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atdt31_US Show full post »
mtkmbc4
Chia seeds, pumpkin seeds and sunflower seeds get used a lot here. I also try to put these on every conceivable food as a “garnish.” 
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Elibean1
Thanks so much, good tip!  Seeds are fine, she bakes bread sometimes too so could put in bread. 

She has had a hazelnut/peanut allergy. Almonds in small quantities seem ok. 

I made a banana, oats, yoghurt, milk, strawberry smoothie this morning that went down well but 300mls is pretty much her limit in volume terms...maybe I need to work on that. 
Elibean
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atdt31_US
Just throwing this out there for discussion if people want to ... not trying to sway anyone and in fact I revisit my own position on it frequently .... 

I bought benecalorie (two cases at two different times) and tried it in two or three things.  It was a big fail, but probably because I did not start small -- I added a whole tub but I don't even recall into what ... I do recall it changing the look and texture of it and I did not serve it. Found out later my tubs were maybe stored in too cold a place bc my stuff was sort of semi-solid and since then I have heard it should be more like oil.  Anyway, it was not a success for us so I abandoned it in favor of canola oil.  
 
That was during our first "refeeding/LSUYE" attempt in 2015 (only lasted 6 weeks or so).  When we revisited trying to force more weight gain, one year ago, I had read much more on this forum but also tons and tons and tons of journals and books and I was not as frantic, etc.  I had come to realize that I was in a marathon and not a sprint and that my race was not returning as quickly as possible to normal eating but rather, finding a way to achieve, for the first time ever, normal eating in volumes that would sustain required growth and ultimately maintenance of that growth.  

So .... I have taken the approach that benecalorie type additions in normal table food are not going to help me with my longterm goal of teaching her to eat real food in volumes and at times to sustain proper health.  I am inconsistent, I suppose, because I do fill her full of peanut butter an Nutella, for instance, to up her fat and calories.  I also do add oil and double butter in certain recipes like rice dishes or Mac and cheese.  But, unlike my 2015 refeeding attempt, I no longer add oil to things like applesauce or yogurt or her dish of soup or spaghetti.  

For our situation, I think she needs to see what portion sizes should look like, so I need 250 calories of spaghetti to look like it will at other people's houses, or like she'd make it when boiling noodles and opening a jar of sauce.  So I have decided to rely on the artificial calories of things like first-morning ice cream shakes and monitored snacks at the nurse, etc as the calories that have accelerated her weight gain to an acceptable level and now I am shifting focus from rapid gain to teaching her to sustain it (I know she needs to continue to gain, just at a slower rate than was forced the last year).  

No idea if any doctors agree with this, in an ARFID/volume kid, but it is what makes sense in our house at this juncture.  Of course, I should disclose that in the last two months, which is when I slowed the rate of gain (by titrating down the shakes), she has made zero progress in spontaneously plating or getting meals that would sustain her weight ... so I fear I am not very far into this marathon even though we are in the best spot we have ever been in.
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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atdt31_US
Elibean1 wrote:
She currently has whole milk, ice cream and chocolate powder shake for breakfast (300 Cals) and as breakfast seems to set her up to eat better for the rest of the day I’m wondering how to increase cals as she grows. She just can’t do solids first thing - weekends are easier. 

 


I wonder if you could blend in 1 or 2 tablespoons of rapeseed/canola oil -- each tablespoon is 120 calories so that could be a way to bump up that morning shake without a noticeable change to footprint.  It would not likely change the texture or taste much ...
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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Enn
Elibean,
 For your smoothies, if you use the premium ice creams (Haagen Dasz, or Ben and Jerry's) they have a lot of calories:
1/2 cup is 270 cal.
(Just not sure if most are nut free).
XXX
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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mtkmbc4
I also have mixed feelings about using the extra oils and Benecalorie, but decided that my first priority was getting the weight on her and later I’d address the volume issue. In fact, I think I probably am addressing both issues because I am now serving much larger portions of food than before. There is only so much concentrating of calories that can be done and to get enough into my d, it takes volume also.

Adding that the Benecalorie tubs do need to be shaken very well and sometimes the solid (I presume protein) portion needs to be spooned out rather than poured out. Usually though, a vigorous shaking does the trick to mix it before opening.
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atdt31_US
The volume thing is so frustrating.  Sometimes it is clear to me that she has stopped sooner than I think is necessary --- for example we were at a craft place painting the other day, she said hungry, and asked if she could walk across the parking lot to get fries and an ice-cream dessert from a fast food place.  I said sure, gave her money, and off she went.  She came back with fries and a chocolate ice cream blizzard-type thing with peanut butter ribboned through it.  She ate about 5 fries and then the dessert in its entirety.  Now, that was plenty of calories for that snack ... but, what kid stops after 5 fries.  What human stops after 5 fries.  I asked her later, so as not to make her feel bad at that time, why she stopped.  She shrugged and said she wanted the ice cream.  I asked if she could not have eaten both the fries and the ice cream and she said she did not want to get too full on fries and miss out on the ice cream.  All sounds legit. BUT ... put her friends in that situation and every one of them would eat all of both the fries and the ice cream. 

Other days I feel like she is not so far off the norm ... we ate lunch yesterday with her twin and two other 13 year olds who happen to be incredibly mature for their age -- they could seriously pass for 17 or older.  They are tall, muscular, athletic.  They are bold in every way.  We all went to a pizza place where you build your own so everyone ends up with their own pizza -- all four kids ordered toppings of their choosing, all four kids sat down with the same sized pizza, and all four kids ate within a slice of finishing the pizza. All four kids then went up and got dessert and all four kids ate it.  The pizza was super thin and although this was fine for a meal, it was by no means a ton of food ... yet it was enough for all the other kids too.  

Similarly, in years past when my d just did not gain enough, I'd listen as other moms discussed their dinner or food situation in their houses and I swear to hear them talk my kid ate more than theirs.  

So sometimes I marvel not at why my kid remains so thin, but how those other kids got so big.  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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mtkmbc4
That is the maddening thing for our kids, too. They see that their friends probably do eat less at times than they do, yet are growing just fine. Different bodies, different needs has to be the mantra.
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Elibean1
I tend to agree about teaching portion size and not hiding extra calories in - especially as they get older and more independent. 

That said, when she had a dip at the start of secondary school we needed to get calories in faster. I’m sure that’s not the last time, as adolescence throws so many stressors their way...plus with her body image stuff...I like the idea of having hefty recipes up my sleeve!  Or after illness, too.

And adding a little oil is a good idea, I’ll try. We already use premium ice cream so that’s good!

Volume is a challenge, for sure. 


Elibean
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mtkmbc4
Well, our (my) attempt at Magic Plate is coming to a screeching halt. I was the only one who thought we had to change approaches. H is wanting to go back to her choosing her own foods with our supervision and advice. He wants to reinstate weekly weigh ins, so I said she needs to gain 0.5 kg per week to earn certain privileges. He’s calling the pediatrician today to discuss. I don’t see how trying a failed plan is going to result in success. D has not been eating all the food I prepared the last few days (guessing 2500 calories yesterday.) Although that isn’t enough for her to gain weight, I’m wagering it’s still more than what she’ll take in when we allow her to choose her own breakfast and lunch. We just keep
going in circles...
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atdt31_US
mtkmbc4 wrote:
Well, our (my) attempt at Magic Plate is coming to a screeching halt. I was the only one who thought we had to change approaches. H is wanting to go back to her choosing her own foods with our supervision and advice. He wants to reinstate weekly weigh ins, so I said she needs to gain 0.5 kg per week to earn certain privileges. He’s calling the pediatrician today to discuss. I don’t see how trying a failed plan is going to result in success. D has not been eating all the food I prepared the last few days (guessing 2500 calories yesterday.) Although that isn’t enough for her to gain weight, I’m wagering it’s still more than what she’ll take in when we allow her to choose her own breakfast and lunch. We just keep
going in circles...


Hi mtkmbc4 -- wondering how it is going.  Sorry for such a frustrating time.  Our house has such ups and downs in terms of whether the parents are on the same page.  It is too exhausting to have that battle along with normal daily duties and all the stuff that goes with supervising meals for an ED kid.  What is her current weight and is she plateaued or losing (you say not gaining).  I think weekly weight checks for an ARFID kid who is not medically unstable seems like a lot - I have feared making weight too important, but I do understand needing to know what is happening and sometimes seeing that weight is the only way to know. Once my d got out of danger zones, I trusted watching state and weighing much less frequently, but there were sure periods where my own comfort level was enhanced by seeing zero loss on a scale. 

Sorry, no real advice here, just support and understanding.  This marathon seems like more than a mere 26 miles some days!
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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mtkmbc4
Over the past 8 months her weight has fluctuated between 49.3 kg and a high (briefly) of 52 kg, generally staying between 50-51 kg. This puts her BMI % at 35-40% I believe last time I plugged in into the CDC BMI calculator. Historically she was 60% BMI, and she has had only about 3 periods since menarche Aug 2017! For those reasons, I know she is still underweight. She has also grown less than inch taller since August 2017.

While my d was quite pleasant and interactive yesterday, which is a nice change after the past week of being very angry at us and battling over finishing meals, I know the peace may be short lived if we are instructed to take over her meal prep again.

During hell week (the week of Magic Plate/LSUYE), she put in 0.8 kg and that was even though she didn’t always finish everything I plated despite loss of every privilege. (Phone service and WiFi could always be earned back after each successful breakfast or lunch) So, I know how to get weight on her. In less than 5 weeks, I know I could get her to the target weight I have in mind for her, IF she would cooperate.

She sees her dr next week. If her weight goes back down, doctor will likely tell her she must be more cooperative and accept direction in food choices. Her vitals yesterday were very normal.

Thanks for asking.
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atdt31_US
WARNING --  this is long and rambles and I don't have time or energy to proof it well and I wasn't real sure what thread to put it in.  It felt good to type it in. Might not be worth the read, however.  

So ... I continue in my frustration.  As time has marched on, the ED docs and researchers have tried to start to compile data to try to show what works for ARFID, what doesn't, etc.  I so see that Dr. Lock has identified three sort of subtypes of ARFID:  1.  Lack of Interest in Food - usually a long standing pattern of low appetite, interest, pleasure, or taking the time to eat; 2.  Sensory Sensitivities - sensitive to food taste, smell, feel, texture, color, etc.  Usually long standing “picky eating” with aversion to novel foods, usually consuming limited variety of foods; 3.  Fear of Adverse Consequences - usually shorter duration after a specific event related to eating, choking, allergic reaction or swallowing leading to avoidance and extreme fear of eating.

Identifying them is great, but as discussed in this thread above, it would be great if they could separate them out instead of lumping them under one name.  Makes searching for answers so so difficult.

My kid is the Lack of Interest ARFID ... she gets hungry.  She feels it.  She does not run from it at all ... she seeks out food she likes, which is a wide variety of things (not like a super adventurous adult for sure, but all textures, all temperatures, all food groups, not super rigid from what I hear of other kids her age) ... and, after a little bit of the food goes in, she is no longer hungry.  So she stops.  And she will eat some more if prompted but at a certain point she is just done.  I assume it is, to her, like if you just ate the biggest Thanksgiving meal you ever had, and then someone said "that is not enough, please eat that same amount again, right now."  You would not want to.  Not because you don't want to gain weight. Not because you are afraid of food.  But because it would be beyond uncomfortable and you would derive no pleasure from it and would in fact dislike the experience very much.  Also, be sure that every single meal you eat, you then double.  Always.  Every meal.  Every day. 

That has been her life, from about four weeks of age.  She would happily eat a portion of the bottle then quit.  If reinserted, she'd push the nipple back out.  If reinserted, she'd shake her head to move away from it.  If reinserted, she'd make a gagging sound and look at you with warning, steely eyes.  If reinserted, she'd effortlessly fountain out the formula that had been happily ingested minutes before.  Then she'd be relaxed and happy again.  We were told to fortify her formula with safflower oil to increase the caloric value of each ounce ingested .. we have essentially been refeeding this child since four weeks of age. 

I am not sure there is an answer to this ... but what is a realistic goal for her?  I believe it will be a "win" if we teach her to eat on a clock, and to have a calorie minimum in mind for each offering/day so that when she is matured enough, she can work within that framework and will not backslide to dangerous vitals.  Sort of like a diabetic kid eventually has to learn how to know what sugar content he is eating and how to manage that part of his life ... it is not natural, but it is necessary.  

 In this way, I think Lack of Interest ARFID seems very different than most of the other eating disorders, and maybe even from the other two ARFID categories.  I do not believe refeeding will be a finite period of time where we can stop life until she gains, with the aim that at a certain level of good nutrition she will be able to take over the reins again. I guess the "re" part of "re-feeding" is a misnomer ... these kids do not have a normal to return to.  

I struggle with this because it is hard to know how hard to push the nutrition on a daily basis.  If she were RAN, I think I would wholly believe that pulling her from school and feeding against her (ED's) will would eventually work ... and in theory she would return to school and friends and life and eat in a natural fashion to sustain and thrive (even if she has to watch out for certain pitfalls forever). 

Pulling the plug on childhood for a time, even a few years if necessary, it seems to me, is a fair trade for a lifetime of normal eating to look forward to.  If I had done that when we first identified she was Lack of Interest ARFID (even though it did not have a name, it was identified very early on that she did not have normal eating instincts and that she was suffering for it medically), she would have never had any semblance of a normal childhood.  As it is, she missed out on a lot.  One by one, sports, piano, acting in a children's theater, all got knocked out because she could not do it AND also get in the necessary calories to survive ... meals took 1.5 to 2 hours.  That does not fit with most extracurriculars or shuttling from place to place.  

But I think there is zero evidence that, had we gotten a G-Tube and fed her to a higher bmi that way (as was suggested at one time when she was about 7 but then quickly abandoned by the doctors) that she would have had a revelation or brain change or whatever so as to have a normal appetite and normal instinct to eat once she was no longer acutely hungry.  Think about it .... you get hungry.  You get food.  It looks great.  You eagerly begin to eat your full plate of food you are excited about.  I bet if you stop and notice, you are no longer "hungry" after the first three bites or so.  But no part of you at that point is signaled to stop eating.  You eat until the food is gone and you know it to have been a normal serving, or you eat until you feel full (which, I believe, is different than "not feeling hungry").  She stops when she is no longer hungry.  

I don't know what I am trying to say with all of this, but we are back in the trenches and it is super frustrating because, although I know when her vitals are crap, as they are now, we need to find ways to get more food and water in (I know, water has no calories) ... but it is just so hard and there is literally no end in sight to this approach.  

On another note, my particular Lack of Interest ARFID kid is also blessed with a type of Autoimmune Encephalitis ... either PANS or PANDAS.  She has likely had mini flares since before the age of one or two (per our specialist) but finally had one that forced us to look further and last spring we finally figured it out. The oddity during that flare was the she started eating a ton more than her normal ... she noticed it, we talked about it, we shrugged and thought this is great!  She in no way resisted those obvious out of the norm cues to eat.  And we figured out that time and antibiotics and rest helped her flare symptoms (tics; loss of speech/debilitating stutter; constant fight or flight panic mode; separation anxiety like a toddler or more; etc, etc, etc).  Those symptoms waned and by June she was at least 75% to baseline I would guess (now, without looking back at notes).  But the better eating, although it slowed, stayed around.  We had shorter meals.  We had fewer prompts.  She maintained her weight without the daily shakes she had needed in order to gain ... but not losing seemed like a win at stage given what she and we had been through. Then the eating better slowly, ever so imperceptibly slowly, started to wane.  And I had to face it the honeymoon was over and we were back to where we had been before the flare.  So I got in touch with one of the few doctors I know that is pretty involved in both the ED and PANDAS world and she entertained a phone call and it was her thought that the good eating during flare was actually a symptom of the flare … binging!  Although eating restriction is more often associated with a flare, it can also present with binging.  Which in my Lack of Interest ARFID kid looked like normal eating.  That is gone with the rest of the flare (thank goodness for that at least) but we are left with the same Lack of Interest ARFID kid we started with.  

So now, six months after the worst of the flare symptoms abated, she is the same weight she was in May 2019 (she stagnated, did not gain and then lose) but over two inches taller.  Her bmi is still 15-16 which is still way better than the 12-13 she was for the first 12.5 years of her life.  
 
Recently, she has been more and more fatigued in a very “different” way than a normal teen who stays up too late and needs to recuperate after a school week.  She has been hard to rouse … yesterday she was completely unresponsive when I tried to wake her at normal time for school.  Zero response … slack arms when I picked them up; I put a cold pack on her bare back, on her cheek, on her wrist; I shook and rocked and loudly spoke; I even sang, which would normally prompt a very quick pillow over the ears).  That went on for over half an hour with zero response.  I took her pulse to see if there was one. That was at 6:45 I started that, and the initial wake up attempts lasted until 7:20 or so when I threw in the towel she would not be going to school on time.  I went up every twenty minutes or so thereafter to see if the serial approach would gradually rouse her.  No luck.  So I let her rest and called and made an appointment with the pediatrician to be sure no neurological (PANS) or if they could explain it.  Woke her up at 10:00 and she was still hard to rouse but did get up and we got out the door by 10:20.  Got to the doctor and at my request they did orthostatic, urine, and weight.  The examined her and said throat “too” red and wanted to test strep but did not bc she is on long term prophylactic antibiotic so it would have been negative no matter what. Urine did not show dehydration, which I was surprised at given she had slept over 12 hours and clearly not drunk anything in that time.   Her orthostatic numbers were not wonderful:
 
Laying (only one minute, and with head elevated):  102/54 P87
Sitting (one minute):  98/46 P98
Standing (one minute):  88/42 P113
 
They sent us to the hospital to get a viral panel nose swab and the flu and all 20 viruses came back as negative.  So they said she did seem ill, assumed it was a virus not tested for, said needs to drink more fluid, and to check back next week for a follow up.  
 
I will of course follow up, but we are traveling for the holiday (by car) so it will be the following week in all likelihood.  When I follow up I will take the journals I have known about for a few years that show in ED patients a low diastolic coupled with tachycardia can portend heart failure.  I do not know if ped knows that.  We have had two EKGs and both were fine, and one was with similar orthostatic values and presumably the EKG giver and reader was tuned in to whether the diastolic hypotension and tachycardia were major concerns, but rather than assume like I did last time, I will overtly provide the articles and be sure they are comfortable.  In the meantime, I kept her out of PE today and now we are on Christmas break so she will be quite sedentary, which is her natural inclination.  
 
Yes, we will need to find some way to restart weight gain.  Yes, she hates the idea of going back to shakes.  Yes, I believe her they make her stomach hurt.  Yes, I will not do LSUYE because I think I would do that until she is 75 and I am on my deathbed.  I think she will never eat right on her own unless and until she matures and takes over feeding as a scheduled event and when she can see that her life can be normal and spontaneous and full if she feeds her body, and will be isolating and filled with doctor visits and inpatient admissions if she does not eat on the schedule.  I hope I am wrong … but in the event I am right, I wish there was a better playbook for how/when to start to train her in that way —— everything I think I would do in that regard is 100% contrary to the warnings on here (which I very much support on a normal kid and on my other daughter) in terms of not talking calories, not reading labels, etc.  
 
Anyway, feels good to put all this out there.  Been swirling around in my head for a bit and not a soul that I know in person could care less about any of it.  So, even though I don’t really fit the EDs most discusses on this board, I am glad to be among the ED-literate.  And even though we don’t fit exactly, this place is amazing if you do what you all suggest … read a bunch, take what applies and leave the rest.  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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Scaredmom2019
This thread is interesting to me. Im about 100% positive that my 17 year old D had ARFID since elementary school. In middle school she feared having a bowel movement in school or away from.home. I mean she was obsessed with this fear. All through middle school she didnt eat all day until home to avoid having to use the bathroom. This went on for years and we even saw a few doctors and no one ever mentioned an ED. Wish they had because maybe we would've had a different outcome. This went on for years but she would eat once safely home and so never had weightloss. Then at 17 she found that it was too stressful to have friends and such because they always wanted to eat. 
She gave up on eating and as aide benefit she liked the huge weight loss on her body....morphed into an RAN presentation.
Now she still feels totally nauseous and sick when she eats. I do not believe it is due to body image issues. She tells me she isnt worried about that. Its the pain and fear of stomach issues that we now struggle with. 

I think we will also need to have a long term maintenance plan for her to stay at a safe weight. She has always been very very lean and thin. I think her RAN treatment is missing the boat with her. She is afraid to eat due to physical reactions. She tries hard! If im out and about ahe will text me " do I need to eat a snack now" and then will do so even though it makes her feel very sick. So hard.
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atdt31_US
 She is afraid to eat due to physical reactions. She tries hard! If im out and about ahe will text me " do I need to eat a snack now" and then will do so even though it makes her feel very sick. So hard.


I do not claim to know if your d is ARFID or RAN or something else.  But, I do know that the unknown is difficult territory.  When you don't know, it is hard to make sense of a lot of the advice on here and elsewhere for "EDs."  Advice is frequently offered by rushed caregivers who jot down the important point to help a poster - and it can seem as though their advice and experience should apply to EDs across the board.

If I read your above statement and my frame of reference was RAN, I might very well share with you that asking if she needs to eat a snack is really her trying to find a way to tell ED that you MADE her eat and that she did not choose to and therefore ED would take it easier on her for having eaten that snack; and then she feels bad afterward because she feels guilty for having eaten and not fighting you more.  I totally believe that is appropriate analysis in many kids ... the anecdotal evidence on this board relating to that sort of pattern from a RAN kid is overwhelming.  And when that is what is going on in that kid's head (whether they themselves even realize it) the kindest thing the parent can do is DEMAND that the snack be eaten so the kid can hide behind that demand and eat in a somewhat less tortured way.  BUT ... if the question does not come from that place, but from a non-RAN sort of ED, I think even the medical pros are not sure what the right answer is. It appears there are different strategies for different ARFIDs and what works for RAN in some respects can be contraindicated in a particular ARFID kid.  And I do know that not all RAN kids are the same and can present in their own unique ways -- but I get the impression through reading here and other places that strictly applying some of the RAN-based approaches to some sorts of ARFID kids can actually make things worse.  That has not been my experience, but I there are many instance in the ARFID category of more the fear or picky realms where parents go back to a LSUYE or "escape extinction" approach being quite detrimental ... especially because a lot of those kids present at very young ages.    
 
Again, no answers, just agreeing that this ED-world is hard and that the uncertainty of some of it is overwhelming, and truly exhausting to know that even the good ED professionals are still largely making it up as they go along on ARFID.  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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ValentinaGermania
"Recently, she has been more and more fatigued in a very “different” way than a normal teen who stays up too late and needs to recuperate after a school week.  She has been hard to rouse … yesterday she was completely unresponsive when I tried to wake her at normal time for school."

We had that also during refeeding and I think it is partly due to the long lasting malnutrition. My d went to bed at 9 p.m. every day at age 17/18. She needed at least 9 hours sleep, better more. She also went to a nap after coming home for school and having lunch if possible for about a year.

Now she is back to normal teenage sleeping times 🙂 but only 2 years after WR.
Keep feeding. There is light at the end of the tunnel.
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Scaredmom2019
It is very hard to decipher what type of ED. Im relaxing A BIT now. I cant see the point in making her eat until she vomits...that is going to set us up to go backwards which I wont go there!
She is WR and biggest she has ever been at 17. I think if she gains a couple more pounds it will be great but the race to do so is over. 
I'm no longer hiding fats. Im serving less huge meals and letting her eat more naturally but more often. So same food but in smaller portions. It scares me BUT I really don't see the RAN anymore as long as I'm still supervising. She went from a 0 to 6 in pants and honestly doesnt seem too bothered by it which gives me hope that we can continue on.

I had bought her a couple size 2 lululemon leggings a couple months ago. She wore one pair last night and she said it cut off her circulation🙂

So I just bought her three new size 6 lululemon leggings for Christmas. She is still wearing crop tops and leggings and I have never heard her say she feels fat. Bloated? Yes. But she does not seem to be hiding or changing her style with the weight gain which makes me soooo happy. 

I am now pushing back on the ARFID issues with pooping and feeling that she will get sick from eating. We just went out to lunch where she asked for chips and salsa to start with. Then she had two eggs, serving of breakfast potatoes and a large chicken wing. And although I would've liked her to eat more - I decided to honor her when she said im full rather than make her eat more and risk the full feeling leading to involuntary vomiting. Smaller portions with more frequency is my plan.
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atdt31_US
Coincidentally I sent my husband to LuLuLemon today to get a pair of six for our other daughter (arfid’s twin). She saw what he was doing and is mad bc she wants a four ... I have no idea how differently the four and six will fit but I thought at that price I’d like them to last more than a few months .. so now I have to watch that kid to see why so upset about the bigger size. (I am Hoping they really are that much bigger than the fours and that I dont need to worry about feeding issues with the twin(been on guard for about nine months but I think normal for her age ... just being vigilant in case). Do you know, if the fours fit, would the sixes hang (align style). 
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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atdt31_US
It is very hard to decipher what type of ED. Im relaxing A BIT now. I cant see the point in making her eat until she vomits...that is going to set us up to go backwards which I wont go there!
She is WR and biggest she has ever been at 17. I think if she gains a couple more pounds it will be great but the race to do so is over. 
I'm no longer hiding fats. Im serving less huge meals and letting her eat more naturally but more often.


Seems like you know what to look for and hopefully if there is any backslide you catch it quick. Sounds like you are doing great!  Has she continued daily Miralax?  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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Scaredmom2019
I didn't know what size lulu to get my D either. The size 2 was now cutting off circulation she told me. I told her I thought size 4 would be fine but she suggested maybe a 6 - so I went for it. We can always exchange for a 4 but at this cost I also want them.to fit a while!! They are ALL tight so I am not thinking there is a significant difference from 4-6. I figured better risk being to big than too small 🙂 when I got her the size 2 (in midst of ED) she actually thought she should have a 0... SO the fact that she can say maybe a 6 is music to my ears. 
She thought Miralax gave her more diarrhea but the NP at ED program suggested we keep trying it. We have a GI emptying study on Thursday of this week so I'm thinking we'll just see what comes of that. The GI doctor has been really good. I was nervous the doc might trigger stuff but she seemed totally at ease when I stated right away that D has an ED. I was really impressed. Also at that appt, when we first walked back with the RN, they wanted to weigh her. I simply said "oh weight isn't necessary". It felt really empowering for both of us🙂 
After all she is being weighted 2x a week at ED program.
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atdt31_US
I LOVE that ... oh, weight isn’t necessary!  Well played. We got shuttled to a lot of different docs and when we were erring on the side of caution to do blind weights, I took a short cover sheet I could hand the check in receptionist, made eye contact, and said please be certain the nurse and doctor all read this before calling us back. Every doctor complied with finding ways to talk about things without revealing weight. Some still said really stupid things, but they could follow the directive on that one little piece of it (I included that her specialist ED dr did not want her to know her weight).  (They still often reminded her to  drink water and not juice or pop!?!?!?)
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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Scaredmom2019
HA! I know this is such a learning curve. I always applauded my D for drinking so much water. She never drank pop or juice even as a toddler and young kid. Now I have a fridge overflowing with sugary drinks. This world is not at all equipped for our ED kids. 

That's awesome you did all that for your kiddo when at the doctors. My D knows her weight because her friends have scales and she can't wear her pants anymore. I guess she is 17 and I need to prepare that I wont always have this control.

She truly is the highest weight ever in her life and I dont want to push her to gain much more as I think it will set us back.

Ironically she had a friend over tonight who kept telling me I had the best food (always new as I didnt ever buy junk like this before). But her friend had two bagels, a cookie ice cream sandwich and a whole bag of popcorn while here. My D had about a cup of popcorn. I hope one day my D will be able to eat like her friend but I doubt she will ever be that free. Was interesting to watch it tonight. 
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