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C_kallaher0428

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Reply with quote  #51 
Our 12 year old daughter has diagnosis of ARFID. She is being seen at the eating disorders clinic at Mass General. It may be far for you but they might be able to refer you to someone in the DC area. Good luck!
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Reply with quote  #52 
Quote:
Originally Posted by C_kallaher0428
Our 12 year old daughter has diagnosis of ARFID. She is being seen at the eating disorders clinic at Mass General. It may be far for you but they might be able to refer you to someone in the DC area. Good luck!


Thank you C_K!   If you don't mind, can you tell me anything about her treatment there so far?   I am curious how the treatment is similar to or different from treatment for anorexia and or bulimia.
Honey_Badger

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Reply with quote  #53 

Well, it's been almost 4 weeks since we saw our pediatrician; at that time my 13 yo son weighed 70.4 pounds (32 kg) and stood 4' 10" (147 cm).   He's now 74.6 pounds  (33.8 kg) and stands 4' 11" (almost 150 cm) measured at home.

I think that's a good gain for 4 weeks, but because he gained in both height and weight he's at about the same BMI percentile for his age -- quite low -- maybe went from 1st to 2nd %ile.

 

This gain came with INTENSE effort on my part.  I haven't had to **force** him to eat but I have had to cajole, remind, tempt, and buy only his absolute favorite, most tempting foods.  Lots of trips to the drive through, etc.  It's been my major focus of the past weeks.  

I've learned to change my shopping and cooking habits.  Some changes have been fairly easy. I'm reading labels and seeing how much a difference it makes just to buy the higher fat version of whatever product.    I'm now always mixing a T or two of butter or oil into his rice or pasta sauce; adding oil to EVERYTHING; adding 1 T Heavy Whipping Cream to his glass of milk or chocolate milk.  I realize I am fortunate in a way because my son is happy if I pour stuff and bring it to him.  

 

What I am optimistic about is that he is eating a little more meat and it's becoming less of a big deal.    It is still only 5 things:  

1) ready to eat (precooked) sausages - pork - Banquet brand
2) Chick Fil A spicy chicken sandwich (usually only eats about 1/4 to 1/2
3) certain type of frozen salmon- no bones, no skin observable; cooked with tons of lemons and capers
4) turkey sandwich, one slice turkey, sourdough bread
5) bacon cooked to a particular degree of crispness

But he has been asking in advance about these foods and eating them with less reluctance; even occasional enthusiasm.

Two new meats I gave him this week were a slice of ham on sourdough for lunch (he ate a few nibbles) and smoked peppered trout (again, a couple nibbles, he said he'd be willing to try it again.
 He also ate a few nibbles of some red meat this week -- meatballs in a spaghetti sauce.  I truly believe that when he allows himself to eat meat again he will be in a much better state.  His body is craving this nutrition.   As he is getting more calories in, I think he becomes a little less restrictive in what he is willing to try.

He likes milkshakes so I bought an actual milk shake maker (seems to make it more smoothly than a blender does?) and have been making milkshakes with heavy whipping cream and high fat chocolate ice cream.

galanick

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Reply with quote  #54 
Have you looked into OT for support. We haven't started OT therapy yet, but they say they can help with selective eating.

Way to go with weight gain and adding new foods. Little jealous of your progress with all the new foods, mine won't eat most of that stuff. You are really doing wonderful. He is young and may be behind in growth so you may be chancing growth for awhile. But, growth showed how well you have done this last month. They won't grow until body feels safe about food

Way to go

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Honey_Badger

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Reply with quote  #55 
Quote:
Originally Posted by galanick
Have you looked into OT for support. We haven't started OT therapy yet, but they say they can help with selective eating. Way to go with weight gain and adding new foods. Little jealous of your progress with all the new foods, mine won't eat most of that stuff. You are really doing wonderful. He is young and may be behind in growth so you may be chancing growth for awhile. But, growth showed how well you have done this last month. They won't grow until body feels safe about food Way to go


I am looking into OT to see.   I am hoping that if I just get more pounds on him, he'll be a little less picky?   I am probably in denial....

The thing about my son is that, for a picky eater, he did eat a pretty wide variety of foods.   I think that's why his doctor wasn't so concerned.   I've read about kids with Selective Eating disorder, who just eat maybe 5 or 6 things.   My son always was able to eat more than that -- and could eat asparagus, green beans, avocados, green peas, seaweed --- so I don't think it looked like Selective Eating Disorder, exactly.

But he was so, so so particular about how those things were cooked and prepared.   And that hasn't changed at all.    To give you and example:   he WILL eat green beans.   But this is how you have to prepare them:  first steam them in a steamer or microwave.   Then, coat with a little peanut oil.   NOT olive oil.   Sprinkle just the right amount of salt on them.   Put them in the broiler and broil until just crispy.   5 minutes.   Not 6 minutes -- to burnt.  Won't touch.   Not 4 minutes.   Too crunchy.   Won't eat.

So, IF I make them exactly right, he'll eat 3 cups full!   Very happily.   If I overcook them even a bit, he'll see them, be happy about them, take a bite of them, and be like "oh, these are no good" and be SAD that he can't eat them.

Does that make sense?   So it is really really exhausting for me to cook these damn beans.   Because I'm a normal mom with a busy life and kids and all, and sometimes, I don't know, the phone rings while I am cooking the beans, and I get distracted.... and I forget to pull them out at exactly the right time.   And then they are "overdone"  (by no one's standards but my son's of course), and the rest of the family can eat them just fine, but my son can't.
Honey_Badger

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Reply with quote  #56 
There are two things I looked into a year ago, but didn't follow through with.

One was the role of zinc (or zinc deficiency) in sense of taste and smell.   I've read some places that when people are low in zinc it can alter their perceptions of how foods taste?   My son having been a vegetarian who doesn't eat eggs for so long probably is very zinc deficient, I though.

The other was a speech therapist in our area who works with younger kids on selective eating issues.   She does work with something called "Food Chaining" and "Sequential  Oral Sensory".   I called her and she said that she can work with adolescents, but they have to be "into" it.   I didn't think at the time that my son would be willing to participate and then at the time it seemed he was putting on more weight so I never followed up any more.
galanick

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Reply with quote  #57 
my d3 is typical selective eater. Cheerios, chicken nuggets, toddler food. But D1, is about texture and how it looks. Eats tons of raw fruits and veggies, will not eat if cooked. Loves yogurt but has to have correct concistancy. Only eats certain brands / flavored. To me the difference between picky and selective is picky will eat it if hungry enough. Selective will refuse even if hungry. They said OT helps if sensory issue. Getting OT assessment was easy, I filled out some papers and they watched her eat something she likes. She picked Cheerios. After watching her eat, OT said they thought OT would help. Not really sure what she was looking for. She did ask how many meals did I prepare for dinner. The answer three. One for d1, one for d3 and then normal food. I totally understand how exhausted you must be. Even cooking one meal is hard. But, catering to there pickiness brings to another level of hard. It becomes unsustainable. But what choice do you have because they just won't eat something they don't like. OT is more readily available than Ed treatment. We are wait list only because of school issues and I don't want to take her out of school. Could start next week if could take noon appointment. Her school is an hour away so she would miss 3 hr and With drive it would take 5 hr of my day for 1 hr appointment because of locations. Might be worth having assessment. Are you getting much help from Ed team. Have they checked for sensory issues
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PuddleduckNZ

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Reply with quote  #58 
honey badger.

Some of the things you say could come from my mouth.

My Son was/is the same, he was NEVER a picky eater as a younger child, and would eat most everything.   

It just came upon him like a wave, he dropped things and became over the top about what he did eat and how it was prepared. If he thinks something is too soggy, salty, crunchy, undercooked, overcooked or just the 'anti' switch is flicked, there is no going back. Then came the swallowing problems and it all compounded together. Its all disordered.

'asparagus, green beans, avocados, green peas, seaweed' This could be my Son, he loves these foods!

Catering to this is catering to the ED. We are a way into this journey and those behaviours are VERY hard to fix. In hindsight I would jump on them sooner and hard, but with professional help

We don't have specialist care here and I feel my Son needs it desperately. FBT is still the main treatment of choice, but we are looking into others at the moment to combat the behaviours.

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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  #59 
Quote:
Originally Posted by galanick
Are you getting much help from Ed team. Have they checked for sensory issues
 

We don't have an ED team yet -- I am still waiting for our initial appointment.   I assume my son has sensory issues; he always has but it always has been just related to food.   He's never been bothered by scratchy tags in his shirts or fussed about his socks etc.
Honey_Badger

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Reply with quote  #60 
Quote:
Originally Posted by PuddleduckNZ
honey badger.

Some of the things you say could come from my mouth.

My Son was/is the same, he was NEVER a picky eater as a younger child, and would eat most everything.
 

So, that's actually a difference.   My son has always been a picky eater, from early childhood on.   I think he was able to get enough calories in to support growth, though, back when he was eating meat.  He was picky about which meats but he did eat them. 

Quote:
It just came upon him like a wave, he dropped things and became over the top about what he did eat and how it was prepared. If he thinks something is too soggy, salty, crunchy, undercooked, overcooked or just the 'anti' switch is flicked, there is no going back.


Wow -- do you have any idea or theory at all what could have caused that "wave"?   Did it all of a sudden just happen one day, or was it a gradual thing over the course of a week or month?

Yes -- the "anti" switch -- that's the same.   Once he decides he's not going to like it, that's it -- won't try a different side of the same piece or a different bite.  Hard to convince him to try a new food again the second time if he didn't like it the first time.

Quote:
Then came the swallowing problems and it all compounded together. Its all disordered.


My son does not have the swallowing problem.  I can only imagine how hard that is.   

Quote:
'asparagus, green beans, avocados, green peas, seaweed' This could be my Son, he loves these foods!


That is one reason why I am posting in so much detail.  I am finding that there are similarities among what severe picky eaters are able to eat.  I am trying to understand it, too.

Quote:
Catering to this is catering to the ED. We are a way into this journey and those behaviours are VERY hard to fix. In hindsight I would jump on them sooner and hard, but with professional help

We don't have specialist care here and I feel my Son needs it desperately. FBT is still the main treatment of choice, but we are looking into others at the moment to combat the behaviours.


I am wondering if there is evidence based treatment for selective eating disorder that results in not getting enough calories -- i.e. ARFID.   As I've said before my son hasn't been formally diagnosed but I honestly believe that's what he has.   But even if he gets a diagnosis -- so what?    

I completely believe Family Based Treatment is the gold standard treatment for restrictive anorexia, but from what I have been reading, there isn't yet any good treatment out there for Selective Eating.  There are different techniques people are trying but there aren't a lot of studies out here pointing to one or the other that are the best way to go.  As far as I know.  I am hoping the specialists will have some evidence based treatment ideas for me, but honestly I'm not holding my breath.   I just don't think the research is out there. Yet. 

Honey_Badger

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Reply with quote  #61 
OMG OMG I am so happy tonight!   We have had a really rocky week.   Ups and downs.   

But tonight my son sat at the table for dinner and ate a full serving of salmon!  A full kid sized serving, taking bites that were regular normal bites for a kid, big mouthfuls of salmon (and capers and lemon... lots of capers and lemon).   Not little toddler bites.  

And he was happy!   When he has a full day of calories and fat and eats a good dinner, I can tell because he comes and sits in my lap for a snuggle after dinner.   It's the oddest thing because generally he is super cranky and irritible.   But I have noticed that when he gets a lot of calories and nutrition he can be really sweet and affectionate.
trusttheprocessUSA

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Reply with quote  #62 
How wonderful - it makes me tear up to imagine your young son sitting in your lap. That's your boy so glad you got to see him 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.
Honey_Badger

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Reply with quote  #63 
My son weighs 78 pounds tonight!
PuddleduckNZ

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Reply with quote  #64 
Excellent, keep going! [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  #65 
Thank you so much Puddleduck!   It has been really really tough this month (though nothing like what I know you guys are going through.)   I feel like I have almost literally been pouring the calories into him.   I'm practically digesting them for him.   This isn't "normal" eating but at least we are headed in the right direction.  

My son was so proud of himself when he weighed himself this evening.  He even went back in and took off his sweatshirt because I told him he'd need to take off a pound for how heavy it was.   He said "Aren't you proud of me?" in almost a little boy voice.  And we sat and watched TV before bed for an hour -- with him letting his little sister sit in his lap!!   OMGoodness.

This weight gain has been 75% achieved through chocolate milk and chocolate milk shakes.   I shudder to think what will happen if (when) he sours on them, but for now they seem to be accomplishing the immediate objective.
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Reply with quote  #66 
Quote:
Originally Posted by Honey_Badger
snip
My son was so proud of himself when he weighed himself this evening.  He even went back in and took off his sweatshirt because I told him he'd need to take off a pound for how heavy it was.   He said "Aren't you proud of me?" in almost a little boy voice.  And we sat and watched TV before bed for an hour -- with him letting his little sister sit in his lap!!   OMGoodness.
snip


Woohoo!! Way to go, Honey_Badger

I'm fascinated by the paragraph above (from your post).  I cannot imagine a kid with AN saying that ... so interesting to see similarities and yet all the differences.

Keep up the good work - you're doing a great job!

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PuddleduckNZ

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Reply with quote  #67 
My experience of a son with dx ARFID is like this.

My son gets very upset if he doesn't gain, so much so we are considering blind weighing for the opposite reason. He removes his shoes and jumpers as he knows they will make it inaccurate.

Its spikes his anxiety to think he is 'not getting better'.

This doesn't make eating any easier but the desire to be better and want to eat normally is very strong.

Very interesting, though I wish I knew nothing about it!

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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  #68 
Puddleduck, I could see that happening very easily with my son in the future.  He wants to make me happy, he knows I am worried about his weight, he WANTS to gain weight.   He WANTS to grow, and he wants to eat "normal people" food and be like everyone else, although he also gets defensive about that -- he just wants to be accepted for who he is (who wouldn't?) and who he is, is a kid who doesn't like a lot of food, and likes what he likes JUST SO.   So if he doesn't gain weight, I could see him getting very upset and anxious about it.   I will watch out for that possibility.
Torie

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Reply with quote  #69 
Quote:
Originally Posted by PuddleduckNZ
snip
Very interesting, though I wish I knew nothing about it!


That captures my sentiments exactly.

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Honey_Badger

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Reply with quote  #70 
I made a big mistake last night for dinner.

I got too invested in what my son was eating.  I want so so much for him to just eat big bites of normal "people" food.   Also I was tired, and I didn't feel like getting him a special meal.

I saw some beautiful looking fresh made sausage ravioli at the store a few days ago and picked them up.  Now, I know my son doesn't like ravioli much, not even the cheese only kind.   He will just nibble the noodles around the cheese filling on a good day and complain that he doesn't like his noodle to be gunked up with some stupid filling.

But I was excited about his weight gain, I guess, and he has had more of an appetite lately.   So I decided to serve the ravioli for dinner last night.   I heated up his special, favorite spicy tomato sauce.  Then for my husband and I, fresh made walnut/parsley pesto.

I put the sauces out on the table with individual spoons, each one equal for anyone to have.  That's a strategy I have learned from a severe picky eater online blog somewhere -- instead of pressuring the picky eater, just serve the food buffet style and let them pick what they want.   It's a GOOD strategy for my son.   I had him carry the food to the table, and he even tasted the pesto.  (Told me it was bad and needed salt but whatever.)  

Now my first mistake was letting him get too hungry.  He came home from school hungry, and I made him wait for dad to come home.   He started to make himself some popcorn and I asked him to please wait because I wanted him to be hungry for dinner.  He exploded and yelled at me that I wanted him to eat more, and he was hungry now, so why wasn't I letting him eat???   I got mad back at him; calmed down, and stated calmly that I did want him to eat if he was hungry, but really wanted him to have some appetite for dinner, and popcorn was going to fill him up.   He chose to eat a few peanut butter pretzels instead and I don't know how many.   But as a result he was pretty hungry when dinner rolled around.

But then I put four ravioli on his plate, and didn't let him serve them to himself.   He seemed really happy about dinner, and had a good attitude about the meal.   But then, as he was putting a ravioli into his mouth, I made some comment "MMM, this pesto tastes fine with the sausage."

"Sausage???"   He spit out the ravioli.  "In mine too?"  That was it.  His "switch" went off.   The food went from "attractive" to "disgusting" in his mind.   He started to cry.  He was really hungry, and I had provided food for him that he couldn't eat. 

I tried to reason with him.  I told him that these were really delicious ravioli, they were expensive and handmade.   They had his very favorite sauce on them.  They had sausage in them.  He EATS sausage now.   He has between 3 and 6 links of sausage for breakfast many days.  He ASKS for sausage.   Pork sausage.   So could he please just take a bite?

He poked around, nibbled a bit, and then moaned, "The sausage is GRAY! That's so disgusting" and got up in frustration and went to the kitchen.  (Just for the record it was NOT gray.   It was the color of pork sausage with no added dyes, mixes with delicious ricotta, romano and parmesan cheeses!)     I asked what he was doing and he said "Getting some food I can eat."  He made himself a bag of microwave popcorn instead of eating dinner, and had a chocolate milk shake.  Late that evening as we watched TV, he asked me to make him a hot chocolate as well.

This experience was very frustrating to me because I should have realized I was pushing him too fast with these ravioli.   I just want so bad for him to be eating normal, regular bites of "people" food.   I realize that over the past 4 weeks, I have created a scenario where he comes to meals and expects that there will be food he likes.   He is trusting me about meals so much more lately.   For the past several years, I have just given up trying to feed him foods he like (because there's so little he likes, it is so frustrating to me as a person who adores food and cooking!)   So he came to meals with a very defeatist attitude -- "I assume there will be nothing here worth eating.  I'll get myself a bowl of cereal".  His attitude was very much like what I saw again, last night.

That's all changed recently, and he's been putting on some weight.  And he's been coming to dinner with a more positive attitude.   He was happy enough about the ravioli at first, expecting it was just the cheese kind.  I think if I had just stuck with cheese, he might well have eaten all four, and asked for seconds.   I was so intent on pushing him to eat the meat kind.  I want him desperately to eat more meat.   But I realize now if I am going to introduce that kind of food, I need to do it buffet style.   Put the ravioli that is challenging in one bowl on the table, but have some other options he sees are "real food" too -- so he can have a choice.

I know I just typed a book here.   It probably seems like I am making a big deal out of nothing.   Compared with the anger I know a lot of parents have to deal with when refeeding their AN children, this might seems like no big deal.   But his anguish was really intense.   "Why aren't you feeding me proper food??  That I can eat?"  

It really hurts the Italian mama in me to be accused of not properly feeding my child!
Torie

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Reply with quote  #71 
Aw, Honey_Badger, it really sucks that all of us here have to deal with such stupid battles.  When we signed up for parenthood, who knew what kind of bogeymen lurked in our futures?

Anyway, as the (ATDT) saying goes, it's feedback, not failure.

Please don't beat yourself up; you've had so many victories lately.

Hang in there!

Hugs

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PuddleduckNZ

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Reply with quote  #72 
This is definitely feedback not failure.

I sympathise, this kind of behaviour is not unusual at all in our house. Except my Son wont go and have something else either without a fight.

Its hard to work it all out, really hard x

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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.
galanick

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Reply with quote  #73 
I completely understand. Had stand off over giving d an apple instead of Apple sauce. You are going so well, you really are. I think some days it's about luck. Your right that multiple factors may have contributed to not being successful. But he has gained a lot of foods and is gaining.
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teenboymomma

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Reply with quote  #74 
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.  Should we have  to send our son to a facility, he recommended http://veritascollaborative.com/ in Chappell Hill, NC as it only deals with adolescents.  He said they have everything and can even continue your child's school work.  Good to have in our back pocket but praying we won't need it.  There are some great books you should read that provide so much information about this disease - The Boy Who Wouldn't Eat Apples and Brave Girl Eating.   In terms of appetite, my son used to consume an entire large pizza alone and since he has lost so much weight, he says he isn't hungry anymore.  In Brave Girl Eating, the girl doesn't actually feel hungry for a full year and is very happy to finally feel it again.  I think their bodies get used to them either ignoring it or enjoying the feeling that they no longer feel hunger like non ill people do.  We just started making him eat 3500 calories a day in 5X700 calorie meals every 3 hours or so.  It's very difficult and also for him.  We are all praying a lot and I for one am keeping my faith in God that he will be with us through this.  My son believes God can overcome also but he is struggling.  There are so many brave parents on this site with such great info.  I ordered the benecalorie today that another Mom recommended - it's 350 calories in a small serving so that might help.  Keep us all posted. 
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Honey_Badger

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Reply with quote  #75 
Quote:
Originally Posted by Torie
Aw, Honey_Badger, it really sucks that all of us here have to deal with such stupid battles.  When we signed up for parenthood, who knew what kind of bogeymen lurked in our futures?

Anyway, as the (ATDT) saying goes, it's feedback, not failure.

Please don't beat yourself up; you've had so many victories lately.

Hang in there!

Hugs


Thanks so much.  I definitely don't feel like we've had victories lately.   I only post about the good stuff right now.   But basically most of the foods he added recently he's dropped again.  No longer eating macademia nuts, just nibbling the chocolate chip muffin, just nibbles the chick fil a chicken sandwich.   

Mostly now he's living on chocolate milk shakes (from a bottle, not homemade) and Chick Fil A Waffle fries.  
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