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Mamaroo

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Reply with quote  #301 
Hi,

Thanks for the update. So lovely to read about your conversation with your d [biggrin].

To increase the calories, you can try and give her an ensure plus, which has 300 cal and doesn't feel heavy at all.

I also cooked rice in coconut milk - great way to add calories!

You can easily get to 600 cal for a meal by ensuring that you leave the fat on meat, skin on the chicken etc. Don't bother too much with veggies and salads though as they are very low on calories (add them if you like, but don't bother counting them), root vegetables excluded of course. Now that my d is WR I plate her food as follows: 1/4 for vegetables, 1/3 - 1/2 rice/potatoes/pasta and rest protein. She still doesn't have hunger cues, so has to rely on learned eating behaviour and having regular meals.


__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
tina72

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Reply with quote  #302 
Hi,
I would recommend to try Benecalorie. It is a small container of 44 ml and it has 330 calories and does not taste at all. You can easily add it to rice and to all noodle sauces. It is also great in porridge. It will help you to increase calories on a small amount.
Tina72
Honey_Badger

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Reply with quote  #303 
I once made up some index cards of my son's favorite snacks, around 350 calories each. I aimed for 5 a day, plus my son drank a lot of milk.

One of them was something like:
RITZ CRACKER SANDWICHES
8 Ritz crackers
1 T canola oil (artfully drizzled on top of the Ritz crackers until it seeps in imperceptibly)
1 oz cheddar cheese (about 1 thick slice - cut into four quarters)
(a couple grapes)

The crackers are 128 calories
1 T oil is 120 calories
1 ounce cheddar cheese is 114 calories

total: 362 calories


SPAGHETTI
3/4 Cup spaghetti  (165)
1/2 Cup Rao's marinara sauce  (80)
1 T olive oil  (120)
1 T parmesan cheese   (22)
(a little parsley)

total:  387


atdt31_US

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Reply with quote  #304 
Journaling / A Day in the Life of One Type of ED:

1.  Woke up normal time.  Ate bowl of beef barley soup for breakfast.  Took meds without delay or resistance.  Did reject the muffin I had planned for her to eat in the car on the way to school.  

2.  Went to school and ate whole lunch plus the extra snack and dessert plus the snack the after-care program offered "because I was so hungry"

3.  Got home and when offered dinner out, was excited and, from a list of options I provided based on geography, she picked a sushi place (she will not eat any fish at all but I told her they'd have rice and chicken).  Stopped by cake place on the way to get myself the best gluten free dessert I know of and she also got a small cake for herself (we took them to go).  

4.  Got to sushi place and she read the menu and had her selection before I did.  Asked if she could get two things.  I agreed, blindly, and when the waitress came she asked for teriyaki chicken and a sweet radish roll and asked if they could add carrots.  I was surprised, to say the least.  Edamame came out as app and she tried it -- liked it okay but not the "fur" on the pod, so squeezed some out and ate the off the plate. Said she'd eat just the pea part at home but no furry part -- I had told her they were high protein and she said I could add them to some stuff.

5.  Then our meals came out.  She was beaming, kept saying how she loves this place, called it heaven, and happily ate 6 out of 8 of the roll pieces and a very large portion (I likely would not have eaten as much) of the teriyaki chicken.  The chicken pieces were each two big or three small bites.  She ate it quickly, and raved.  

6.  This from the girl who had stopped eating postage-stamp sized pieces of meat at home for a bit -- never verbalized it, just noticed she was eating small or shredded meat better so I started just serving it that way to get it in her without stress.  I will def be going back to some of our old meals with "real" pieces of meat.  

7.  She ate and said she was full but it did not hurt. Said did not have any tummy pain all day and felt really good and happy.  We reviewed she had eaten protein with breakfast and also had a large bowel movement before school, and that she has not missed any medicine for a long stretch (she usually resists at least one day per week) and maybe we should see if we could keep this going to see if she could be the boss of her tummy pain by doing these things.  

8.  She is getting braces tomorrow, and really really wants them, so that is at least part of her great mood today -- but I think also, her tummy is doing well because she is stooling, eating, and medicating better in the last 8 days or so, all in a row.  Took nighttime medicine quickly and well tonight, too (this is usually the one she stalls on or begs to skip).

9. I swear, days like this, it is truly impossible to see how any doctor would look twice at her, how anyone could say there is an ED, how anyone would think for a moment she should take psych meds and buy the risks they come with.  (we have not agreed to give psych meds to date, but her therapist suggests it, as does her ped, although neither give much detail on what, about her, makes them recommend it -- and the child psychiatrist is not jumping to meds yet).

10.  I have no idea what she weighs because I have been banned from weighing her, and there is no system in place for anyone to weigh her.  We see child psychiatrist/ed dr in three months -- I think it unlikely I live with the no-weigh rule that long, but as long as her state is for sure good, I will try. 

11.  We know braces right now might backfire, but for a variety of reasons I have convinced myself that now is as good or bad a time as any and she really wants them and has promised to not reduce intake as a result (based on pain or worries of food getting stuck in them at school lunch).  Time will tell.

__________________
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. FWIW ED-D is a fraternal twin and we have no other kids.
Mamaroo

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Reply with quote  #305 
Hi,

Thanks fot the update. I am in the same boat as you with no 10:

"10.  I have no idea what she weighs because I have been banned from weighing her, and there is no system in place for anyone to weigh her.  We see child psychiatrist/ed dr in three months -- I think it unlikely I live with the no-weigh rule that long, but as long as her state is for sure good, I will try."

We were discharged in December from treatment at our local hospital and referred back to our GP. We went to see her in January for a medical check up. The dr told my d she could choose supper (snack after dinner), both what she wanted and how much. That ended in disaster, so I had to claw back supper otherwise she would just be having nothing. I am not going back to her! So we are without dr and without scale. I'll will be measuring her height to make sure she is still growing. In the meantime I'm looking for a new gp.....

So happy to hear the dinner out went to well!!!

__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
atdt31_US

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Reply with quote  #306 
Mamaroo -- changing or being between doctors, or even with one you'd like to move on from, is stressful.  Sorry for you to have that experience.  Our original pediatrician retired two years ago and I'd say we are still a bit iffy with real trust in the new provider.  I suspect I will blind-weigh at home at some point, especially if I start to see an uptick in anxiety or lessening of state, just to be sure there is no loss occurring -- I am not wiling to have that happen unchecked for three months.  The odd thing about taking away the scale is that my d is proud when her weight goes up, and does a happy dance that seems totally genuine.  Oh well, I have fought the doctors on the big stuff I think can hurt her (sometimes I fight to get more treatment, sometimes I fight to opt out of some forms of treatment offered) -- so I am not going to battle on this point right now.  But it seems very inconsistent with what others on this forum experience ...


Braces went on this morning.  Orthodontist knew her eating situation and said some helpful things to her about being sure to keep eating and that smoothies and shakes would be great on days she had too much pain for steak.  Definitely worth having let him in on our concerns before the appointment!  And my d is grinning ear to ear, thrilled to have braces so she is one step closer to a nicer smile.  Big, and needed, confidence boost for her right now. 

__________________
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. FWIW ED-D is a fraternal twin and we have no other kids.
Mamaroo

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Reply with quote  #307 
Hi, Atdt31_US, so glad she is happy with the braces and that the orthodontist was singing from the same hymn sheet!
__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
Honey_Badger

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Reply with quote  #308 
Your sushi restaurant story sounded so familiar to me -- when we were in the throes of it, my son discovered Hibachi restaurants and ate so much more food there than he would at home!  I went into a great deal of debt that year just paying for meals out, but it felt worth it.  [smile]

Don't you just wish someone would invent a secret scale chair? Kids could sit in it and it would print out their weight up on a secret printer in your bedroom....You could know and they would be none the wiser....

Great news on the braces!  We survived wisdom tooth surgery this month and are headed towards braces come June with much trepidation.  




atdt31_US

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Reply with quote  #309 
Thanks Mamaroo and HoneyB -- 

Braces are going okay.  Not as well as I had hoped.  Not as poorly as I had feared.  Day two was the worst so far, but we are really babying her on soft foods so we'll see how long it takes until it feels like she is eating normally again.  Volume is probably down  bit but not huge, it is more of the challenge finding the right texture, etc, to get a "good enough" amount in her.  

Tylenol does not seem to be doing much for pain, but Orajel has helped a lot.  It is sort of numbing (she says) so eating with it is difficult, but it has really been the best thing to make her feel better between meals and at bedtime.  Tomorrow we might try Ibuprofen and see if it is more effective than the Tylenol has been.  

Her sensitivity to the braces and having real struggles eating real food so far (got them put on May 10), tells me we probably were wise to put off the oral surgery for two years or so.  It would have been much much more disruptive.  On the other hand, by doing it this way she'll likely have to be in some form of braces for four years instead of two.  And the surgery will be necessary at some point, it just was not critical that it be done right now so we opted to wait to see if we could get more weight on her so she could do well in the surgery itself, and withstand any weight loss a bit better.  

__________________
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. FWIW ED-D is a fraternal twin and we have no other kids.
Mamaroo

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Reply with quote  #310 
Hi,

I used to wear braces for 6 years in total and wore every type under the sun. She will get used to them very soon. Just keep on presenting the meals as per normal. If the pain persists longer than a week I would go back to have the braces adjusted, maybe they were set too tight. I hope the ibuprofen works better 😁

__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
atdt31_US

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Reply with quote  #311 
So far not great weight gain in the first ten days of summer, but the excitement of the last days of school; cleaning/purging the house to ready for houseguests; and houseguests all contributed to a slow start of Operation Weight Gain.  She is on board to start in full-tilt on Monday (supposedly), and has not lost any weight at all.  Still at 13.7 BMI which is a high in the last decade. 

The BIG NEWS is she is now drinking soda pop.  I am thrilled to have that extra 150-180 calories in her instead of watching her drink water with meals.  The bubbles were the problem with pop and for some reason she never has gotten a reliable pattern of drinking juice with meals.  So we tried a few ways to quickly get rid of the bubbles in pop ... One way is to stir in sugar, which does work pretty well and which she did not bat an eye at - this trick works best with no ice and plenty of sugar and vigorously stir.  The other way is to pour it all into one glass then dump back and forth between two glasses ten times or so -- each pour results in fewer and fewer bubbles.  She drank a whole can with lunch today and does not have bloating from it -- added 170 calories to the meal!  Hopefully this lasts.  (how odd that I have struggled to find a way to get my kid to drink pop, and do so by adding sugar, while all the other parents I know struggle to wean their kids from pop habits).

__________________
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. FWIW ED-D is a fraternal twin and we have no other kids.
Mamaroo

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Reply with quote  #312 
Great win Atdt31! I used to hate the bubbles in soda water and would give it a good stir with a spoon. Your added sugar sounds so much better!
__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
atdt31_US

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Reply with quote  #313 
Update:

1.  I took seven weeks off work beginning the first day of summer break in late May, and I will start work again in two days. 

2.  Goals for the time off included:

A.  Help her learn proper portions

B. Offer and ideally have her eat 400-500 calories 4-5 times per day to get close to 2000 calories in, which is nearly double what she would intuitively eat. 

C.  Reduce the amount of time we sit around the table from 50-90 minutes per meal to 20-30
 
D.  Get on a constipation medication regimen that works, her body tolerates, and she will take day in and day out, quickly

E.  Increase her growth curve in a slow and sustainable way. My fear has always been too fast a “forced” gain that results in rapid loss when the force is lessened, yo-yoing weights, damage to heart from rapid loss, trigger of RAN with rapid loss, spiked anxiety by greater force and/or from rapid loss of force lessened. She has never lost weight so I just wanted slow steady increases that are sustainable. 
 
F.  Hoping faster meal times and better stooling will, gradually, start to allow some life outside of the four walls of our house. Going into this summer, and actually still now, any outing of any duration must be planned around or calories are lost. It is taxing us all to have no ability to socialize or go anywhere spur of the moment.
 
G.  Similar to F, normalizing the house so that ED-d and/or her twin can have friends over without that meal or snack time being sacrificed.  It is not a fear of eating in front of others, but just that play would always trump eating, even though the friends eat like royalty when they come here.
 
H.  Possibly adding back in some prior staples she currently won’t eat.  This is low on my list of priorities but at some point I want to be sure she quit them due to a naturally maturing palate rather than some ED reason.  (Mac and cheese; pbj; oatmeal; pudding; bacon toast; eggs…).  She has a wide variety of likes, including all textures and food groups and temperatures, so I am content to feed her what she wants if she takes in the proper amounts in a timely way, for now.
 
3. We were home nearly 24/7 other than doctor appointments (17 appointments in 7 weeks - most but not all for her).  Very little other than grocery shopping; meal prep; meal supervision; meal clean up; tv; family games; supervise medication being ingested (45 minutes most nights); sleep.  Not normal life, for sure …. 
 
4.  As to this project, and in general, managing her future, we made her team captain so that she learns what and why she needs to do things we ask of her. This is tricky bc the providers don’t want her involved in calories discussions or to know her weight, but she has been educated on bone growth through food; anxiety less through food; better bowel health through food; better vowel health with shorter meals; etc.  Several months ago when we were confronting a need to differently address her issues, she and I spoke and I mentioned it being a team effort, and she volunteered she is Team Captain.  She still embraces the role and was mad recently when a doctor suggested we might need a higher level of care — she told me later she does not like him because he has no faith in her.  Of course I defended the doctor and pointed out how we do need him on our team (which I really mean), but I don’t mind if she wants to internalize it as a challenge to get to say “I told you so” down the road.

5.  I have sort of carved out our own path for this, after years of reading and reading and reading; years of doctors giving inconsistent advice and theories; years of trying versions of more traditional methods (full pressure like lsuye; no pressure to see if she does it when own idea and zero food stress; sneaky additions to up the calories; etc).  I have made a conscious decision to try it with her as team captain, knowing our goal is weight gain now and every year into her mid-twenties.  We are sort of addressing it like I imagine the parent of a preteen diabetic kid would — teach them and be a safety net as they are learning it.  To be clear, I do all the cooking and plating -- mostly because my kids are lazy and have never had to learn how, since there has never been a meal that was not important.  She gets input as to what is served and there is no real consequence of not cleaning the plate, other than, now, an open reminder that she is behind and need to pick a snack to make up for it (so far she is doing this well).
 
I have decided against doing sneaky oil or benecalorie in stuff like milkshakes because part of my goal is for her to learn proper portion sizes for her.  If she is really drinking or eating more calories than it looks like, she’s getting a false idea about what proper portions are for her.  So, at least as a starting point, she is eating what it looks like she is eating. I still add double fats to some meals in preparation (I have for her whole life) but I am not dousing her portion separately and am not accelerating the additions over what we have always done (double butter in rice-a-roni for example).  
 
I have honored the advice of her ED Dr. and most of you on this forum to say don’t get so specific as to outline # of calories per meal.  I actually think she would respond well to that, like HoneyBadger’s son did.  BUT I have been convinced that the risk is too great for now … maybe as she ages we will grow into that when we hand the reins to her more and have more confidence she is not going to have a precipitous weight drop that could trigger RAN.  
 
I only want .5 to 1 pound per week gain because I truly want to make this a sustainable path — I know ED recovery is not typically linear, but I am hoping in her atypical presentation, and an entire lifetime of knowing she needs to eat and weight more, she can learn it slowly and keep it going.  I fear a rapid gain will trigger hyper metabolism and make it harder to get in the necessary calories to gain; I fear a rapid weight gain will be unsustainable and I will be setting her up for weight loss and the damages that can come therefrom (heart, trigger RAN, yo-yo gains and losses, defeated spirit after she has tried so hard, etc).  I am not a doctor and I don’t actually know if hypermetabolism is more or less likely to occur with a faster weight gain, but given her individual history I am more comfortable with a slow and steady approach, at least until I have reason to think it won’t work.  

Results:  weight up 8 pounds since first day of summer break (May 25). BMI 14.7 which is the highest of her life. Grew 3/4 inch, which keeps her on her historic height curve at about 50th percentile.  Saw ED dr this week. Odd appointment but he did at one point say we had done an okay job. But he also talked about residential treatment as an option, as well as an SSRI, so not sure we made progress in his eyes as much as we did in my eyes. In the hours since leaving the appt d has discussed this all pretty much like an adult, expressing anger that the doctor talked about residential (she had to ask me what it meant and I did not lie) and she also said she did not want a pill for depression (I explained it also works for anxiety and she said she does not have anxiety about food, only public speaking and school presentations and she is not depressed — two days later, when leaving therapist, she said she wants to quit going to the therapist — did not offer why, but I suspect to show she does not need medicine).  I love it when they say stuff in front of the kids, gratuitously (he was not suggesting either residential or medication right now, just mentioning they are still options in the future), and we get to pick up the pieces for days, weeks, months later. 
 
Time will tell if our strides are sustainable. So far we have not triggered hyper-metabolism, so she is gaining well on 2000 or even fewer calories. So far we are being gentle and if a meal is not eaten we make it up half hour or so later with a milkshake or other offering she accepts. When I was off work that was okay bc we did NOTHING else. But now I need to go back to work .... so we’ve talked a lot about needing to get the meals in with the nanny and I fear the "saves" won't happen and we may slow the gain or lose ground. 
 
I have cooked up a storm and have freezer meals and snacks pre-portioned that hopefully will be eaten well for the nanny.  If not, we will quickly figure out Plan B.  If things go okay with the nanny, we will hold our breath again when school starts in a month, to see if she can sustain her new weight and keep gaining with the school schedule.  We will be working with the school and d to see how to add in a snack that she will be able and willing to eat (maybe two per day).  We will worry about those details once we get through the nanny weeks.  We leave the house in the morning about 7:40.  School lunch is about 12:30.  School gets out 3:00.  We pick her up from after-care at 5:30.  That is A LOT of hours to figure out food for (and supervision if she falters).  

DISCLAIMER:  My kid is ARFID and the only real evidence of it, as far as I know, is failing to gain to expected weights.  She has never lost weight other than for illness.  She has never had labs or heart testing come back showing malnutrition (she does have low bone density).  She has zero body image issues, no food phobias we know of, and no self harm.  She is probably a little on the picky side, but not in the way of many ARFID kids who might only eat three foods - literally.  She is not RAN and we are not “re-feeding” to a prior high weight — I am just pointing all of this out because I don’t want anyone looking at my ramblings and thought process above and try to apply it to their kid (again I have no medical training and it is all my fears saying I want slow gain rather than rapid gain — by and large, for more typical refeeding of different ED presentations, doctors seem to want rapid gain).

__________________
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. FWIW ED-D is a fraternal twin and we have no other kids.
Mamaroo

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Reply with quote  #314 
I think this is a great thread for AFRID children, thanks for starting this and updating. I was AFRID when growing up and also have low bone density ☹. Your d is still young enough to reverse it, though ☺. It is good that she is now team captain, unlike AN, where being in charge is not a good idea, I think placing some responsibility in her hands will motivate her to go outside of her comfort zone. I started eating a more varied diet at 16y and now am able to eat anything. Your d will get there 😁. Good luck for when you are going back to work!
__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
Foodsupport_AUS

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Reply with quote  #315 
A pound a week over the summer shows a good result from your efforts. Keeping it going as time gets busier is going to be hard, but hopefully will get her to where she needs to be. As her weight goes higher it is likely you will need to increase the calories to continue her weight gain, as of course bigger bodies need more fuel for maintenance. I hope you manage to keep her moving forward and towards better health. 



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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Honey_Badger

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Reply with quote  #316 
Well done adtd!!!  

You showed your DD can manage to eat that much food.  Now just to figure out the logistics when you aren't able to be on top of her every minute.  I love the concept of Team Capitain.  (I personally believe it will get even easier for you when the Captain understands about calorie counting and she is deliberately trying to up the calories, but I do understand your hesitance to take that step.)

Good luck with the rest of summer and fall!
atdt31_US

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Reply with quote  #317 
A Day In The Life of our type of ED (ARFID/Volume):

6:30 am -- woke up D with a milk shake (about 350 calories).  She drank it and went back to sleep (per the arrangement we made last night)

9:00 am -- woke up D and she came downstairs and I told her need to eat.  She chose a brownie.  Ate it all, along with her morning medicine.  Complained of gurgling and reflux.  Maybe the shake in bed had been a bad plan - that was our first attempt.

12:00 pm -- told D time for lunch.  She came right to table and ate the spaghetti I gave her (which s what she had requested earlier in the day).  The pasta dish was only about 250-300 calories so I also put out a glass of milk.  She drank it with minimal prodding.

12:45 pm -- I left for work and told the nanny, who was just arriving, that bfast and lunch were done and that she should FOR SURE have an ice cream snack and one other snack would also be nice because breakfast was a bit light.  I had the ice cream snack identified as the remainder of a carton of ice cream and left it the them to find something else (I have freezer meals and mini-meals and lists of snacks).

5:30 pm -- I got home (nanny left about 3:45 I think).  Asked D what she had eaten since lunch and she said a Twix Bar (both sides, 250 calories).  I asked if she had anything else and she yes, she got a snack after nanny left.  I asked what.  Answer:  carrots.  I held my tongue and did not even make a face.  

6:45 pm -- ate whole bowl of soup I gave her (she had requested this).

8:30 pm -- I came up from basement where I had been hanging out with non-ed-d for an hour or so after dinner.  I saw ED-D in living room with dad, eating popcorn.  Bummer, I thought ... carrots and popcorn are not great snack options.  So I started putting the ice cream in a dish, somewhat wondering what my reception would be when I took it to her in the living room.  As I was dishing it up, she came into the kitchen and saw what I was doing, smiled big and bounced back to the living room saying, "you know me so well."  I took the ice cream in and she is eating it all.

This day, after dawdling over breakfast for two hours each of the last two days due to stomach pain that I have every reason to believe is real, not feigned. Struggle with attitude at times, but really only when I ask her to eat faster than she wants or when she has stomach pain.  

We definitely have food and intake issues (and others), but her ED just still seems to present so differently than most of the other ARFID kids I read about (mostly selective in the literature). I know there are other ARFID/volume kids, but I wish there was an easier way to communicate with those families looking at the same sort of ED we are.  I learn A TON on here, but for the most part, I feel like much of what we need to do in this house is very different than what the providers suggest and what most people on here post.  We will get to the finish line (not even sure what it looks like at this point),  just slower and in a bit of a different path, it seems. I am so grateful for all the info and sharing on this board, but I wish there were others with this form of ARFID on here (and I wish they had named this something other than ARFID so we could find each other easier -- I truly think lumping so many different types of ED into that heading ARFID was a huge disservice).

__________________
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. FWIW ED-D is a fraternal twin and we have no other kids.
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