him mood is so agreeable tonight.

gymnast64

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Reply with quote  #92 
Totally new here and seeing so much that is exactly like my 11 year old son. I was going store to store to get the right brand the right everything. Now he eats it or no exercise. But. Using shakes, nuts, bananas, and chocolate. Pastas. Breads. Trying to pack on pounds to a stomach not used to eating. Miralax to help keep him pooping since he wasnt used to having much food to digest. Ongoing process. But the first few weeks of getting enough calories in them is exhausting and mine had stomach pain and lots of crying. Still regulating pooping and eating like a 2 year old.
BLG

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Reply with quote  #93 
About gaining weight in certain places, I've noticed the same thing. My 16 yr old son is refeeding and gaining weight. He also still looks like he's a skinny kid-thin face and arms, but his belly is growing and his thighs fill out his jeans more. I'm wondering if the belly is bloat, as he still complains of a stomach ache. He's about 9 pounds from his goal weight but still not growing out of the pants he's has since he was 14.
Torie

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Reply with quote  #94 
Interesting.  My d falls into what I've read is the "common" pattern with weight going first to belly and face.  I'm starting to wonder if that is girl-pattern gain, and for boys maybe belly and thighs is more typical?

Anyway, yeah, it lands where it lands and then redistributes from there.  Might take a while, though.

-Torie

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Honey_Badger

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Reply with quote  #95 
Yeah, it is torso and thighs for my son -- not seeing the "chubby cheeks", at least not yet!
SCL

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Reply with quote  #96 
Girl in the midst of refeeding here.  Definitely seeing weight gain in the belly and face/neck area.
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Mom of 15 year old daughter, RAN diagnosed Nov., 2014.  WR June, 2014.
Honey_Badger

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Reply with quote  #97 
We are finally supposed to have our first appointment at the ED clinic this week and now there's a big snowstorm predicted..... grr.

Also -- interesting thing with zinc.   A few years ago I started supplementing with zinc b/c I felt my son wasn't getting any in his diet.   (no meat, no eggs, no shellfish, few nuts, etc). It is supposed to have an effect on appetite.   It did -- I gave him the zinc for about 2 months and did seem to note an increase in appetite.   But he didn't like the taste of the zinc and I stopped giving it to him.

Last month I started it up again -- found one he didn't mind too much (chewable - 8 mg 2x a day)   I did note an increase in appetite with it.   About 3 - 4 days ago we ran out.   Coincidentally, his appetite has plummeted the past few days.   He is back to being really irritible too -- super picky about the smell and taste of food, picking at his food etc.  I ordered more but it won't be here till next week.

So I went out this morning and found a different zinc supplement (20 mg 1x day) I thought he might be able to tolerate... gave it to him... appetite is BACK.  We went out to dinner and he basically didn't stop trying to eat (he didn't really like the food all that much, but he kept eating the rice, looking on his dad's plate to find some rice noodles, etc. And now he is having a hot chocolate and some popcorn with butter on it.)

Is this just wishful thinking?   Self fulfiling prophecy?   I don't know.   The zinc isn't a magic cure or anything, but it seems like it is a lot easier to feed him when he at least meets me halfway with some appetite.      I don't know if it has an effect that fast though, but it really seemed like the days without the zinc he just had a lot lot less appetite.
Honey_Badger

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Reply with quote  #98 
We did finally have our evaluation at the ED clinic (braving the bad weather)  My son did get a diagnosis of ARFID and they are very happy with his weight gain so far -- 8 pounds from late Dec. and 3/4 inch as I had measured at home.  I liked the Dr I met with; she was pretty honest that treatment for this is a bit of trial and error.  She seemed really supportive of everything we have been doing so far.  We are going to work with a therapist weekly for a while as we have a few different issues to work with.   The Dr thought I didn't need to meet with a nutritionist, at least not right now; she said I knew how to feed my family and seemed to be able to put pounds on my son; I just needed maybe more strategies in place to help him eat more and not get full so fast; and to help him branch out into other foods -- that I needed to feel less isolated and like I had some more medical support -- exactly what I've been feeling.   So it went better than I expected it would to be honest.

ETA: She did say he was a little orthostatic.  Nothing too concerning but we'll keep an eye on it.
Honey_Badger

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Reply with quote  #99 
Oh forgot one more thing:  I shared his height for age, weight for age and BMI for age charts.   I mentioned that I really thought he should be around 25th percentile for weight -- that's where he historically has tracked since around age 6.  She went back even further to age 2-4 and said she thought it more likely he should be up at the 50th %ile where he started out!   Heightwise she agreed with me he should be around 40th%ile where he has tracked most of his life.   But she didn't mention anything about numbers in front of my son; nothing about calories either.   The focus was one eating food and expanding variety of food.
PuddleduckNZ

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Reply with quote  #100 
Great stuff!

Sounds positive.

I have been told also, I clearly know what I'm doing food wise, feed like the mama you are.

Which is nice and comforting/validating, but doesn't help much with the slowness and fussiness and all the rest of the behaviours huh!

I also have a similar story with my sons growth and tracking, he has been historically between 20-45 percentile through his normal growing years, we are aiming for 35th (sounds impossible!). This also took into account our lean builds/body type as parents.

My Son had a decent growth spurt recently so is creeping upward (15%) weight (13%) BMI 15 (Though we don't take much notice of this). Still far to go. At his worst was off the bottom of the chart for weight percentile and 4% for height.

I hate ED.

From everything I've read and people I've spoken too, aiming higher is always going to be better, especially with growth. I have already seen this in my son, literally stuffing him with food, no weight gain, but grew another cm.

I remember early on people telling me of JUST HOW MUCH it will take to feed the young ED child and get them back on track and then to maintain/sustain them through their heavy growth.

I underestimated this statement!!

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Son 9yrs when he became unwell 2013, ED slide from April 2014, dx at 10yrs July 2014, 2 hospitalisations - dx so many times Behavioural Anorexia, EDNOS, ARFID. FBT from August 2014. Anxiety, Emetophobia. 12.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
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