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yamamama

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Reply with quote  #26 
I have not posted here before and am totally new. We ceratinly have ED now, but have been through a good amount of GI stuff from birth. It strikes me that you might want to look at alternative medicine doctors views on this. We have been helped tremendously with our GI issues in the past by alt med. Needing prilosec and miralax longterm would be regarded as a definite sign of something going on in the gut, despite what your docs are saying. My kids have gone through fourteen years of this and working on restoring gut flora, identification of problem foods etc. . .has helped a lot. But it has not always been easy to stay on top of it! Hugs.
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Reply with quote  #27 
Same here. We had to do mirilax, suppositories, and even an enema... My D was really horribly constipated for about the first 5 months of refeeding. I was thinking the exact same thing. And unfortunately there is not much you can do other than probiotics, hot baths, water bottles, and back rubs.
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atdt31_US

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Reply with quote  #28 
Thanks again for all your replies and questions.

The easy answers:

1.  She was delivered at 35w 5d.  I had pain that did not subside with rest that lasted for about a a day, so I called the OB and they said head to hospital, they took labs and said my platelets were low and the pain had been my liver shutting down.  So they did an emergency c-section (general anesthesia) and had the kids out within the hour.  I had developed HELLP Syndrome, which involves blood platelets, liver, and kidneys.  The only cure for the mom is delivery.  Luckily, at that gestation the kids did great -- basically no intervention in the NICU for E and never any suck/swallow issues.  I mention the HELLP Syndrome only because, much earlier in this journey, i (with no medical degree) focused on it as a potential contributor to E's eating/weight issues so I spent tons of time trying to find a tie in to a baby in that environment (my sick body) and subsequent Failure to Thrive.  There is a rare metabolic disease that can be present in a fetus that can manifest as HELLP in the mom -- that was why they did the metabolic testing on E. She was negative for that and the doctors do not see any link to their birth situation that helps explain her current situation.  Being a premie likely contributed to the MSPI and GERD as an infant, but I think that is about it.  UNLESS, the pain she associated with food (rightly) from that year of life still plays a role in what I'll call early satiety or a non-willingness to eat past a feeling of fullness -- that was sort of what we tried to address by the years of getting a few more bites -- so she could see if she ate some after she felt full, nothing bad happened -- like worse pain or vomiting.  While we got in some extra bites this way and from 15 months to 3 years or so maybe kept her from looking as being as she could have been, at this point a few extra bites is not the difference between better health and whatever her health is without the few extra bonus bites each meal.  From that perspective I think the Denver guy was right.  
 
2.  What does she do when we insist she eat more?  She pretty much always eats her fruits and veggies. The battlegrounds are main course (carb and protein) and milk.  We usually have to demand the milk be drunk (we still do that even under Denver guy's approach).  She drinks it or she does not get screen time after dinner, or to play a game after dinner, etc.  Usually within ten minutes of the end of the meal, and multiple requests, she drinks it.  For the food, pre-Denver plan, she would often eat 3/4 or so of the offering of main course.  If that happened, we'd usually get a few more bites in her and got results sort of like the milk - took it in okay but not "normally."  The real problem is on the meals where she sits down excited to eat, sometimes even commenting it smells good, seems to really dig in a few bites, and then a change in demeanor (sullen) and quietly pushes it slightly away and is done.  If asked, she'll say tummy (hurts/throw up…).   Getting her to eat after that type of refusal is rare.  We have to date believed there is pain and that gets her a pass for that offering for the most part.  Usually she'd eat an hour or so later -- and usually ice cream or something.  But sometimes she'd go to bed with very little in her, with her last real intake being afternoon snack.  By morning she'd usually be back to eating well for several days.  She used to have frequent tiny meals, but that does not happen nearly as much currently - I'd guess one or two tiny meals per week now (not sure if Prilosec helped or Denver plan, or both).  Back before the Denver plan (and most recent round of Prilosec), when we saw a tiny meal and tried to get her to eat, her response was to simply not eat.  Quietly leave the table.  Be willing to not watch TV or take part in games.  No yelling or hysterics or anything.  She'll do this little sad face and pathetic moans and hold her tummy and generally sell it that she felt terrible and food was making it worse.  
 
3.  Who monitors snacks and lunch during school the school day. Currently no one.  For First and Second Grade the nurse, a para, and the daycare staff in the after school program did.  The para monitored but did not require lunch be eaten - just kept track for us.  The nurse and daycare staff required she eat/drink a Zone Bar or Breeze or whatever was the bonus calories of the day. Daycare staff did much better than the nurse at this.  I am hoping to have her home an hour earlier if I am permitted to change my work schedule.  This will hopefully allow me a chance to experiment with some of your muffin recipes, or other means of getting a super high dose of something in her right after school. Or perhaps we'll move dinner up an hour so there is more time for a bigger bedtime snack - -not sure how that extra hour at home in the evening will play out, but I am hopeful it will result in a stress-free additional Super Calorie snack.  You all have re-inspire me to try again with some of these recipes -- thank you! 
 
4.  Why two years between bone scans?  Well, I guess because the bone guy said so and neither GI nor Pediatrician has indicated that is not the proper time frame.  Bone guy had said that is how long it will take to verify the low density is an issue from infancy versus current malnutrition -- I can revisit that but I have no way of knowing if they are medically correct on that.  Marcia Herrin did not suggest that the time between scans was inappropriate, but I also did not ask that specific question.  I will ask at E's April GI appt.
 
5.  As for the psychological questions, that gets a bit tougher. Psycho-Mom wrote:  
Eds are anxiety disorders, and anxiety can manifest in many different ways, so that it's not uncommon for a person to suffer more than one type of anxiety disorder simultaneously. Co-morbids and preexisting anxiety and or depressive conditions are common for ed sufferers. Some anxiety disorders include phobias, OCD, PTSD, social anxiety disorder, and somatic illness--mental illness that causes bodily pain and suffering. Anxiety does not necessarily present as the common usage of the word, as "worry" or fretting.
In addition, there are some personality characteristics that are often associated with eds. Those often associated with restrictive eds for example (and the relationship between personality characteristics and eds is far from clear, I think) are: perfectionism, harm avoidance, detail-oriented, high achieving, rule following, people-pleasing.  So, how would you describe your d's personality and does anything re: anxiety ring a bell? 
 
*  Yes, a lot of these ring a bell.  In general she is:  detail-oriented; rule following; a professional victim; identifies as a patient (doctors are her friends); shy; I'm not sure about high achieving, and don't know what you mean by "harm avoidance" but that is intriguing -- if it means shies away from risk, she is very much that (other than her willingness to risk future health problems by not eating now). She is also a narc (can't resist pointing out someone not following a rule); stubborn; principled; and has always had a great amount of focus and long attention span - even as a very young kid.   
 
*  Here is a chronology that I think shows her anxiety-like behavior was greater when we had more doctor appts and more stress in the house surrounding eating:
 
# She and her twin went to the same daycare and were always in the same room from birth through kindergarten (the daycare had a kindergarten).  so they knew the teachers and kids very well, ate family style meals cooked on-site, and had been with the same kids most of that time.  The teachers always knew she was underweight and made sure to get her seconds and encourage her to eat -- but the report was ALWAYS that she was among the biggest eaters in her room (once on solid food).  Despite that closeness with teachers and kids, she often indicated no one plays with her, and k (twin) is her only friend.  when she did speak of friends, it was often teachers or doctors.  this was not all the time - she didn't realize it, but she also relayed stories of playing with others -- but when she was thinking about what to say about her day, she'd indicate no one played with her.  So we had her teachers watch and they told us they actually could not record a time of day she was not actively, happily, playing with another kid.  
 
#This "i have no friends" theme continued when she transitioned to public school in first grade.  again, the teachers and school counselor observed and reported that while on the shier side, E had lots of friends, was accepted, her company was sought by some nice girls, etc.  In first grade E saw little break from the number of doctor appts and in fact we increased some aspects of the drive to get more calories in her because being in public school without the family style meals was a shock to her and we saw some weight loss or stagnation that we tied to the new schedule and format.  she would go to the nurse for snacks and a para would secretly monitor what she ate at lunch - -not prod, just track and report.  also during this time frame we were solidly in the "get her to weigh more mode" as directed by her local doctors.  because she was older now and this was now impossible to do under the radar, I went to a child psychologist who does EDs and asked if there is a right or wrong way to approach this overt "eat more" directive  (with both girls in mind for different reasons).  that doctor was reassuring that these are not the types of discussions usually thought to be best in a house with kids this age but that the circumstances required it, to be matter of fact, to address it at her level (you need food to get bigger, to grow stronger, to be able to do the monkey bars like the other kids, etc), and that I would not "create" an eating disorder.  so that is what we did - went home and very overtly urged more bites when she wanted to be done, etc.  both girls had lots of questions about "why" and even some pretty good questions about how the body works, etc.  so the point is, in first grade, like kindergarten, she saw an upswing in doctors and a more overt attempt by her parents to get her to eat -- and probably sensed a greater urgency from us.  During this time she had tummy aches and felt like she was going to throw up (but never did) with most meals. She sometimes looked very ill when she'd report a tummy ache, such that it was impossible to doubt it was occurring - other times it seemed like perhaps a way to dodge more bites.  Not sure.  in hindsight I think some of these things may be signs of anxiety, but we did not think of in those terms at the time.
 
# I promise - here comes the anxiety stuff:  Then we got to Second Grade and she was in a different classroom than her sister for the first time (they were in same room in First Grade).  Same stuff - no friends, misses K, no one plays with her, etc.  In discussions, her version of "no one plays with me" it was more like "i want to play X and the other kids were playing Y and wouldn't switch to my game - but they welcomed her to play Y."  Distorted, but not sure if just normal for that age.  But a frequent and concerning refrain from her.  We were still prodding for more food, giving her Boost juice at the nurse or in class, still no way for her to not feel "different."  Then just after the Christmas, we had a few times we could not understand a word - she had always had a bit of a "lazy R" but whereas her other speech had naturally matured, her R's seemed to lag.  So we talked to school and they agreed, but because not yet 8, they would not intervene but told us we can take her somewhere privately.  So we stared taking her to speech therapy in January or Feb 2014 - did not miss school, but yet another provider and another way to feel the patient, feel a victim, feel different.  As usual, her provider was her new best friend. A very nice woman, great with kids - E loved her.  Then we got this message from the speech therapist (karen):
 
"I just wanted to send a quick email your way regarding a discussion E and I had during yesterday's session. In the middle of an activity, she suddenly blurted out, "I can't show my anger." I was a bit taken aback, but tried to gently probe a little to find out what exactly she meant. She ended up telling me that she feels mad inside a lot, but that she can't show it to anyone. I asked her if she chooses to not show it or if she is unable to show it, and she said that she's unable to. I asked her what she's mad about, and at first she said it's when she can't have ice cream, and when her sister upsets her. As the session went on, however, she talked quite a bit about the fact that she doesn't weigh enough, that she is supposed to eat more, that she has to go to doctors about her weight, etc. She just let this information come out bit by bit and I did my best to just listen and let her get it out in her own time. When she seemed to be done talking about it, I asked her if she has talked to anyone else about this and she said no. I encouraged her to talk to you both about it, but she instantly said she couldn't do that. I asked her if I could talk to her dad about it with her at the end of the session and she told me that if I did that it would make her even more mad. I told her that I appreciated her sharing this information with me and I want her to continue to feel comfortable sharing things with me, but that this information was too important to just keep to myself. I told her she could help me come up with a way to share it with you that would feel ok to her, and we ended up agreeing that she would tell her mom about it after our session, and that I would follow up with an email to make sure that happened. So, here we are! I'm not sure if this is all new information to you or if it's something you are already aware of, but I really felt like I needed to pass this along to you." (as an aside, she mastered the 32 R sounds in record time and speech therapy ended at the end of second grade).
 
Well, no, we were not aware and it was new information.  Yes it clearly shows frustration, probably anxiety, certainly matters that need to be addressed  - quickly.  But some of what was concerning about it was that it was false and that confuses me as to what it means - for instance, there has never been a time she could not have ice cream (ate brownie sundaes for breakfast for a stretch until she decided that was no longer what she wanted).  Well, at that point we made an appointment with the child psych I had previously consulted about how to properly address food issues in the home.  I gave the child psych this info and she met with E.  Went well.  E had been hesitant on our way to the appointment with a doctor she had never met and whose role I could just describe as someone E could to talk to about some things.  But after the appt she was delighted, had loved this very nice woman who took an interest in hearing her woes, etc.  Another new best friend who just happened to be an adult and a healthcare provider.  Well, the child psych reported that E had not revealed anything at all along the lines of what the speech path reported.  Of course, we set up weekly appts so she could continue to get to the root of it, etc.  Right about that time, however, is when the Omaha GI declared it was time for a feeding tube.  Then 24 hours later, that it was time to reconsider  Munroe-Meyer (feeding clinic consisting of 8 weeks in-patient and costing $56,000 and who had previously told us they are not the right place for her - but yes, they would take our money if we wanted to take her out of school and out of the home for 8 weeks), or offered a second opinion at Mayo or Denver.  (I really do feel bad for her Omaha GI - he clearly is confounded by her and I think it really scares him - but it also makes him wishy-washy and hard to read).  WELL with Omaha guy saying tube (even if he retracted it a day later) -- that re-directed the child psych's efforts a bit and she helped us a bit with the food strategies and spoke to E more about that than their other stuff (rather than anxiety, or whatever was at work with the speech path comments).  Dial up a ton more doctor appointments, more missed school, a trip out of state for still more blood draws (she hates and has a unnatural fear and aversion to, still), more lengthy tests (motility), more time sitting in a room where her parents and strange doctors talk about her weight right in front of her, the fears of her situation, etc.  Okay, so we get back from Denver and she sees child psych a few more times, but child psych continues to report great kid, well-adjusted, no ED, gladly eats for her (we'd get Dairy Queen chicken strips and shake on the way).  Child psych signs on to Denver GI's plan and agrees the anxiety of the medical stuff could be contributing to the feeding situation. So she starts to work on E's shyness and sends us home with homework designed to get E to be more confident and less shy.    One such assignment was to go to a restaurant and have E order her own meal.  Well, that is fine BUT, we don't eat out a lot because I get way more calories in her at home; she doesn't want to order the meal and it seems like one more thing her parents are telling her she needs to do (eat more when you don't want to, talk more to strangers when you don't want to, eat in a restaurant and eat food you don't prefer and without a TV).  Not to mention child psych only had during-school hours so E missed class, again looked different from the kids who didn't always miss school to go to doctors, etc.  So we stopped going to child psych.  We didn't leave AMA or anything  -- child psych knew we weren't feeling it and was given the opportunity to swing it all back to E needs this to eat better, to be happier, etc -- but she sort of agreed it was gravy to work on the stuff she was working on and certainly did not urge us to keep E in "treatment." 
 
#  Basically Summer between second and third grade is the beginning of the Denver experiment.  We have stopped prodding about food and she basically holds her own.  She goes to summer daycare back at her original daycare so has reunions with the kids that go to different elementary schools.  NO talk of not having friends.  NO talk of people not playing with her.  NO talk of the kids only like her sister.  NO talk of missing her speech path or child psych or missing all the doctor appts or if I don't go to doctors who will be my friends.  NO talk of being little.   Great summer -- little weight gain, but had strep multiple times, went on Prilosec, and is way way more active at summer daycare than at school.
 
# Gets to Third Grade (still in diff room than twin) and thrives.  Still shy.  But has not said no one plays with her, teacher reports she is a leader and has friends.  Doing well in school.  Does not go to the nurse for tummy aches during class. 
 
So….. yes, clearly we cannot say she has never shown signs of anxiety.  Clearly she has (had?) issues for her to have made those comments to the speech path.  Possibly her tummy aches are in part anxiety driven, but there seems to be evidence that gastritis/reflux were also present.  But was this anxiety the result of all the "negative" attention of daily messages (from her perspective, I fear) of you are different, you need to see more doctors, you are not enough - eat more.  I sure don't know, and I am happy to start up again with a child psych to see if anxiety remains at the root of not eating -- but I will admit a very real fear of starting up the cycle that we seem out of since we stopped all the doctors and food drama.  FWIW at her August well-child check I specifically asked her Pediatrician if he thought we should re-pursue anxiety and if so with whom and he did not think it was a good course at that point.  I do believe it is time to revisit that as an option, however, now that we have a longer history to look at post-Denver to see there is no real progress even if she is holding her own.  
 
 
If I were to pursue the anxiety issue locally, do you think her old child psych is the right way to go, or do I need a Young Kid ED expert?  I am not close to any of the ones you all have mentioned as sub-specializing in the really young.  Have any of you done such consultation entirely by phone and had success?
 
I had hoped to edit this (for typos and length) but I just saw the car pull up with the kids, so I will just have to post it as is.  Sorry for the length and I so appreciate your input!

editing to add:  I forgot her one of her most obvious anxiety behaviors is hoarding.  I have waited her out and she has finally, in the last 9 months or so, agreed to get rid of some significant amounts of toys she outgrew long ago and now when we go through her stacks of papers from school she is okay throwing out most of the stuff I would deem trash.  I don't tie this change to the Denver plan, just maturity -- but I have some family with true tv-worthy hoarding houses so I am glad to (I think) have made progress here.


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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.
galanick

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Reply with quote  #29 
My thought would be to at least have see in person by a real Ed doctor that specializes in little ones. Not sure what part of country you are in but best known are kartini on west coast and chop in Philadelphia. Duke in nc., but they specialize in selective eating, little ones, but she does not sound like selective. They do all eds so if they are close would consider. Would be afraid general therapist would miss malnutrition effects. After assessed by Ed doc and determine is ed or not then could transition to any therapist, usually cbt for anxiety or Ed is therapy used.

The reason for two years between bone scans is bones change very slowly. Even if gained bunch of weight today would not expect to see change for 1-2 years. That does not mean you should wait two years to improve nutrition, just takes a long time to see change in bones.

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atdt31_US

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Reply with quote  #30 
I am in eastern Nebraska.  Kansas City is a fairly easy trip.  So is Des Moines.  Denver or Minneapolis are doable, but considerably harder than Kansas City.  Anyone have a recommendation in those areas?  Thank you.

Tonight I was home alone with her (unexpectedly). She went to Dairy Queen with her dad and sis before sis's piano lesson.  E ate 1/2 cheeseburger and ice cream cone dipped in chocolate.  She decided not to go to sis's piano lesson so dad dropped her back off at home.  She told me what they all ate and said she is still hungry -- said she wants a quesadilla.  She participated in making a large quesadilla with cheese and ham.  She ate 3/4 of it.  Then she participated in making a shake (we have not done this in a long time) and she was excited.  She picked the ingredients and proportions:  1/2 banana; about 2/3 cup Ben and Jerry's; 1/2 cup milk or so; a bunch of Hershey syrup.  She blended it and poured it. Excitedly tasted it and declared it scrumptious.  Planned several shakes to make "next time."  Drank about 1/4 of it and declared "full."  She probably was, as she ate quite a bit between 6:10 at DQ and 7:45 when we finished up.  I tried a few times to get her to drink more then and again later -- but she was done and is now on her way to bed.  Just one example of why I don't think she restricts without some true perception of being full or more food causing pain.  But maybe I am a sucker and in denial.  Still sorting it out, that's for sure!

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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.
IrishUp

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Reply with quote  #31 
crek31 - it sounds like you have been through a lot. I am so sorry for that, it must be so hard on your girl.

We hold the position here that each member is the ultimate expert on their own situation. In that light, none of us can really say what is the best next thing for you to do. My own approach is very information based. For one thing, information is how I manage my own anxiety - along with creating one or a million contingency plans! But more than that, I earnestly believe in each parent making the best and most informed choice they can. So what follows is how I am parsing out what you have just posted. It's a "me in your shoes" kind of thing, not a "You do THIS" thing.

Eating disorders are very different in young children from how they present in older kids or adults. So a lot of times, the criteria one would use to diagnose AN or another ED in an older person, just do not apply. But the little kid does in fact have an ED. 

Anxiety, social anxiety, ritualized and/or compulsive behaviors like hoarding in response to anxiety, are all traits that are present to a high degree in people with restricting type AN in particular. They are at the same time the kinds of symptoms people (including children) who have been chronically malnourished develop. What triggers ED in little kids is often things like having experienced vomiting or other serious GI symptoms, or choking on some food. They also have magical thinking and black-and-white thinking, so well intentioned messages like "consume fats in moderation" become "DON'T EAT ANY FAT OR YOU WILL DIE!" in a kid's mind. When things are difficult and scary, and a kid has an avoidant or conflict averse personality, they will seek to increasingly distance and avoid stuff. Doubly so if they have sensory issues in the mix.

Your story presents a LOT of the risk factors that kids who develop ED often have even as VERY young children or toddles: anxiety, eating difficulties, difficulty with social interactions including bringing a kind of rigidity to them and assuming others feel more negatively than they do. You've also described a lot of the symptoms of restricting/avoidant EDs: eating some food groups but avoiding others, sitting down with apparent pleasure and then stopping as if she'd maybe done something wrong, feeling full early, feeling discomfort.

Eating disorders are very serious as you know, and they are also very treatable. The difficulty is, comparatively few doctors and therapists have appropriate, up-to-date expertise in EDs, and that is exaggerated when the patient is atypical - very young (in this case) or has other complications.

Putting this whole picture together, it suggests to me that the best place to go next, is to be evaluated by the best pediatric ED specialist or program you can access. They can help you rule an eating disorder in or out better than any of the specialists or general practitioners you have described thus far. Knowing one way or the other could be very important in figuring out what to do next.  And even if these clinicians tell you this is NOT in fact an ED, they can still help you with how to treat the under-nutrition. With that concerning bone scan, plus maybe signs that her GI does not have the motility it should (a common side effect of not being able to eat enough), well, I think the risks are growing the longer that the malnutrition goes on. It sounds like you need more help and support figuring out how best to increase her intake, and ED specialists are among the people who can do that with you. 



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IrishUp
mumto3

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Reply with quote  #32 
Can you put in a call to each of the programs that have been suggested here - sometimes you can learn a lot from the intake process, and maybe they could have some suggestions for you.

Also, does she ever finish 100% of everything, or does she always leave something behind (even a little bit)?  This was one of the things my daughter said, she had to leave a little tiny bit behind.  

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Reply with quote  #33 
Well said Irishup! I totally agree. We would all agree to jump on this NOW!
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IrishUp

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Reply with quote  #34 
Maudsley Parents has a provider list that might be a good resource. Looking quickly, there doesn't seem to be a listing for Nebraska, but there is a program in Minneapolis. They might be at least worth a call for a suggestion. There may be other programs closer to you here. My geography is HORRIBLE!

http://maudsleyparents.org/providerlist.html

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atdt31_US

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Reply with quote  #35 
Ready to jump.  Although I am unclear on how the ED specialist rules in or out an ED.  If possible I have them see E in person -- but is this like a few weeks of weekly visits talking with her that gets a diagnosis, or more like a long drive and one visit with a bunch of history from her doctors that is enough for a diagnosis of ED?  

I will call some of the centers you have mentioned and see what they can tell me.  They may also have a more local recommendation.  I guess I thought when I spoke with Marcia Herrin I was talking to the right type of professional.  Wow - my anxiety has sure risen in the week since I have decided to poke around to be sure I am comfortable with the Denver plan of watching and waiting.

And yes, she frequently eats all of what is served.  Also frequently takes seconds.  And she shuns very little out-right, with respect to what have become standard kid meals around here.  She has always gone first for the fruits, veggies -- has just always (even as a two year old) preferred them. But she does eat the pasta and protein -- it is just usually the last thing on the plate so when she is done and the plate is not empty, that is what is left.  For a time we actually stopped serving broccoli, cantaloup, and red pepper because she would fill up on those things.  For a time we "forgot" to put them out, so the kids would eat the main course and then "I'd remember" I had broccoli to put out so E would get it after the main meal -- but there are only so many times you can run that type of play without the kids catching on.  It just got so absurd to have fights about a kid wanting to eat broccoli  -- plus with K there we sort of had to make fruits and veggies part of the menu.  Also, even when she leaves part of the main course (pasta and protein usually), she wants dessert.  I'm not talking about the tiny meal meals - on those she won't even eat the dessert or fruits and veggies - she won't willingly ingest anything when she claims tummy pain at the beginning of a meal.  (again, those are currently only happening once or twice a week)

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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.
mumto3

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Reply with quote  #36 
Can you try an up the fats for awhile to get a few more calories in her?  Start the meal with buttered bread?

My daughter was diagnosed in one visit and then immediately scheduled for intake once a bed became available (4 days later I think).

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Honey_Badger

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Reply with quote  #37 
Is there any pattern or rhyme or reason to the meals where she's hungry, says this smells good, eats happily, then stops and says her tummy hurts?   That does NOT sound like a typical ED to me.   Possible allergy to some (obscure?) ingredient they all have in common?

ETA:   All these specialists you have been consulting who have said that her eating is fine -- what do they say about incidents such as happen above?   Do they think it is nothing unusual?


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Reply with quote  #38 
You can have veggies IN a casserole or IN a pasta. You can put fruits IN a smoothie or IN yogurt and granola with canola oil whipped in it. If peas are served they can have melted butter on them. My daughter used to have fruit dip with her fruit ( cream cheese, powdered sugar, lemon juice, marshmellow fluff).

Obviously you know veggies and fruits are full of fiber and low in calories and have no fat...

So how about making some new meals that are all in one? Alfredo with broccoli? Veggie bakes in creamy soup with French fried onions? Baked potatoe loaded with sour cream, butter, bacon.,,,

Lower the veggies and fruits and up carbs fats and proteins?

I made chicken pot pie tonight- full of peas carrots and onions and also chicken and creamy soups and whole milk and crust.

She may or may not have a diagnosed eating disorder... But weight gain will only happen when the anyty is upped either way.


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atdt31_US

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Reply with quote  #39 
Not sure of importance, but another thing that I think is better since the Denver plan of not prodding/focusing so much on eating is that E no longer says stuff like "are you proud of me that I ate my whole lunch."  I really never knew how to walk that line of "yes, I am very glad you ate such a good meal", and "you are not defined by your weight and eating and all this stuff you should not have to deal with."  I am planning to pursue this - I am back to terrified -- but I cannot say I am excited about the idea of eating being such a main focus of the house again.

As I was typing this and about to post after that top paragraph,  E came down (she'd been in bed about 45 minutes) and was pale, looked pathetic, said her "tummy hurt like Shopko" and wanted me to take her temperature. (Shopko was where she felt ill on President's day this year and ultimately threw up the rest of that day).  So I went up and lay with her bit and could hear gurgling that sounded high in her chest.  So I asked her to tell me what she is feeling and she said her tummy hurts like Shopko and there is stuff coming up.  Often when she describes reflux she has it stopping at about the sternum but tonight she pointed to her jaw line - said it tastes bad and it goes back down and she could not spit it up even if she wanted to, then said she doesn't want to because then she couldn't go to school tomorrow.  So . . . reflux is back.  Not sure if this would have happened no matter what tonight, or if is due to fairly big intake (husband said she almost all the burger, ate fries, and the ice cream cone … followed by almost 3/4 of an 8"quesadilla and a small bit of shake).  Curiously, the Shopko event followed brunch at a restaurant where she completely cleaned her plate of french toast, bacon, and drank orange juice.  



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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.
mamabear

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Reply with quote  #40 
Do Tums help at all? Sprite?
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atdt31_US

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Reply with quote  #41 
Tums do not help.  Never tried Sprite but I am willing to.  I've never had reflux, but I would have thought carbonation would make it worse?

You are all correct that I need to get back to E-driven meals.  I have gotten bad about failing to make each bite as rich as can be.  We do many rich, one-dish meals, but also many deconstructed casseroles because that is what the kids eat better.  We have a lot of soups with cream and veggies and meat.  But we also do lots of fruits and veggies served as sides, with a pasta/rice and meat with gravy or sauce of some sort as the main. 

What do you all do with respect to feeding your non-ED kids?  Do you make separate batches - one super-caloric and one regular?  I have fallen into the habit of trying to enrich E's individual meal by stirring in butter or adding whole milk (I know, go buy some cream - I will) to her portion so K doesn't keep eating way more fat than a non-ED kid should. I can sneak fat in the carb, but she likes bare veggies.  



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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  #42 
Quote:
Originally Posted by Honey_Badger
Is there any pattern or rhyme or reason to the meals where she's hungry, says this smells good, eats happily, then stops and says her tummy hurts?   That does NOT sound like a typical ED to me.   Possible allergy to some (obscure?) ingredient they all have in common?

ETA:   All these specialists you have been consulting who have said that her eating is fine -- what do they say about incidents such as happen above?   Do they think it is nothing unusual?




We have never found a pattern to predict when a tiny meal will happen.  The one this weekend was completely a shocker - loved what we had, had been in a great mood playing with her sister and when they sat down they were still playing (some imagination game they make up as they go along).  All was well and then after after a few bites she was done - and looked liked she felt poorly, too. She was not happy about not feeling well or not feeling like eating (it appeared).

She has five first or second degree relatives who have Celiac (occurring on both paternal and maternal sides) so we have recently revisited that with drs (only one relative is medically proven, but the other four have pretty good examples of progress without gluten and failure when they challenge with gluten).  But E's biopsy two years ago showed no celiac.  After the biopsy she has had a blood test that did show some elevated markers consistent with celiac, but not high enough for diagnosis or even to warrant another scope.  They will recheck in April I believe.  And they will definitely do that biopsy again if doing a scope again for other reasons.  

I think if she were healthy weight and had these pain issues they might let us do a gluten free challenge, but as it is there is no reason to disqualify a lot of her go-to foods when there is no medical evidence to suggest it would help.  Plus going gluten free mid-testing skews the tests for quite along time.  

Way back (three yoa) we did a blood test for allergy markers and that GI (not her main one from Childrens) said blood markers showed moderate allergy to five things - I think soy, dairy, egg, wheat, and I forget the other.  So off we went to a pediatric allergist who reviewed the same tests and said while technically positive, they were clinically insignificant and could not account for her then symptoms (FTT, rectal prolapses, frequent tummy pain).  The allergist said he would not subject her to the scratch test because there is zero possibility those foods were causing the issues.  Since then, she had a gut biopsy and it did not show eosinophils consistent with allergens being at play.  So the docs seem satisfied there is no allergy and i can't argue with it given the biopsy.  Plus, I have looked for and never seen a pattern. You are right though - I would not see it if it were some obscure coloring or additive.  Presumably the eosinophils would have given it away that something is up though. (I barely know what an eosinophil is, but before we went to Denver I read all I could about allergies to ask the right questions and it seemed like that is an objective thing that will give away an allergic reaction being experienced). And not being an allergy is one of the few things all of her current doctors agree on.  

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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  #43 
Quote:
Originally Posted by Honey_Badger

ETA:   All these specialists you have been consulting who have said that her eating is fine -- what do they say about incidents such as happen above?   Do they think it is nothing unusual?




Yes, they all think it is unusual.  Omaha guy clearly thought he would eventually figure out an organic cause.  I think he has ruled out all he can think of to rule out.  The poor guy really seems defeated by it.  When he sent us to Denver, he said something to the effect of "I just don't want you to be mad at me down the road…" and tailed off as though he thinks something dire can still come of this.  BUT he is not confident enough in that to order a tube, and Denver guy's thoughts on it sure didn't help Omaha guy to be more assertive.  I think he is scared to do too much and put her through it and he is scared to do what is currently being done and risk heart, bone, etc problems in the future.  I feel for the guy, but it is not all that helpful to my husband and me.  But if there is no clear answer, then I guess there is no clear answer.  Even her pediatrician, in August, had backed off and said she looks much better, and recounted kids he has known (but not doctored) who looked to his trained eye to be as scrawny as E and he saw that family of kids all flourish in their pre-teens and become "normal" sized -- all the while their pediatrician was watchful but did not do anything extraordinary because they stayed on their very low curve, and had no delays in terms of height, academics, etc.  

When the doctors don't agree it is hard - especially when the stakes are so high and the next step so drastic. 

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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  #44 
Quote:
Originally Posted by cuttlemom


My daughter was diagnosed in one visit and then immediately scheduled for intake once a bed became available (4 days later I think).


Wow, that is fast.  Thank you for the info.  

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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  #45 
Hi Crek - Have you tried keeping a food diary and noting unusual events alongside (Stressful day, exposure to cats, whatever is out of the ordinary)?  Just a thought.

-Torie

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Honey_Badger

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Reply with quote  #46 
Crek --    

Wow, with such family history of celiac, that seems to me to be an avenue worth pursuing a second opinion from an expert in diagnosing celiac.   We have celiac in the family as well and I investigated that as a possible reason for my son's failure to gain weight.   I have read so many accounts of people being told they or their child didn't have celiac; tests were negative several times, until finally they did test positive.   Obviously these people would be the minority of cases but some cases are very difficult to diagnose and you seem to be in that area now where "rare test results" might apply.

I can totally understand not giving gluten-free a trial, though, given your daughter's weight and the fact that these are a big portion of the foods that she eats, especially with the lack of a diagnosis.


atdt31_US

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Reply with quote  #47 
So I did not sleep last night.  High anxiety (new for me in the last two years).  I have gotten re-terrified reading on here about the quick demise of the underweight when things start to go wrong.  Obviously second guessing every decision we and her doctors have made.  Need to get over it and move forward.

When E got up this morning, she was spry. No mention of the pains of last night.  Came downstairs for breakfast.  Ate too little, but breakfast is the meal we have least success with in terms of cajoling her to eat more -- the darned clock is her best friend on a school day.  I made a shake similar to last night's in hopes she would drink it but she took only a few sips.  She did drink her Miralax (in six ounces of Kool Aid) with less prodding than usual, and ate 1/2 an egg (no yolk) and 1/2 a PBJ.  After the shake she said, pleasantly, it filled her right up and pointed to just above belly button. Said drinks always fill her up super fast.  She would not take bonus sips for me with gentle requests, other than to investigate if she had the same throat feel and sound when she drank thick stuff like the shake, or only watery stuff like the Kool Aid.  The answer is both.  But she says not with food.

A new thing with her this morning:  as she was drinking her Kool Aid (with a straw), she asked, "mommy, when you take a drink do you hear it between here and here, and indicated a 2 inch or so area just below her ear on her neck.  She said she does but only in Third Grade.  Said it is different than how it used to be like how you just hear yourself swallow.  Then she said it feels sort of like there is lump there and it pushes it back up and that's what I can hear.  But then said lump feel is on both sides, so that seems unlikely.  Not exactly like the "stuck in throat" complaints that were the esophageal candida colonization 2 years ago, but sure makes we wonder.  Of course, I will be calling this in to her Omaha GI.  When she had the fungal thing 2 years ago, she had been on numerous rounds of antibiotics for culture-confirmed strep (she was getting it about every two months for a time and on several occasions needed two rounds of antibiotics for it to clear).  Antibiotic "abuse" can result in fungal issues - but I don't think she's been on an antibiotic since October.  Another day, another "huh?"

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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  #48 
I am thinking of trying to put her Miralax in broth and adding fat.  That way she does not "fill up" on useless Kool Aid just to get that medicine in.  We have been told to not mix it with dairy, which is why it is not put in a shake.  Anyone know if Miralx is okay being heated or have other ways of getting the Miralax in besides useless liquid  - what is a high calorie/fat drink without dairy?  My hope would be she'll eat better breakfasts if she can drink less right at that time.  Of course, six ounces is not that much and she has hydration issues to begin with - so maybe this is just me spinning aimlessly after a night of worry.
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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  #49 
Given what you have stated about Celiac
Which blood test was high? Did they do the genetic test? How many biopsies were taken?
Does she crave foods with dairy and gluten ?
Is she more likely to have a problem if the meal is high both dairy and gluten ?
Did you try the hypoallergenic formulas that were dairy free when she was a baby? If so was there any improvement?
Have you done a food diary to look for patterns ?

Personal experience time i have a son who had unexplained low bone density, required supplement to raise calcium levels. Levels were low again 3 years later raised with increased supplements and vit D. Celiac tests -age 10 positive on least specific marker, age 12 negative biopsy. Age 16 positive for celiac - his only symptoms were inability to absorb calcium and headaches. If his brother was not celiac nobody would have though to look. 


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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  #50 
Quote:
Originally Posted by Tali97
Given what you have stated about Celiac
Which blood test was high? Did they do the genetic test? How many biopsies were taken?
Does she crave foods with dairy and gluten ?
Is she more likely to have a problem if the meal is high both dairy and gluten ?
Did you try the hypoallergenic formulas that were dairy free when she was a baby? If so was there any improvement?
Have you done a food diary to look for patterns ?

Personal experience time i have a son who had unexplained low bone density, required supplement to raise calcium levels. Levels were low again 3 years later raised with increased supplements and vit D. Celiac tests -age 10 positive on least specific marker, age 12 negative biopsy. Age 16 positive for celiac - his only symptoms were inability to absorb calcium and headaches. If his brother was not celiac nobody would have though to look. 



They had looked for celiac from I'm guessing two years to five years and never saw markers.  Then they did the biopsy in June 2013 and there was no evidence of celiac.  Then in August 2014 they looked again at blood and my understanding of what they told me on the phone was that one marker was slightly positive or slightly elevated and the other two markers were normal.  I think they said the slightly positive was TTGA, but I am not positive.  They had planned to check again in 4 to 6 months, so likely her December appt - but in September she saw the bone guy who wanted a bunch of labs and somehow the order for the repeat celiac was mistakenly included.  The September markers were lower than the August ones.  I don't know if they plan to re-do that in April when we go back but I will inquire.  Here is the info from the patient portal on the August blood (they did not post the September one): 
     
ComponentStandard RangeYour Value
Endomysial Ab IgA Titer <1:10
Reference range: <1:10
(NOTE)
INTERPRETIVE INFORMATION: Endomysial Antibody, IgA Titer
The endomysial antigen has been identified as the protein
cross-linking enzyme known as tissue transglutaminase.
Performed by ARUP Laboratories,
500 Chipeta Way, SLC,UT 84108 800-522-2787
http://www.aruplab.com, Jerry W. Hussong, MD, Lab. Director


Component Results

ComponentStandard RangeYour Value
DEAMIDATED GLIADEN PEPTIDE AB IGA 8


With respect to whether she shuns or craves gluten or dairy -- I would say her favorite food include one or both. Chocolate, brownies, ice cream, perogies, mac n cheese, cookies, flour tortilla quesadillas or wraps.


In response to question about formula - she was put on Neocate very early on (skipped over most of the mid-range formulas) and drank Neocate with a certain oil added (can't recall what we added) for about 15 months.  They had us start dairy and eggs and wheat and peanuts quite late - I know at her first birthday we had a "cake" made of jello and cool whip because she had not been cleared for cake or muffins, etc.  But once we were cleared, incrementally, to introduce new table foods we never seemed to have a set back in weight or increase in issues. 


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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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