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sk8r31

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Reply with quote  #51 
Hi Crek31,

Sending you warm support as you try to figure out best next steps to help your d.  You & family have been through the wringer for sure.

I just wanted to reiterate that a phone consult with an ED specialist particularly skilled with young ones may be very useful.  I know Kartini will spend time on the phone, and then send LOTS of paperwork, and both things together can help with diagnosis.  I think Rebecka Pebbles at CHOP (Children's Hospital of Philadelphia) is brilliant.

As Irish says above, you are the expert on your child, and the one to make the call on what to do next.  Trust your instincts, gather as much info as you can, and forge ahead.  We are all here to support you in whatever choices or decisions you make.

In the meanwhile, ED diagnosis or not, food is definitely medicine.  Making each meal/snack as calorically dense  as possible.  Adding benecalorie to your d's smoothies, juice or soup/stew.

My d was much older when diagnosed, but had a very rapid descent into illness.  She lost about 35 lbs in 4 months, and though never underweight for height, and with a BMI within 'normal' range, was very ill and was hospitalized for medical stability.

She also took Miralax for a time, had a great deal of difficulty with stomach aches/motility that lasted for the better part of a year.  She suffered with reflux as well, and we did a lot of GI investigating through the next couple of years.  After being WR for a year, she was diagnosed with gluten intolerance.  She says that not eating wheat has helped immeasurably with stomach pain, and overall she feels much better.  The good news is that it's pretty easy to eat gluten-free these days, and things like corn pasta are higher cal as well.  She has been WR for 3 1/2 years, so managing her food intake hasn't been affected by the gluten intolerance diagnosis.

I mention our story just as an aside...stomach difficulties/motility issues are very common with ED.  There may be some intolerance/allergy/celiac issues that arise for your d in future, especially given family history, but for now try to move forward as best you can.  Warm blankets, hot water bottles and distraction helped our d when she was having stomach aches.

We did all eat the same way at first, every family member eating everything, but soon after had to change that.  My h has high blood pressure and cholesterol, so couldn't eat the same high fat/high carb meals that d needed.  I would 'add in' to her portions prior to plating, and that helped.  D had a daily smoothie until WR, which no one else had.  

Again, sending warm support to you while you are figuring out what to do next.  I know it's very anxiety-provoking, but take a deep breath.  You are a great mom, and are doing everything you can to help your d.  We're here with you...

sk8r31

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atdt31_US

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Reply with quote  #52 
Awaiting a call back from the Childrens Colorado ED Clinic.  I also called CHOP, but that was dead end because she said they don't take kids under ten years of age.  Just an FYI on CHOP.   Editing to add that here must have been a miscommunication because apparently CHOP will see kids under ten. So disregard that part of the post.
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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  #53 
Thanks for the update on age with respect to CHOP.  Wishing you well with your phone consult with Children's Colorado ED clinic.  
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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Reply with quote  #54 
oh Crek, hang in there!   You seem like you have done a fantastic job with your daughter.  You are leaving no stone unturned in trying to get her help and have been consulting with numerous specialists!

I am sure you have done this given all the specialists you have seen but -- has she been seen by an ENT and have they done  swallow studies, like the Barium swallow test?  You say her motility was assessed as normal, has achalasia been ruled out?   I am just grasping at straws here... seems like there may be one or even two really rare conditions that might be affecting your daughter which could be making it hard to get a diagnosis....   
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Reply with quote  #55 
Just a thought on the Miralax....can you stir in a tablespoon of Canola oil?  It has no taste and adds fat calories.  Many of us here mix it into everything when refeeding. 

Hope you get some answers soon.  Your family has certainly been through the mill.  I have tremendous empathy for all you are going through.  My older non-ED d was diagnosed with a very rare GI condition when in middle school and then with celiac while in college.  She is thriving now.  Stay positive.  You are doing a great job.

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Mom of a 19 yr old. RAN diagnosed 1/2014. Residential, PHP, IOP. W/R since late summer 2014. Now in remission and thriving in her second year at university. My Faith remains.
iHateED

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Reply with quote  #56 
So sorry for all of what your poor d is experiencing.  It must be very frightening for her as well.   As for the miralax, might be better to try a cold juice, like orange juice and add a little canola oil, instead of a warm broth.   Also, have your tried probiotics at all?   And vit c?   Both are good at regulating the bowels.   It is very concerning to be on miralax for so long. 

Hang in there! 
atdt31_US

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Reply with quote  #57 
She has not been seen by an ENT although i will inquire at our next opportunity. She gets strep often and when i try to look in her throat, her tonsils seem very large, or, more accurately, I think her throat looks very narrow.  i only have her twin to look at to compare, and the docs have looked at it so many times that I have always thought it must be well within normal range.  She does not choke or have trouble getting food down (although with the fungus it felt like it did not go down).  Since we are to the point of just throwing stuff out there anyway, i plan to ask about whether her tonsils are huge, normal, or small.  I have read of kids who are FTT and suddenly have a big up-tick after removal of tonsils and adenoids.  So I will ask.  And they will look at me like a dope trying to play doctor, point out they have examined her throat a hundred times, and would have pursued it if that could be a problem and make me feel like I just asked them to take the tonsils out of a healthy eight year old.  Okay, I am tired and needed to vent on that last part.

For what I'm calling the motility test, she ate radioactive oatmeal and they took images every 15(?) minutes to see how far it got in a certain amount of time.  I think it was to confirm her stomach appropriately empties such that her feeling of fullness is not caused by a slow emptying.  Her test was normal.  I think that ruled out gastro paresis.  They only did the one hour test at the Denver guy's directive - Omaha guy would not have done the test because he saw no indicators, but if he were to have done the test for the Denver guy, Omaha guy wanted to  do the four hour test to watch it as it goes to, I think the bowel.  

When she was about 2 months old they had her swallow barium and do a scan or image to confirm her stomach was not churning backward - it was normal.  That ordeal has its own very long post to follow up, but I will spare you.

They've never mentioned achalasia, but in a quick look at it online, it does not sound like her in so much as she does not appear to have any difficulty swallowing.  I know at the feeding clinic where they watched her eat to assess stuff like that, they asked "does she always take bites that big" and it seemed important to them (in the meal they offered the offered tiny bites that were no larger than a pea).  Yes, she takes normal postage-stamp sized bites and always has.

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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  #58 
sk8r31, Thank you for your encouraging and informative post at #55. I will indeed call Katrini after I speak to Denver to see how they differ.  I had actually inquired at Katrini a year or so ago and let it go after the Denver guy convinced all she is fine.  I so hope he is right. I so fear he is overly-optimistic.  

When I contacted Marcia Herrin last week I thought it was the equivalent of talking to Katrini, but I must have jumbled up some of it from too much middle of the night reading and stress.  

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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  #59 
Thanks, Amoma!


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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  #60 
Just another quick thought as regards strep infections.  Our d also got strep numerous times, and we took her for a consult with an ENT about having her tonsils out at age 15 (a year after ED diagnosis).  At that time, the ENT doc said we should wait, and if continued infections occurred, then it would be time to reevaluate.

Fast forward 5 years..and multiple strep infections.  D had 4 strep infections this past year alone and family doc said 'it's time to have the tonsils removed'.  So, over the winter break that happened...SO much better!!!

In hindsight, she should've had those tonsils taken out much sooner....

I know another specialist consult seems the last thing you'd want to do...and I don't for a minute think it is the most important thing at the moment...but just throwing my 2 cents in that it would be a good thing to do at some point.



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IrishUp

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Reply with quote  #61 
This is a video about strategies to encourage eating compliance in a compassionate manner, that you may find helpful:


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atdt31_US

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Reply with quote  #62 
Thanks.  Weekend meal number one is under way. Made a stand-by:  brown rice (with butter while cooking); ground bison with soy sauce while it cooks; jarred gravy and this time I added 1 tbl canola oil to E's portion; broccoli with teriyaki; oranges; chocolate milk.  

She walked in the door at 5:50 eating her afternoon brownie she must not have finished during snack time (she gets snack from home and the daycare snack).  Sat down to eat dinner about 6:15.  TV was on show of kids' choice, per normal for us.  She ate the rice/meat/gravy mixture first and finished it all (and did not call me out on the canola) before attacking the broccoli, then ate the oranges without complaint even though they are not her favorite.  Her plate was basically empty by 6:28 but has yet to take a sip of milk.  Portion size was 1/2 to 3/4 cup broccoli florets (forgot the measure it); 1/2 orange; 1/2 cup rice with 1/2 cup bison and maybe 1/4 cup of the gravy/canola sauce.  

Good meal.  Does not want seconds, but will have ice cream later and maybe popcorn (probably a terrible use of space, but it is a tradition I am not up to breaking until I talk to ED specialist to see if that is what we have).  

The above meal description, in terms of volume and attitude, is pretty typical except she usually eats the veggie and fruit first and often leaves some of the main course citing fullness before it is all gone.  Then there are the "tiny meals" we are seeing creep back maybe once or twice a week right now (since ending Prilosec). 

Thank you for all your support.  I read on here all day and will do a big shopping trip to get some of your cheats I had never thought of.  

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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  #63 
Smother that popcorn in butter!
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Reply with quote  #64 
Yes, butter.  Because that meal sounds like less than 500 calories.  
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Reply with quote  #65 
Hi again,
I've been searching around for a good article for you on somatoform disorder. I found it rather difficult; I think it's possibly an illness even more poorly understood than ed. But I found this:

http://emedicine.medscape.com/article/918628-overview


The reason I know a bit about somatic illness is because I was sick with various stupid aggravating mysterious stuff for twenty years or so. It took me a long time and some SSRI's and a psychiatrist to first, understand and get past BED and then finally, when I got a terrible unexplained pain in my shoulder that lasted for a year, to say to myself: No. This just doesn't add up. I dont' think there's anything wrong with my shoulder, I think this is something else.
For me the final piece, or possibly the first piece of the puzzle, was a thing called alexithymia, an inability or difficulty to recognize, feel and/or act on emotions. Mostly the difficult "negative" ones, like anger. I got myself an anger book, and I started really being honest with myself about anger. I hadn't ever really felt anger before, because it always seemed to be to be...irrational and ungrateful. Which it often is, but hey, ya still feel it. And if it's there but you don't allow yourself to feel it, well...for me it caused a lot of darn weird symptoms. There was a lot of anger, and it took about a year of screaming in pillows and journaling and hard conversations, and....I've been well since. 

Not diagnosing, you understand. Just saying, your long, long detailed history of med appointments and symptoms looks really familiar to me. It definitely sounds like you need to consult a really good ed specialist in young children (I also think Kartini), so good for you for the bravery it takes to do that, but also while you're at it ask about somatoform disorder.

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.
atdt31_US

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Reply with quote  #66 
Thank you psychomom - I appreciate the time and effort it took to find that. I read the article and will add it to the list of things to consider with whatever doctor we address "the next step" with.  I have called Katrini and can talk to Dr. O'Toole in a week or so.  That is good- it will give me a week to try to re-double my efforts at enhancing the fat and calories in E's diet to see what kind of increase we can get under the radar -- I really am conflicted about going back to overtly telling her to eat more.  

There is so much data (in terms of her medical/psych life history) and I am so unqualified to draw the ultimate conclusions.  I feel like whatever the saying is about statistics --- you can make them say anything.  When I read on this forum, I can say she fits ED (sometimes).  When I read hear of lengthy in-patient stays and life-threatening medical effects of starvation, I get terrified and see every physical complaint by her as a dire warning of the beginning of a big decline.  When I read that article, I can say she fits somatic.  When I read the Denver guy's assessment, I can say she's fine as evidenced by blood work and smooth height curve and brain development under these same "starvation" conditions.  When she is chipper and eats full plates and asks for seconds and plays with the other kids I think I am failing her by continuing to look for answers.  When I start to get records and do chronologies to introduce a new provider to her history both physical and mental, I think I have failed her by letting all of this go on so long without clarity on what has caused or can fix the situation.

Here is a question I hope you all don't find offensive.  Obviously I don't wish for an ED diagnosis.  But I would rather have it now than in "x" years or following a medical event IF there is an ED at play.  But, I somewhat feel/fear that by spearheading the effort by seeking out an Ed specialist (of my own accord, not even at the suggestion of any of her many doctors) that I am signing up for the ED diagnosis.  Not well worded -- I guess I want to know that the ED specialist does not see ED "everywhere".  Still poorly worded -- I'd like to know that the ED specialists are willing to say "no, it is not an ED -- there is anxiety is at play, and maybe if left untreated it may very well become an ED, but for now your kid should [do the Denver plan] of eating til full, you parents need to be way more vigilant (behind the scenes) of enhancing her bites to be as caloric as possible, and she needs to see a regular child psych to deal with anxiety, and continue to stay in close contact with her PCP to monitor growth and address physical ailments/complaints as necessary."  

I completely get that EDs are under diagnosed and missed by great doctors who just don't know what to look for, etc.  I would like to know if there is any risk of the converse -- that an ED specialist over-diagnosis ED. 

Thoughts?





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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  #67 
Also, I am going to take a page out of YP's playbook and change my username to one I think neither kid is likely to google in the future.  If any of you referred to my prior name, and you would be so kind, can you edit to the new name (atdt31).  Thanks.
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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  #68 
atdt31, glad my "playbook" was helpful! [smile]
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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  #69 
Quote:
Originally Posted by IrishUp
This is a video about strategies to encourage eating compliance in a compassionate manner, that you may find helpful:



Thanks IrishUp.  I watched that a few days ago while wandering around this site. It is indeed very on-point.  Wish I had seen it four years ago when the kids started asking about all the emphasis on how much E eats.  We of course tried to explain it, but as they age they ask better questions it gets less and less casual and natural and truly is such an overriding emphasis in the house.  Under the Denver Plan it has gotten better, but it is hard to un-ring a bell that was ringing non-stop for 7+ years.  

And the truth is, I am so logic-driven that I almost need a video logically explaining why I should follow the suggestion on the video to leave logic at the door when getting a kid to eat more.  She certainly comes by her desire for logical answers honestly!

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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  #70 
I've been watching this thread with interest and have wanted to post but haven't quite figured out what to say.  Your D sounds like my D in so many ways. 

First of all, I admire your diligence and persistence in looking for an answer to your daughter's issues.  It's frustrating and exhausting and it seems as though you have -- and continue to -- turn over every stone looking for information.  You should feel really, really good about that.

I get the conflicting feelings -- so, so much.  My daughter is now 14 and has pretty textbook restrictive anorexia nervosa.  She was born, full term, at 5 pounds, 14 ounces.  She never, ever liked eating, even as a tiny baby.  She has been super picky all of her life, and had I pursued it, would probably have been diagnosed with some type of selective eating issue/ARFID.  She's had constipation issues since birth. BUT..........

She always followed her growth curve, for the most part, with a few blips.  She was consistently in the 3rd percentile for weight and 10th for height.  

We started her on a stimulant medication for ADD when she was 8, and shortly thereafter switched doctors.  Within 4 months, D had lost 10% of her body weight, and the new doctor was alarmed.  We immediately stopped the medication, and began about 18 months of extensive medical detective work to make sure there was no medical reason for her drop in weight.  We did genetic testing looking for something like Turner's Syndrome, we did vials and vials and vials of blood work.  Hormone levels were fine.  We did a bone age study -- she was found to be about 3 years behind.  We did extensive family history, looking at puberty dates for parents, grandparents and first cousins.  The pediatric endocrinologist who followed us essentially said:  She's fine.  She's always going to be small, and will be a late bloomer.  But there is nothing wrong with her.

I see the AN as a very separate issue from her smallness and picky eating, but they were definitely factors.  As you know, ED sufferers often don't see that they have a problem.  My daughter uses all of this "ammunition" to support the fact that "she's fine."  She's actively pushing not to be weight restored past the 3rd percentile because she's always been there.  (Sorry sister, not going to happen.)  The fact that she was always very thin made aggressive treatment at the beginning even more important -- she had NO weight cushion to play around with.  I see some girls lose 20-30 pounds before diagnosis.  My daughter lost 5 pounds and we were in crisis and had to get up to speed FAST.

I'm telling my story because I've learned so much by reading the stories of others.  You are on top of this and I know that you will continue pushing to get answers.  I encourage you to keep going -- I wish I had pushed harder, even though I honestly feel like I did what I could do. I didn't know half of what you know when I was dealing with this years ago. 

Please know that we are here to be your support and your sounding board.  I will continue to follow this and wish you and your sweet girl the very, very best along the way.





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Mom of 15 year old daughter, RAN diagnosed Nov., 2014.  WR June, 2014.
Tali97

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Reply with quote  #71 
Yes ED docs do find reasons other than eating disorders for a child's struggle with acquiring enough nutrition. I found that with my son the focus was on weight gain and reasons for his low weight were secondary. He had fallen off the bottom of the weight curve. 
His eating disorder is ARFID, but the ED doc has spent a lot of time talking to him to find out why he does not want to eat. He was recently diagnosed with gastroparsis by this doc, it is the diagnosis that was missed by the GI docs that he saw when he was 8. The question we have is would he have developed the eating disorder if we had not followed the advice of the psych who advised us to let him eat what he wanted and stop forcing him to eat. 

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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  #72 
Terrible day for calories.  Decent breakfast.  Small lunch.  Small snack.  Very stubborn and did not take more bites with gentle suggestions.  Can tell when "no" means "no" with her.  She saw a photo of her dinner on my phone last night (doing a food log for Omaha GI right now) and accusatorially said "why did you take a picture of my plate?"  I ignored it and kept talking to her sister - but seems like she can sense my change in comfort even though I have tried be casual about my renewed effort to sneak in calories.  

Now she's off to a sleep-over she has been excited about for over a week.  Called that mom (who I know well and has known E her whole life) and told her push the ice cream and cookies and not the grapes (her d is "overweight" and they steer her toward the exact opposite food we want for E).  Told her to push fluids because I don't think she drank enough today.  We are having Spring weather for the first time in months of very cold and very snowy.  All the neighborhood kids were out in shorts and played in the yard all day -- so good to see E out there, having energy and playing with all the "normal" kids -- but harder to up the intake on days like this.  Tomorrow is another day to try, try, try again.  [smile]

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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  #73 
You said "You can tell when "no means no" with her…..

If I would not have required my D to eat what she was given- she would have been dead long ago by now. Sorry if I sound rude or crass- not intending to be….but here is the thing...

If you indeed decide to push to get her weight up- you are GOING to have major resistance. It is par for the course. Even if she does not get an "ed diagnosis"- most likely her weight will need to be increased anyway. Every single person on here has dealt with resistance. 

You may just have to push through this and no- it is not easy or fun. I had plates thrown at my head, food spit at me…you name it. She got up from the table a million times and we followed her around with food and ensure and no matter what or how long it took- the food was required to go in .I set alarms for 5am and spoon fed her while she was half asleep. I went to school twice a day. And sleep overs would not happen if the food did not go in ahead of time- that was a consequence. "LSUYE" means life STOPS until you eat. It means that playdates and activities and school and everything else did NOT happen until the food was eaten. It is the hardest thing that we have ever had to do but sooner or later they accept that you will NOT give up and the battling gets tiresome. 

Just my 2 cents. I hope that you can get guidance from Kartini or whomever you talk to….





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Persistent, consistent vigilance!
atdt31_US

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Reply with quote  #74 
Yeah, I get that (on some level), mamabear.  And I don't envy, and hope I don't have to join, you guys in this type of battle.  I fear I will.  But at least as of today, the most recent input from her doctors is that the stress surrounding us pushing her about eating (for her whole life) is contributing to the lack of eating.  As recently as a week or so ago, Denver guy was given her stats and knew she went down to 45.2 after throwing up for a day and that it took her a long time to get back up to even 47.  He said, she's fine.  No worries, her velocity is appropriate from last May when he saw her to now.  I am scared as can be that he is wrong.  But he has all the data, all the test results, and the medical training.  So for now, until I get a different answer from someone else with medical training, I am going to play his game.  

I took the day off work yesterday (without pay due to bajillions of doctor appts and sick days for her) to call her Omaha GI and report to them, and wait for a return call; called Katrini; called Denver ED Clinic (no response from them); and have spent about ten hours today drafting a chronology for Katrini, and I'm still not done.  Her Omaha GI wants a food log and to talk next week.  In the meantime, I am trying to soak in as many of your tips for upping the calories so that the ones she eats, willingly, are highly efficient. I clearly got bad about that.  I do thank you for your input, and you may very well be correct that I need to "go there" with her in the near future.  But I can't right now. 



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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  #75 
Hi ATDT31 - I can understand your concern about having your d wrongly diagnosed as having an eating disorder.  I don't think that is at all likely with the world-class ED experts you are contacting, but I would encourage you to share that concern with them so that they have a chance to reassure you.  They should certainly be able to understand why you would want such reassurance.

And please don't think you have failed your d. It's not your fault that all these docs and all these tests haven't been able to give you real answers!  And besides, it doesn't help your d one bit to beat yourself up; actually it does her a disservice because when you are thinking that way, it undermines your ability to do your best right now

Your love and devotion come through loud and clear.  Your d is lucky to have you.

xx

-Torie

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