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atdt31_US

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Reply with quote  #101 
Thank you all for your responses and offers of help. Great to see input from Dr. Peebles as well -  thank you so much!!   I think at this point I am planning to:

1.  Continue gathering chronology and records for Katrini or whatever ED expert I might end up consulting with.  I know some of my questions but not all:
*  with her current level of (mal)nutrition, if I were have success either sneaking or pushing more calories/fat into her, is she in a category where I need to watch out for Refeeding Syndrome?  Or is that only with the kind of extra a tube feeding would provide?
*  how do i know if there is an ED now
*  even if there is not an ED, is her current pattern likely to lead to one? if yes, what will stop it? would tube feeding to get her up to weight cancel out that likelihood by re-setting stuff like appetite, satiety, brain?  Would starting to prompt/prod/push her again (even if a very watered down version of supervision compared to you all) make it more likely or not change the likelihood of it evolving into an ED?  
*  If simple anxiety (not an ED) and some actual physical things like gastritis, reflux, constipation, all play a part in her small appetite at times, does regular child psych working on anxiety seem like the best course, while simultaneously treating the physical things and trying to up calories/fat either with overt pushing or under the radar with sneaks?  
*  What is the chance that the root of the constipation is her underweight status?  That relationship is new to me since talking to Dr. Herrin and reading on here -- I am interested in this but it would not explain how her level of constipation is very close to her sister's who also has been on Miralax that long and is fairly dependent on it despite a huge appetite, high (for a kid) fiber, tons of hydration, etc.  

2.  Continue to try to get E to eat more calories by enhancing the meals she eats and possibly going back to some low-level pushing to get an additional snack in her that will be one of the mega-calorie items I  have found on here.  Hoping it can be a one-time push and not daily -- like tell her once there won't be family movie night unless your snack was eaten every day after school.  Not sure on this one, but toying with it. 

3.  Try to talk to Denver GI doctor on the phone and just see if he can speak to some of my concerns about her physical health and give me some of his thought process for why he thinks if she stays on this arc (bmi roughly 12.4) that she will ultimately prove to just be small but healthy.  Have him "show his work" on why he is confident bone, heart, puberty, brain will be okay at that level.  If he can make me understand it (not take me through Med School, but just explain a little why this is his opinion) it will help me not become so anxious when we have the sorts of hiccups we had President's Day and again the last ten days or so (with increased abdominal pain and smaller and smaller meals).

4.  I think the complaints of the last ten days (which caused me to finally post) have to be taken in the context that she was only getting 1/2 her Miralax dose.  I had no idea my husband and i had not been on the same page to re-up it to normal after the first two days after her day of throwing up.  So - it seems possible to me that most of the problems of the last ten days was caused by the constipation. I don't know about the reflux and liquid actually making it into her mouth, but the discomfort and small appetite make sense to me given that she was truly very backed up.  I am hopeful that after a day or two of double-doses she will empty out and we can pick up where were before President's Day - which was:  parents on the Denver Plan and removed the stress around eating she has felt her whole life, every single meal; she ate willingly and I can make more use of that volume by using some of your tricks; she has no "tiny meals" where she is done after two bites (I think that may prove to be either Prilosec being stopped or constipation related)(she had none on Prilosec once it was stabilized at two doses per day); she has no complaints of reflux (those only started to increase to an alarming point after President's Day when we messed up the Miralax)(I do not know if constipation can lead to reflux, however); she is energetic and holds her own in all ways with her peers; she remains on her own curve.  IF that is the result of getting this constipation taken care of, I still need to follow up on why her current BMI is okay for the long-haul BUT at least I won't be questioning whether she is deteriorating rapidly like I was so afraid of since President's Day.  If, after the constipation is resolved we do not see a decrease in the number of "tiny meals" and stomach and reflux complaints continue, I am fairly certain they will order a scope and we'll have to go from there.  

Ultimately, Dr. Peebles gets to one of the biggest questions when she writes: "It certainly happens - everyone is different, but if your kid is not gaining, and she has had a thorough medical workup, then she just needs more food, period.  So whatever folks in Denver or anyone else say, that will end up being the bottom line, and the work won't change."  --
My question is:   what is meant by "if your kid is not gaining?"

If she goes back to her pre-President's Day situation and "gains" to stay at 12.4 BMI as her height increases and her height stays on its established curve, is that sufficient gaining?  Or, regardless of her height arc and seeming health in terms of no delays and has energy on par with peers, etc, does a kid need to rise to the X Percentile BMI (or some other marker - I don't know how to say "state not weight" if she is doing the things I just described)?

And to be fair to Denver GI, I did not mean to imply that he said to let her eat intuitively and assume she gets it right.  I understood him to say let's see what happens if we let her eat intuitively - that is, quit prodding for more bites every meal and quit telling her she needs to weigh more -- and see what happens.  He couched his plan in the terms that if she started to decline or if she had certain other indicators (he mentioned bone but then deferred to the Bone doctor) we (her medical team) would need to create a different plan.  I believe he thought she'd gain a bit on the curve if the stress was removed - and although she has not gained so as to raise her curve, she has not dropped other than is specifically attributable to physical causes like Strep, reflux, stomach bug, and now, apparently, stupid parents who messed up her dosage.  I am still not completely comfortable with his assessment that saying where she is is acceptable, but I don't want to leave you with the impression that he is in a camp that says "kids will eat when they are hungry, period."  

However any of the rest of it gets answered, I need to get some recipes that become her new normal and incorporate some of your great ideas.  I have not yet had any luck with the ones I've tried, but the last two days have not been a normal schedule at all, coupled with real distress from the constipation.  I intend to devote a ton of time to reading your recipes and figuring out how to get more calories/fat in her, for the time being, without adding back in the stress we had pre-Denver.  

Thank you all so much.  I am so relieved that *perhaps* a lot of the stomach stuff is just the Miralax mess up and not other things.  And eventually we will have to figure out how to get both kids off Miralax, but for now I can live with that (assuming it is familial and not tied to E's nutritional status).




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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.
Trytrytry

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Reply with quote  #102 
Answering your question re: difference between tube types: NG (nasogastric ) is the type you see that come out your nose, they can either be left in for a long period of time - the tube can come in and out easily there is nothing 'holding' it there other than some tape. They can be kept in 24hr a day (and you would have to carry a pump around in a backpack or stuck at home/hospital) or they can be left in constantly, young kids especially don't find them particularly uncomfy I presume due to their sinus anatomy but don't quote me.and you can just 'bolus feed' (get a big syringe and squirt in 100ml or 200ml or whatever all at once like a normal meal) they do need replaced oftn as they can get blocked but young kids seem to cope well especially if compliant. They are 100% reversible and no procedures and scars. You can put them in and out each night easily, that's how my adolescent d started as she didn't want to go out with it and got used to self inserting. It is not a big deal but I say that from the perspective of someone used to seeing there kids with central lines and ports and tubes etc. I can imagine it seems quite confronting if you aren't used to the medical world gadgets

G tubes are more suited if she needs feeding for life. It is invisible With normal clothing and they put a hole directly from the stomach through the stomach wall, abdo muscles and skin and start with Stuva sticking out (later can be fitted with a low profile button) they need care - it is easy for the skin to break down, over time fibrous tissue forms and it is less of an open wound and they can be removed but will scar.

And especially if you are using for an ed where it is hopefully temp, you would want an NG. My d who is going to be dead from med problems in a few years (sorry if my bluntness offends but that is how I deal with stuff) has a g tube and mostly medical kids have them cancer, cf, other high calorie need illnesses that aren't going to get better.



I also have found drs tend to find what they are looking for - including ed drs.
I call it the hammer effect.
If you have a tradesman and he only has a hammer in his tool belt. Every solution for your problems will be solved by using a hammer, not a screwdriver or a saw etc. a hammer might be able to achieve a result - bash in a screw say but it will not solve the underlying problem and not provide a long term solution

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I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
Trytrytry

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Reply with quote  #103 
The reason I asked about being premmie, we were told that when my grandkids was recentoy born at 32 weeks, (from my ed d who had a bmi of 11 when she got pregnant and weighed less after giving birth) she was told that as preemies are force fed by tube - and I have seen them work it out in the hospital putting exact calories to the micro ml in and sucking it up a few hours later to see what hasn't been digested thru their tummy and add different feeds etc. the babies are less than 1 kg and spend their time being 'force fed' they have to learn to suckle and even once they master a teat if they don't finish a bottle the remainder goes in their tube. So for the first year or so of their life, as they are so small we were told they are always fed according to what their equations say they need for their brain etc send they don't learn satiety cues like a normal breast/bottle fed full term baby who can pick and choose when they eat. Premiers are so tiny they are force fed no matter what - although I think this theory was just that, an educated guess theory based on a few anecdotal observations. But it doesn't sound like your twins were that tiny and premature only weighing a few hundred grams.

That was my reason for asking.

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I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
atdt31_US

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Reply with quote  #104 
Trytrytry I am sorry to hear of all your kids have been through.  I am still wandering around the site trying to get to know you all and be able to put a name with a face (or situation to a username).  I am sorry for all you and your kids have had to endure -- and I thank you for finding the time/energy to hang out here coaching newbies. 

When an NG is left in place, taped on the face as I understand it, can the kid still eat orally?  I mean when the tube is not being used, is just hanging there, I assume down the same pipe the food would get swallowed? 

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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.
Tali97

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Reply with quote  #105 
Yes the child can still eat orally when an NG tube is in place.
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18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
atdt31_US

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Reply with quote  #106 
Quote:
Originally Posted by Torie
ATDT31 - Can you tell us what we could do that would be most helpful to you at this point?  Would specific tips about increasing caloric density and fat levels be helpful?  Or?  

-Torie


I SO appreciate this question.  My main question right now is:  is there a limit to what I can safely (health or comfort) add to her food in terms of HWC (heavy whipping cream).  She has always gotten "a lot" of fat, by my standards before I traded sleep for reading ATDT by added butter, primarily.  But now I am HWC-crazy.  This afternoon she played outside after the nap and bowel movement (progress, not completion) and then ate all the dinner that was served and asked for oreos.  I added 1 TBL HWC to her portion of creamy chicken soup and 1 TBL HWC to her chocolate milk.  She ate/drank both without prompts -- she does know from the 7 years prior that she is expected to eat what is served and seconds are always available.  

Is there a point where I can add too much too soon and cause discomfort (more tummy pain caused by parents is the last thing I need)?  Just looking for some reasonable goals for how much to add, say in one meal where I am doctoring her individual portion.  I get that I need to look at other avenues like snacks to work in other calorie-bombs.  

Thank you!

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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.
Torie

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Reply with quote  #107 
Perhaps some others can quantify their use of HWC, but my impression is that some here have gone through it by the gallon. Literally. I would suggest canola oil where possible because it has almost 3x calories as HWC of same volume.  It's quite amazing how you can add a few tablespoons of canola oil to a cup of soup, whip it up with a fork and voila! Can't even tell. Olive oil is also a good thing, but has much more flavor than canola oil, so canola oil is best if trying to avoid altering the flavor.

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
atdt31_US

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Reply with quote  #108 
Quote:
Originally Posted by Torie
 I would suggest canola oil where possible because it has almost 3x calories as HWC of same volume.  

-Torie


Perfect. Exactly what I need.  Thank you.

So --- this Refeeding Syndrome - do I need to be wary of it at all for what I'm talking about in terms of adding way more fat than the fat she is used to?  Other than her stubbornness (and my wimpyness at least for the moment), is there any constraint on upping her intake?  I know - I've been pretty unsuccessful at it so it is unlikely I could suddenly get great at it, but if I do get great at it, is there a health concern given what i understand is a pretty low bmi even as compared to some of your ED kids.  

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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.
YogurtParfait_US

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Reply with quote  #109 
I used 3-6 tbsp per day of HWC when re-feeding my 7 year old--about 1T per glass of chocolate milk, and the rest, if I used it, was in scrambled eggs or french toast or pancakes in her version of what was for breakfast.

I didn't use any extra oils or other added fats, except for drizzling extra sesame oil over her stir-fries and using extra butter when making her eggs, and drizzling extra olive oil over her pasta. She likes mac and cheese, so I made a mac and cheese casserole with HWC in it and would give her that if I was making a meal that I knew would be a problem for her (of course, at first, every meal was a problem for her, but, I tried to be "easy" on her by not requiring her to eat things she did not like before getting ill).

My basic guide on what to feed her at meals was to feed her about as much as I eat for meals, and have 3 snacks. A "snack" was something like a muffin (standard, home-made, regular sized muffin), a fruit cup with some cheese slices, a baggie of goldfish crackers .... Meals were all from-scratch home-cooking, tipped toward things she preferred, but, in general, following what the family usually ate. Lots of Japanese and Chinese dishes, some Western dishes like pastas, soups, stews, steaks, baked chicken/mashed potatoes/gravy, veggies, etc.

This is where I started. I did not count calories. I did magic plate with supervised everything. She gained about 2 pounds per week, so that showed me I was on track. Probably it was 2,000-2,500 calories per day, but not the same every day. My view was I know how to feed a person. She is a person. I can feed her. She started around 43 pounds, if I remember correctly, and 12 pounds later she was "re-fed", but of course, kept gaining and growing from there, with ongoing meal support.

I agree that there is no harm in doing magic plate to support full nutrition for a malnourished kid. Food is the best medicine, the only medicine, for malnutrition, and as Dr. Peebles said, a malnourished kid may not want more food because of gastric distress and out-of-whack hunger cues.

My daughter's hunger cues, by the way, have come sailing back and are 100% healthy now. She just had dinner, but is going off with dad for two hours to pick up some new golf clubs, and she grabbed a snack to take along "just in case I get hungry."

Those are beautiful words!

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"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
atdt31_US

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Reply with quote  #110 
Thanks, YP.  What you just described is what I feel like we did for the 7+ years before Denver.  You had great success -- this time around I clearly need to be more cognizant of total number of calories, not just "more butter" and the like.   I need to clear my head, get some sleep, let go of the terror, and hit it hard to learn these recipes.  Thanks again, and I'll shoot for 3-6 tbl of HWC or canola per day.  So glad to hear your d is doing great!  
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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.
Psycho_Mom

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Reply with quote  #111 
Hi,
The relative proportions aren't the same, because my d was 15 and 120 pounds when I was refeeding her, but here's her refeeding smoothie recipe anyway, just to give you an idea of what we're talking about here. This turns out to look small (8 oz) but have about 1000 cals:

1/2 c full fat yoghurt  (150 cals)
1/2 c hwc  (400 cals)
1/4 c canola oil  (480 cals)
milk (to thin)

Once when I was tired I put in 1/2 c canola oil by mistake and d did not notice a thing.

In other words, my kid's brain was starving, and I wasn't in a mood to mess around with tablespoons.

best wishes,

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

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Reply with quote  #112 
I refed my 7 year old this summer after she loss 10 lb. it took about 3 months to gain the weight. Lots of tummy aches. Good goal is 2 lb a week but do the best you can. i started her with 3 meals (500 cal), 3 snacks (250) then adjusted as needed. Even though she was only under weight short time it was difficult to get her back to eating enough calories, she lacked normal hunger and stomach had shrunk so she struggled eating so much. My d had hard time with breakfast, tired and time crunch so was did A lot of whole fat chocolate milk with carnation instant breakfast for breakfast, if I could get her to eat more we did, but this was minimum. I found she was usually hungriest after school so made this more a mini meal instead of snack. D gets home at 4 and goes to bed at 8 so struggled with getting 2 snacks and meal in that short time. I found If I gave too much earlier in day following meals were harder. Easier if put bulk of extra calories at bedtime because it didn't interfer with later meals. Bedtime smoothy. If we had bad day would wake up in middle of night and feed some smoothy. At this time d did not have any Ed diagnosis and I did struggle with requiring to eat when she was not hungry, But, it was clear she needed to gain the weight back. The tummy aches got so bad I took to doctor and they tested for celiac and told me to stop milk products as maybe lactose intolerance. Stopped milk and within days tummy ache was gone. though milk was problem. That same weekend she grew like two inches and she hit goal weight. After few days d really wanted milk so tried again and no tummy ache. I think her stomach just finally got used to how much she needs to eat. Other little thinks that helped. No water, juice or milk for drinks so she would not fill up on water. Foods dense in calories helped. Distraction. I let eat with tv on . Would encourage with : after you eat you can play/ have computer time. If you don't eat enough, you don't have enough energy for active play and would be limited to less active play. Puzzles instead of going outside if didn't finish meal. If she likes veggies would only serve if up the calories, add butter, cook in oil, ranch dressing. They have Lots of bulk and little calories unless you add fat. I will say when they start gaining it is all in tummy and face. Makes you feel that you are just making them fat, but after growth spurt it redistributed. With my older d who was underweight a long time it has taken a long time before growth. The body needs to feel secure that food will continue to be available before it will spend energy to grow. Since your d has been underweight a long time it might take a while, stick with it.

Tube feeds can help but are not without issue. Biggest problem is since they receive most of calories during night are not hungry during day. Friends niece has cf and when young could not keep up with calories, needed 6000-8000 so started on night feeds. She basically stopped eating during day. Would nibble on things but never really eating. Tube feeds tend to cause mild gi upset, stomach aches, diarrhea. People just not made to live on liquid diets. As young teen she really wanted to get rid of tube feed so could wear normal clothes without button showing. As a highly motivated teen she did get off it but was huge struggle for months. She went though normal refeeding issues ie tummy aches, struggling to eat when not hungry. Really would try magic plate/fbt style feeding before NG. It's really not about forcing them to eat as requiring it. Really think is is very much like 1950 style parenting, when you couldn't leave dinner table until mom said so. I also think of it as Michael phelps type nutrition. If you need to eat a lot of calories, low fat, veggies won't get you there, need calorie dense foods or you will spend all day eating.

I know it is so hard and without diagnosis or reason for it adds to the difficulty. Send virtual support.

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Reply with quote  #113 
Hey guys & atdt:  CHOP definitely does take kids under 10.  We see them all the time.  Not sure who you spoke with, but feel free to email me directly at peeblesr@email.chop.edu.  Thanks - RP
atdt31_US

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Reply with quote  #114 
Quote:
Originally Posted by doctorp
Hey guys & atdt:  CHOP definitely does take kids under 10.  We see them all the time.  Not sure who you spoke with, but feel free to email me directly at peeblesr@email.chop.edu.  Thanks - RP


Thank you Dr. Peebles. I edited my above post to correct what I had written regarding what age CHOP will see, and I will email you. Thank you!

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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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Reply with quote  #115 
ATDT31 - re: What is gaining?

The tough thing is that without your growth curves and a thorough history and physical by someone who knows about this stuff, I have a hard time buying that truly a BMI of 12.5ish is 'on her curve'.  Makes me worried that something is amiss.  I could buy the 5th or 10th percentile, or if she was a preemie twin with intrauterine growth retardation I guess I could also buy it then.  But I'm hearing she is a twin, but nothing else.  So then, yes, I say she needs a good evaluation by someone who knows how to look at these curves, who will check her growth velocity over time (and knows what normal is for her age), who will stage her pubertal development and also check hormone levels and make sure she is not suppressed, who is used to looking for malnutrition's side effects in this age group.  Without this, I wouldnot feel comfortable saying that really she is 'on her curve'.  So I think you are completely in the right spot to push for weight gain regardless.

I also don't really care whether or not it's an eating disorder.  From a medical standpoint, it doesn't matter.  If it is, that will become clear in time.  But what does matter is that someone experienced makes sure nothing ELSE is going on, and then helps you get her to gain weight.  And if there are behavioral issues that emerge (and there will be), then there should be a therapist to be your cheerleader and give you tips/structure as you do this daunting work.

Those are my thoughts - hope they help - Rebecka Peebles
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Reply with quote  #116 
Good luck atdt31, you have had the toughest time of it, my heart breaks for you. 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. 13.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
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Reply with quote  #117 
Amoma - does your daughter drink shakes/smothies now or does that aversion remain?
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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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Reply with quote  #118 
Well, we've had a good day or two of more normal eating now that the constipation is mostly resolved.  The sinus cold is also not seeming to slow her down much at this point.  The import of those two days of good eating (for our situation) is that she ate most of every meal -- and because I've been hanging out with you guys for a week, that means she ate at least an extra 4 tbl of either HWC or Canola and also more pre-packaged fat bombs like hostess mini muffins.  I do not count calories but I can tell you that yesterday and today in particular she significantly increased her calories over, for sure, the prior ten days.  Can't quantify how much, but a lot by my standards.  

MY QUESTION/FEAR:

She was fine after dinner for 2 hours then when going up to bed had a throw-up burp/reflux and tummy pain.  Wanted me to take her temperature and I felt her intending to tell her to go to bed - but she actually is warm and a bit sweaty in the hair -- but no fever at all (97.8).  I gave her a tums and was gonna put her to bed when she said, why is my tongue white (that was actually before the tums).  I looked and sure enough I think she has thrush.  She never had this as an infant so I've never seen it, but she did have a yeast infection in her esophagus so of course I am a bit concerned.  


So I am a bit scared.  I know vaguely of this thing called refeeding syndrome, but I don't know really have a good understanding of what is, who is prone to it, what it's warning signs are, how quickly it comes on, etc:  and I don't know what it means that she is sweaty and has thrush on day 2 of way more calories.  I am going to not sleep tonight worrying about her having a problem in the middle of the night (an hour ago I was looking forward to finally sleeping since I could finally say her eating is back on track in terms of her normal volume).  Starting tomorrow I will drop back to our normal, mild increases and keep her where she is or do a very slow and steady approach until I hear back some more definitive medical news on her status.  In all likelihood it means she is sweaty and nothing more and she has thrush and that stinks because she's never had it before and it might mean another scope is coming her way -- but after the two weeks of high anxiety I have had, and the dive into this pool of information, I have to say I am scared.  Can't wait for morning.



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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.
YogurtParfait_US

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Reply with quote  #119 
We are not medical folks here so can't tell you if your daughter specifically may be at risk of re-feeding syndrome, but it sounds to me like maybe you've upped her calories by 300-400 calories, at most. I don't think that amount would put anybody at any sort of risk. But, that's just my opinion-as-a-mom...

My understanding of refeeding syndrome is that it occurs in starving people whose electrolytes are way off, who get suddenly fed a lot of food.

Those who know more than I, please set me straight if I am wrong! [wink] (and I am very glad to edit out any misinformation!)

Sending warm support!

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"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
atdt31_US

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Reply with quote  #120 
Quote:
Originally Posted by YogurtParfait_US
atdt31, glad my "playbook" was helpful! [smile]


YP - I've only been here a short time, but I have read about a bazilion of your posts since you also have a little one.  You are a great mentor to the new kids!  Thanks for sharing your experience, and time, on the forum.


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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.
atdt31_US

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Reply with quote  #121 
YP - We just posted at the same time - weird!  I am hoping you are right.  The worry for me (aside from my sleep deprivation and type a personality) is the length of time she's been malnourished.  I have always known she was underweight (and always tried to change that) and she has always had a diagnosis of Failure to Thrive.  But in October 2014 for the first time, the diagnosis showed as Malnutrition of Moderate Degree -- and that was for some reason shocking to me.  I think it changed either due to a billing code or perhaps after a certain age they don't call it FTT -- either way she is, and has been, too thin - but that wording was the beginning of this part of the anxiety roller coaster for me.  I am going to sleep in her room tonight and trust we're all good.  I have some doctor appts coming up that should shed some light on some of this for me -- her Ped already thinks I'm nuts so i might as well seal the deal for him with a question about refeeding syndrome and whether, with simple oral feedings, we can mess this up.  There are many great things about our Ped, with one being he is willing to say he doesn't know and find an answer.  
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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.
sk8r31

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Reply with quote  #122 
Hi atdt31,

Hope you can get some much-needed rest.  As YP mentioned above, Refeeding Syndrome is relatively rare, and found in malnourished patients, whose calories are 'upped' substantially all at once, rather than gradually.

We are not doctors here, and medical oversight would be a good thing, but I believe if we are talking about 300-400 calories more per day at this point, your d is not at risk.

Here is an article that I pulled off the FEAST website that discusses refeeding syndrome:
http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/clinical-care/nutrition-support-team/nutrition-articles/McCrayArticle.pdf

Warmly,
sk8r31


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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
AnnieK_USA

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Reply with quote  #123 
atdt31, here are a couple of links to pages on the F.E.A.S.T. website that may have some answers for you!

Effects of Malnutrition

Re-feeding for Anorexia

Preventing Re-Feeding Syndrome



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Daughter age 28, restrictive anorexia (RAN) age 11-18, then alternating RAN with binge eating disorder and bulimia with laxatives, is in remission from EDs for 3 years after finally finding effective individual therapy. Treatment continues for comorbid disorders of anxiety, ADD and depression. "Perseverance, secret of all triumphs." Victor Hugo
atdt31_US

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Reply with quote  #124 
I wanted to mention that although at various posts I may have seemed frustrated with the various doctors, they are all awesome and it is our situation that is frustrating.  I would hate for anyone to read this down the road and conclude I am unhappy with the doctors or their care.  It is quite the opposite.  Whether it is ultimately determined that they missed something or not, they have been very hands-on and have ordered tons and tons of tests to exclude things, and have really been right there with us for almost nine years to try to figure it out.  And in the first year, the doctors navigated scary territory for us many times, always getting it right and knowing how to keep her hydrated, or what med would soothe her stomach to let her start to feed again, etc.  So far E is just a bit of head-scratcher and that is not a failing of the doctors.  So, since I named some specific cities and hospitals, and I realize some people might choose where to go or not go based on these threads, i can assure you that I would highly recommend any of the doctors E has had -- not sure if I would in the context of ED because I am not yet a part of that world and don't know their role in it.    

I guess I really am feeling like she is doing much better because three days ago I could not have thought outside of the walls of this house to realize I may have unintentionally thrown some great doctors under the bus.

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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.
Psycho_Mom

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Reply with quote  #125 
Hi,

If you have a concern about thrush and/or yeast (basically same thing, right: candida) then you can get a good probiotic (the refrigerated kind) from a health food store  and give it to her daily. Can't possibly hurt. (Neither can 3-4T canola oil a day, IMHO!)

Has anyone recommended Freeing Your Child from Anxiety by Tamar Chansky yet? Sounds like you could both benefit from this awesome practical book on understanding and handling anxiety. I know I and my d both have.

best wishes,

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