User’s Guide | Rules | Contact a Moderator | Registration or Login Problems? | Eating Disorders Learning Center | F.E.A.S.T.



Custom Search of F.E.A.S.T. and Forum Content:
Register Latest Topics
 
 
 


Reply
  Author   Comment   Page 1 of 13      1   2   3   4   Next   »
atdt31_US

Caregiver
Registered:
Posts: 387
Reply with quote  #1 
Hi All:
I've read around her for a year or so and there is some great info. I have read a lot of the topics with young kids and the approaches, etc, when the young kid has an ED. Although neither I nor her doctors believe my daughter has an ED, we all agree she does not ingest enough calories to fully thrive. This has been true for her entire life. Yes, since birth. Briefly:
a. she had MSPI and GERD both diagnosed within the first month or so of life. Took Prilosec for untl about 15 months, as I recall. Took forever to eat a bottle and exerted control over feeding before she was even six months of age. By this I mean she would shake her mouth to get hte bottle nipple out and would make gagging sounds when we gently attempted to get her to re-latch to finish the bottle. If we persisted more than two or three times, she would "vomit" everything she just ate, and then be happy to giggle and cuddle. When she started daycare at about 4 months old, they reported she only cried when she was fed - as opposed to the other babies who generally cried when the bottle was empty.
b. She has been at hte "less than first percentile" for BMI nearly her whole life -- for a very brief period when she was 3 yoa she hit hte 3% mark. Since about the age of 5, her BMI has pretty steadily been in the mid 12s. Her current stats are: 8 years 11 months old; 52.25 inches; 47.5 pounds. That is roughly 50% on height, I think 5% or so on weight (no one ever mentions that one) and aa BMI of 12.2 with a z-score of -3.21.
c. Last Summer she had a DEXA Scan which showed osteopoenia in one site and osteoporosis in the other (can't recall which was hip and which was spine). She was sent to a bone specialist at Children's and they said they expect that when they re-do the DEXA in two years it will be trending in a good direcion -- he believed her low bone density was a remnant of poor nutritional intake in the first year of life rather than on-going malnutrition.
d. She takes Miralax daily (full cap) and has since she ws 2.5 yoa. We have had zero success weaning her from this.
e. Because her height curve has stayed relatively smooth for her whole life, and because she has always met every developmental milestone, her doctors are content to monitor her progress and have not required a feeding tube. They have been close - at one point her Pedicatrician said it is time, but the GI at Children's disagreed. Then about a year later the GI said it is time (last Spring) but quickly reversed that advice and instead sent us to an out-of-state Children's GI in Denver for a second opinion. The Denver GI basically said to quit bugging the kid to eat -- that by doing so we are setting her up for disordered eating, if not an ED, and that she needs to self-regulate and be a kid without pressure surrounding weight and eating -- he sort of said if we back off she'll either hold her own or "fail spectacularly" at which time we will know we need a Tube.
f. She has had tons of tests and they've ruled out organic causes.
g. Most of the time I am content to go along with the idea that she is just small (the "someone's got to be in the First Percentile" mentality). She does not appear to conciously restrict her eating. She comes to the table on the first call, eats well and happily, gets excited about desserts and her favoirite meals, etc. She just stops eating too soon, usually citing a tummy ache or it feels like she is going to throw up. Since these feelings have plagued her her whole life, and were born out within the last 2 years with an upper endoscopy showing gastritis, it is hard to not believe her that she legitimatley is perceiving a physical cue from her body to stop eating, as opposed to choosing to stop to avoid gaining weight.
i. On rare occasion, for about the last 2+ years, she will make a comment about wanting to stay small or liking being small. Sometimes it is clear she means "young" not small - like she'll follow up with a reference to wanting to move out of our house. Other times she means small - and may follow up with something implying small is cute, or she can hide better in hide-n-seek. Like many of you have reported, she gets picked up by the bigger kids at school and she seems to have a ove-hate relationship with that activity -- sometimes she likes being littel and treated like the cute baby and sometimes she resents that they play with her differently than they do her fraternal twin/best friend (83% BMI).
j. Last month, she got a stomach bug or something and threw up for a day. She lost about 2.5 pounds, and dipped into the 11's for BMI. She has very slowly regained to that pre-illness weight. These are the times when she does not appear "normal but small to me" -- she appears fragile, vulnerabl, pathetic, and in need of someone to take control and force her body to gain weight.

So -- when I read on here about the young kids who say things like they don't want to get fat and restrict their eating to ingest fewer desserts, I "get" that that kid is showing signs of an ED. And if I had signs like that, or if a doctor said she had an ED, I believe this forum is exaclty the place to be to show how to re-feed. In this case however, how do you know if you should be "re-feeding" or just ensuring a consistent intake of food that allows her to stay on her own curve.

My two biggest fears are:
1. Not doing something to more actively and quickly cause her to gain weight so as to reach at least the 3rd or 5th or some "healthier" BMI percentile and having that failure to act result in life-long problems relating to bones or other areas of concern in the chronically underweight.
2. Shoving food down her throat (either by Maudsley or a feeding tube, either of which would create drama we don't have now and, at least in the case of the tube, subject her to some risks of complications) IF she really is just a small but healthy kid. Remember, her height curve is fairly smooth at about 50%, she is socially thriving; thrives in school (differentiated programs); loves food and does not resist the idea of food or eating and eats with actual gusto . . . until she is done. She seems to take in jut enough to stay on her arc, but at this rate, we will never see any climb in terms of BMI percentaile bcause, the older she gets, it seems like the more bonus calories we need to get in her to make an appreciable difference in the rate of gain.

Her local doctors just seem on the fence about whether she requires intervention or whether she is fine as long as she does not lose ground. Your input is welcome.

Finally, thank you to all of you who have found the time to share your experiences -- it is so appreciated by us newbies and I admire your energy and willingness to take the time to share yoru wisdom!



__________________
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, I believe, based solely on weight being less than 75% of Ideal Body Weight (not sure if he also considered low bone density to be a significant nutritional deficiency - not positive he knew her bmd).
Charbonie

Caregiver
Registered:
Posts: 325
Reply with quote  #2 
I'm not a doctor and can't offer medical advice, but, you say she stops eating too soon. If she doesn't show any avoidance toward food, why do you not insist that she not 'stop too soon,' and finish her plate? Then what happens? 

Perhaps you can get a referral to a top eating disorder clinic (Kartini?) and have them do an assessment. Most gps and even nutritional specialists have no clue around diagnosing an eating disorder and all the different ways it can present.

In my opinion she does not seem to be at a healthy weight and should be made to ingest more nutrition. Not sure why that isn't happening. Is is just because she puts up a fuss if you ask her too? I think we are missing some information. 

__________________

Best wishes,
Charbonie
------------------
18 yr old d Dx Mar 25/14. WR June 2014. FBT/EFFT, Individual Therapy. In Phase III, eating intuitively, letting her plan ahead on her own re her nutritional needs for the day and how they fit into her schedule. Teaching her how to cook more for herself. Still watchful. Thankful every single day.

mumto3

Caregiver
Registered:
Posts: 446
Reply with quote  #3 
Can you feed her more often, so she doesn't get to that "done" state?  Three meals, three snacks, especially one before bedtime.

Have you tried upping her fat intake?  Swap out whole fat yogurt for regular yogurt?  Offer her smoothies made with Heavy Whipping Cream?  More milk products?

__________________
worried mom
Charbonie

Caregiver
Registered:
Posts: 325
Reply with quote  #4 
And by the way, I forgot to mention that kids of this age often do not exhibit the typical symptoms of an ED such as a fear of getting fat or gaining weight.

And I also wanted to say, don't trust GI experts to diagnose an ED. It would not surprise me in the least if they knew very little about them or how they present in young children. They are not ED experts.

__________________

Best wishes,
Charbonie
------------------
18 yr old d Dx Mar 25/14. WR June 2014. FBT/EFFT, Individual Therapy. In Phase III, eating intuitively, letting her plan ahead on her own re her nutritional needs for the day and how they fit into her schedule. Teaching her how to cook more for herself. Still watchful. Thankful every single day.

justeat

Caregiver
Registered:
Posts: 33
Reply with quote  #5 
I agree with Charbonie; getting an opinion from an eating disorder clinic is a good idea. My daughter was treated at Kartini, they deal with younger children as well as adolescents, and they will do a consultation without needing a referral. It would be worth looking on their website also; they have a lot of useful information there. Good luck, you're doing the right thing by checking this out!
BostwickLakeGirl

Caregiver
Registered:
Posts: 5
Reply with quote  #6 
I am sorry to hear about all your concerns.

My first thought about your daughter is not to get hung up with her BMI or growth chart.  I seems to me (I am not a doctor) that her low zone may be "her zone."  Do not compare her to your other child. He has his own zone too.  When we talk about our ED children on this site they have had an established zone that has drasticly changed.

Pediatrician are wonderful people for treating many illnesses but some are not informed enough to treat complicated issues like asthma, ED, cancer, etc.  Search out another specialist for your daughter.  Some of them may not be located in your town.  I love our pediatrician but unfortunately he did not see our s having an eating disorder, in fact, he turned his should to what the charts were telling him.  It was a specialist that immediately saw the problem. Be persistent in your course for answers like you are on this website or look to other sites as well.  
galanick

Caregiver
Registered:
Posts: 491
Reply with quote  #7 
I would say if at her very young age has osteoporosis something needs to be done. You don't want her breaking bones like an 80 year old as a teen. I have two with very young onset of symptoms at 15 months I new oldest had issue with food, and before two with youngest. Also, my middle girl had food allergies at one. Oldest and youngest both had severe reflux all there lives. Both have been diagnosed with sensory problems. Can not tolerate certain textures of food, also they find most clothing itchy. Has d been assess by OT for eating.

To rule out Ed and maybe and if not ed to find next direction to look at I would recommend. Kartini, children hospital of Philadelphia ( dr peeples) or Duke. These are the experts at the little ones in us. Some of the things you say do sound Ed ish. Ed is young tend to have a lot of tummy aches, fear of getting bigger/growing rather than getting fat. But onset so so young makes you wonder if some rare medical problem.

Hope you can find some answers sounds like she has been underweight her whole life. Hugs

__________________
eeyore
atdt31_US

Caregiver
Registered:
Posts: 387
Reply with quote  #8 
Hi cuttlemom - thanks for the response. She eats breakfast at home and we have to prod her nearly every day to drink her Miralax at that meal. She eats lunch at school (she picks cold from home or hot from school). Then a snack at after school "daycare" which is at the school. Prior to seeing the Denver GI we sent a Zone Bar with her that she was required to eat at that afternoon snack time but it required supervision and prodding to get it all in her so the Denver GI said to stop such fights about food. So now she eats whatever healthy snack daycare provides and sometimes a brownie or other snack junk from home she can carry in her bag (she chooses whether to eat it depending on if she is hungry enough or not - no prodding or supervision anymore). She eats dinner at home and then a bedtime snack that is usually ice cream or pudding. On weekends we do try for three meals and three snacks although it is usually three meals and 2 snacks that we achieve (mostly due to a later than normal breakfast since the kids are finally "sleeping in" a little).

For a very long time I did things like make the pudding with cream, or serve Hagen Daz, etc - but she prefers the pre-made (lower calorie/fat) puddings and regular as opposed to premium ice cream. So when we can up the fat and calories without stress, prodding, or threats of punishment, we do so. But for the last six months or so we have been following the advice of the Denver doctor to see what happens if we let her eat as she chooses -- to see if she loses ground, gains ground, or holds her own. She seems to be holding her own (barely) other than when ill and for a few weeks thereafter. But at this rate she will never see the First Percentile on BMI.

Part of why I finally posted was to see what you all thought about the strategy to continue letting it "declare itself" versus going back to addressing her level of consumption at every meal and prodding to get more bites or milk in her. I both question and crave the doctor's advice that she is fine as long as she stays where she is and that there is only a problem we need to address if she starts to lose ground. We do call in monthly weights and she is seen by her Children's GI about every four months - so we have a short leash and feel like they are not "poo-pooing" her situation, it is just hard to see doctors with somewhat different approaches, and at times indicate this is dire and at other times take a wait and see approach.

__________________
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, I believe, based solely on weight being less than 75% of Ideal Body Weight (not sure if he also considered low bone density to be a significant nutritional deficiency - not positive he knew her bmd).
atdt31_US

Caregiver
Registered:
Posts: 387
Reply with quote  #9 
Wow, you guys are fast. - I was typing in my first response and before I got it done a bunch more replies came in -- thank you! Yes, I can fill in some gaps -- I will post again when I can do so from home -- I am on my phone and at work, so will have to get back to this in a few hours. Thanks again and it feels good to roundtable this a bit with those of you who know much more about it. Thanks again!
__________________
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, I believe, based solely on weight being less than 75% of Ideal Body Weight (not sure if he also considered low bone density to be a significant nutritional deficiency - not positive he knew her bmd).
mumto3

Caregiver
Registered:
Posts: 446
Reply with quote  #10 
Miralax side effects include nausea, abdominal cramping and gas...  

Will she not eat the premium ice cream if there is no lower fat version available in the house?  The brand Chug has a milk "shake" drink that packs a lot of fat (440 calories) - it's consistency is like chocolate milk (or vanilla).  Try to find higher fat versions of pre-made snacks.  

Does she like muffins?  Check out this thread for some delicious recipes http://www.aroundthedinnertable.org/post/high-calorie-suggestions-696425?&trail=500#gsc.tab=0

What does the doctor say about her needing Miralax daily?

__________________
worried mom
YogurtParfait_US

Avatar / Picture

Caregiver
Registered:
Posts: 6,264
Reply with quote  #11 
It seems to me that, whatever the cause, your daughter is suffering from malnutrition.

My question: How can that be remedied? What professionals are best equipped to help to make that happen?

Hmmmm ... it does seem to me that Kartini Clinic might be a good place to call for a consultation. Dr. O'Toole does look over health records and do phone consults, and she has expertise in feeding issues with young children that persist. I have no personal experience with Kartini in my own daughter's treatment, so this isn't a recommendation, rather a thought about what I might consider as a parent in your shoes, to investigate possibilities for treatment appropriate for a kid who has life-long feeding/nutrition/gastric issues.

Welcome to ATDT!

__________________
"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)
IrishUp

Avatar / Picture

Registered:
Posts: 2,020
Reply with quote  #12 
Welcome, crek31.

As others have noted, we are a support group on the internet, and we cannot diagnose here, nor can we take the place of proper medical care on the ground.

But I am hearing your concern, and I think you are quite right to be worried. The story you present - that you and her doctor are worried that she is not taking in enough food, that she has had an abnormal DEXA scan, that she appears frail to you, that she has had long-standing histories of difficult feeding and absorption - all suggest that this needs expert management and evaluation. I would second the advice for a comprehensive evaluation by an experienced eating disorder team. For one thing, the vast majority of even excellent physicians have not specialized in nutrition, growth and development. This kind of expertise is not part of most medical specialties, and as a result, many physicians from other disciplines underestimate the severity of the malnutrition they are looking at. The other thing is that ED specialists understand strategies for increasing caloric intake, even in the setting of complications such as gastritis.

The reason to move sooner rather than later is this: failure to thrive or malnutrition for any reason, has life-long consequences if not corrected. And the severity of those consequences is directly linked to how long it goes on, as well as how large the nutritional deficit is.  New bone formation is severely hampered without enough nutrition, so it will be important to do as much as you can to correct the deficit in order to reverse what has been noted. Treating early and aggressively (meaning taking full nutrition seriously and doing everything possible to maximize nutrition) is the best way to ensure your dear d achieves her full growth and developmental potential. There are a LOT of risks being incurred with waiting, and virtually NO downside to acting as soon as you can.

You are right - learning how to maximize eating when there is a long-standing difficulty DOES take support; support from experts, and support from friends, family and peers. You and your family deserve and need this support. My experience has been that the extra effort and resources that are often required to get an evaluation from the best, most expert clinicians you have access to, is generally completely worth it when the problem you are facing is complex and atypical or rare. The members here have a different kind of expertise, and we can help with ideas and suggestions that come from having navigated similar problems.

__________________
IrishUp
Sadmom

Caregiver
Registered:
Posts: 234
Reply with quote  #13 
There would not be percentiles if someone wasn't in the 1st and others in the 99th. Not everyone is average in height or weight, because that is the nature of a bell curve.  So there will be smaller children and larger ones, and no one can determine whether anyone's particular small child has a predisposition for an ED. 

I will say now, with my wonderful 20/20 hindsight, that my own D was a picky, finicky eater all her life. She was also always very petite, never above the 25% in weight, and didn't even get a first period until she was 15. When she descended into life threatening RAN last fall, we didn't see it coming...and felt totally blindsided.

Now, I look back and see all the signs. She had body image issues from the time she was a pre-teen. She was a fussy eater. She had anxiety and perfectionism.  She was very small and light (a perfect little gymnast package, selected for the elite team when she was only four). It just never occurred to me that these were signs and signals of a child who could develop an eating disorder.

So, I would definitely pursue more information, Crek31, for your own peace of mind and to hopefully offshoot anything coming down the pike. It certainly is easier to refeed a young one and set them on a path of health at your D's age.  

Good luck. You have lots of support here.

__________________
Sadmom
Trytrytry

Caregiver
Registered:
Posts: 477
Reply with quote  #14 
Just a thought - just hypothetically if she is the 'someone has to be the one percentile' and even the DEXA as you are aware is also a comparison to other people's bone density, it's a diagnosis based on being so many standard deviations below the norm and someone also has to be in the 1%.

I would go with the thought of would it hurt if she gained some weight? Even if she has no 'problem', at least it would be a buffer for when she gets unwell.

And you don't want constant fights, you have had tests and no organic problems (except why the gastritis)

Why not add so benecalorie or oil or other calories hidden in her normal food for the meals you supervise. I'm sure you have read about that around here somewhere. That way she will gain some weight hopefully, and there won't be the daily fights of forced more food and you can see what happens. The drs probably say don't hide things or be deceitful etc but you aren't, you are being a parent.


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

Avatar / Picture

Caregiver
Registered:
Posts: 4,894
Reply with quote  #15 
Hi crek31 - So sorry your d is giving you cause for concern.  It is awful to suspect there is a problem but to be unsure whether there actually is a problem and if so, what exactly the problem is. Ugh.  These are not the kind of puzzles any of us thought we were signing up for.  And they are not the kind that are easily resolved with the kind of medical advice and support that is readily available to most of us.  So I have loads of sympathy for you in trying to sort this all out.

To IrishUp's excellent post, I would only add this: It is true that someone needs to be the lightest 1%; but I don't think it is necessarily true that anyone healthy needs to be in that lightest group.  I strongly suspect most in the lowest percentiles are actually unhealthy.

Sorry if that is harsh; I don't mean to add to your anxiety.  I most certainly wish you and  your d all the best and hope you will let keep us posted about your journey.

-Torie

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

Registered:
Posts: 5,588
Reply with quote  #16 
I do not understand why noone is recommending that you beef up the fats and calorie level of her diet. It seems so logical. If she gets full fast or whatever the case, why not increase it all? What is the harm in that?

I have to be honest that I find this quite puzzling.... Why not intervene? It sounds like this " let's wait and see" and " we may then talk about a feeding tube" Instead of " let's see if we can get weight up and tackle behaviors " doesn't make sense to me.

I would insist on 3 meals and 3 snacks and supervise. Remember that food is medicine. Some do need more than others but this does not sound like something to wait on. I would really consider having her evaluated and starting magic plate.

__________________
Persistent, consistent vigilance!
atdt31_US

Caregiver
Registered:
Posts: 387
Reply with quote  #17 
You have all offered some excellent points to ponder as we continue trying to find ways to get weight on E without actually causing more problems.  Ultimately, I think I am coming to the realization that I need to try to change things up in as seamless a way as possible from E's perspective. I think I will finally implement a work schedule change I have contemplated for a few years - I don't know that I will have success but at least I won't have that "what if" hanging out there.  I can likely change my work so that I get home about an hour earlier, which will give me another hour to play with before bed -- I am hopeful that will allow enough time between dinner and bedtime snack to allow E to get hungry enough to eat more calories at bedtime.  I will try to address it with my boss in the next week or so and see if I can swing it.

To fill in some gaps:

1.  Without boring you with all the details, E has been tested and tested and no organic cause has been identified for her sustained low weight (as compared to height).  At one point after very extensive metabolic testing, that specialist said there is nothing there that can be identified as of 2012 -- but new metabolic diseases are being discovered every year and possibly she will eventually prove to "have something."  However, he saw nothing about her other than her actual weight to lead him to think that is at all likely.  Motility/emptying has checked out normal; biopsy for celiac was negative; no allergy markers; no cystic fibrosis, etc.  

2. After years of head scratching, the Omaha GI sent us to the Munroe-Meyer Pediatric Feeding Disorder Clinic.  They had something like six specialists ranging all watch E eat (they watched through a one-way mirror - or is it two-way?) as she ate food I had prepared and then did a round where they had us feed her their food.  I took all food groups, all temperatures, all textures and she ate it all.  They spoke to us at length, they watched how she ate, what she ate, how we interacted, etc.  This was an all day event.  At the end of it, they basically asked why we had been referred there, called the GI, and told him there is nothing behavioral about it and he needs to find an organic cause.  So after more testing, including upper and lower endoscopies, we were again told there is no reason anyone can find for why she does not choose to eat more.  

3.  They have made some "interesting" finds along the way, but the doctors believe they were incidental findings that did not explain her lifetime of poor eating/growing.  (a fungal infection in her esophagus that explained why she said it felt like there was food stuck; gastritis that explained her tummy pain and went away appropriately with Prilosec; "stuff coming up" that was her explanation of reflux and which subsided with Prilosec).  They also think the constipation is unrelated to any cause of the low weight (but it recently came to my attention that low weight may contribute to constipation - I will pursue that at E's April GI appt).  With respect to the Miralax, she went on it in 2008 at about 2.5 yoa because in a two month time period while she was potty training, she had nine rectal prolapses. Since August of 2008 she has not had any recurrence of that problem, but we have not had any success in even small decreases in the Miralax.  She had a colonoscopy and none of the usual reasons for prolapses was found and at this point they discount them as red-herrings and they are non-factors in her care.  FWIW her sister and I also require help to stay regular, so the doctors have chalked the constipation up to "familial."  

4.  We've worked with nutritionists who confirm that she eats a great diet in terms of the nutrients being offered and even eaten - she does eat enough to gain, just not enough to catch up.  We had E visit with a pediatric psychologist who supposedly specializes in eating disorders and that person, after meeting E ten or so times and after extensive history both from the parents and Pediatrician, concluded she thought E must have something organic because it did not fit with an ED.  Since that time we have done even more tests and I am at this point confident no underlying organic disease is causing her to eat less.  Whether eating less has caused some problems, however, remains to be seen.  [frown]  

5.  For over 8 years we urged her to eat more at every single opportunity.  We added oil to her formula as a baby to up the calories.  We added butter and oil and whole milk and cream and cheese and peanut butter and nutella to everything we could so that when she took a bite it was as efficient as possible.  Then as she grew older and asserted more independence we started more overtly urging her to eat more -- but rather than do it to please us, or earn TV with the meal, she would want to discuss it as she got older.  So we tried to explain food makes you grow, etc -  --- and simultaneously tried to find ways to explain to her twin sister that no, she could not have seconds on ice cream even though E could.  In hindsight, I'm sure we navigated some of that poorly.  At the time I did my best, and had no real guidance other than "get more calories in her or she will suffer."  We did not yell, we did not punish, we did not threaten, we always ate at the table as a family (yes, the TV was on), and we dropped out of some extracurriculars to dedicate more time for "relaxed" dinners that were designed to make it easier for her to choose to eat more.  We lost a ton of work and school days at doctor appointments and the older she got the more obvious it was to her that she was "different" or at least was made to do different things than her sister and her friends.  We have tried liquid supplements in the form of "shakes" and "juices" and smoothies.  She completely shuns the Pediasure/Ensure/Boost/type "shakes".  She drank Boost "juice" for a time but then basically refused -- we had her going to the nurse for that for a mid-morning snack thinking it would be fast to drink that down and that it would, as liquid, not interfere with her appetite at lunch time.  She got the point where she did not want to go to the nurse, lingered so as to stall and avoid the juice, and ultimately missed class, was treated differently than her peers, and ingested few if any extra calories.  So we stopped that practice.  I was, from the time they were 18 months or so, cognizant of the downside of all this emphasis on food and what and how much gets eaten -- I sought out parent's only appointments to be sure I did not create problems with K (twin) as we tried to get E to eat more, and things like that. Again, too much data to try to detail, but we have tried many versions of supplements (hidden and overt) and schedules.  In the end, it seemed like any "added calories" we got one place were taken off somewhere else - and this was borne out in her weight making little progress despite the drama and stress (to her and her sister, and even her parents) of trying to get her to eat more.

6.  Then last Spring her Omaha guy sent us to Denver and since then (May 2014) we have changed course.  While I do try to sneak in calories by virtue of what I serve and adding butter to her food and things like that, we no longer require more bites.  The Omaha guy seems to disagree with that approach, but I have to say that since we quit the prodding, very little has changed.  Whereas i think the Denver guy hoped it might actually improve, E's dad and I thought she would lose weight.  Instead she has stayed about even on her arc - which I think is both good and bad.  Good that she is able to maintain without having us prod her for extra intake with each meal.  Bad in that she has not surged ahead at all so it seems unlikely that it was the prodding/drama/stress that caused her to shut down the eating early - as the Denver guy thought was possible. Since May 2014 she has been on and then weaned off Prilosec and there is little doubt in my mind that she ate better on Prilosec (without prodding) than she has since stopping the Prilosec, but since her stomach and reflux complaints have not reappeared (and because Prilosec can interfere with bone development) her doctors are keeping her off it at this point.  If her complaints of pain and reflux increase again (they had gotten so bad over the summer that she would awaken from a  deep sleep and make pain complaints), they will scope her again before we do anything else.  But so far going Prilosec-free is only showing a slight decrease in eating.  

7.  So -- I think I just have to decide if we continue with the Denver guy's plan to let her be her and if she stays on her arc assume she is healthy and the bones will show improvement in two years (seems like such a long time to wait to see if she in on the right track).  OR do we return to our efforts of the first 8 years and re-visit ways of overtly requiring more intake to force some catch-up growth.  I do not believe we will achieve catch-up growth (meaning 3 or 5 BMI percentile) without either a full-on Maudsley approach (which I can't wrap my head around if we don't have an ED to jointly attack) or a G-tube where she eats normally throughout the day and gets supplemental calories at night while sleeping.  But when no two doctors agree she even needs to have any "catch up growth" and don't agree on whether she should get a tube, it does not seem appropriate for her dad and me to say "please give her a tube."  I am back to my fears -- doing too little and suffering down the road; or doing too much when all along she is just a small but healthy kid who needs close monitoring on a number of fronts, but is nonetheless "fine."  We go weeks at a time where she is a normal kid with normal energy with few (for her) tummy complaints and acceptable meals - it at those times that I can't believe the doctors ever had a worry and I am sure the Denver guy is right; but then we get a pothole of an illness, or we travel, or our schedule changes and meals are off just a bit, or her tummy hurts more, and since she has no reserves, every little decrease is apparent. It is those times I worry that the Omaha guy should be pushier and not defer to the idea that all is well. 

8. Last week I did do a phone consultation with Marcia Herrin and she was very helpful. I thought I had a clear picture of what I wanted to discuss and what I ultimately wanted from her but I think it got sort of overwhelming when I understood her to say she does not think bones improve as well as some other areas even upon good weight gain -- that seemed contrary to what we had been told by the bone specialist, so I need to follow up on that aspect.  Marcia did clarify a sibling's role in the family feeding model and that was helpful (cheerleader, not one of the enforcers).  I need to follow up with her, but I understood her to say that she did not think staying where she is, even if on her own curve, was in E's long-term interest.  

Thank you all again for your excellent replies.  I know I am not describing a classic ED situation, even for a young one -- but I guess maybe I needed to vent a bit and see if any of you have seen a similar circumstance or had input on how you would proceed given the murkiness of it all. Thanks!  

I will now surf the web to try to find Chug, as someone mentioned it above and that was a "shake" I was not familiar with.  If we can get E to drink that instead of milk, without fuss, that is a definite plan!





__________________
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, I believe, based solely on weight being less than 75% of Ideal Body Weight (not sure if he also considered low bone density to be a significant nutritional deficiency - not positive he knew her bmd).
Trytrytry

Caregiver
Registered:
Posts: 477
Reply with quote  #18 
I think you may have just found the solution by putting it all out there - while she is well, she eats enough to grow and do things (barely but enough) and seems happy, but has no reserves and when she gets a cold or something, she then becomes undernourished, her brain doesn't work well and it cascades until she eventually recovers and the cycle continue.
How about trying to get a bit so that you have that buffer of a few pounds on her, not heaps but so her normal is slightly higher than now (a few lbs) so when something happens and she drops, she can afford a pound or two and recover..
Whether that is by doing a concerted effort to just get her a few pounds through being home and forcing or a brief stint with an NG - personally my kids have had both, I would go NG before NJ

If it is a bit of a cyclical thing where her symptoms depend on where she is, the drs probably get different views/ideas depending when they see her.

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

Avatar / Picture

Caregiver
Registered:
Posts: 1,851
Reply with quote  #19 
Hi,
You've been through the wringer, haven't you? Yow.
I'm sorry. 

One thing I notice is that, while you have detailed and comprehensive info on your d's physical state and history, you've written nothing at all (pardon if you have and I missed it) about her emotional or mental state or development. I think perhaps it would be useful if you let us know something as well of your d's emotional/mental health.

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? 

And yes, I'd also like to know what happens when you insist or require that she eats more than she wants to.

best wishes,





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

Avatar / Picture

Lead Moderator
Registered:
Posts: 3,544
Reply with quote  #20 
Welcome. Wow you have certainly been through the wringer with your D as regards investigations, referrals, second opinions and third opinions. 

As others have said we can't diagnose. Some of what you raise does suggest possible anxiety disorders - feeling full, feeling sick after eating, yet as psychomom mentions you have not made much comment yourself as to whether you think this is a possibility. 

As an aside my D has been at school all her life with a child very similar to your D. Extraordinarily thin but average height. Ironically she was one of the first girls in my D's year who got her period. She has continued to develop normally in every other aspect but has remained stick thin from young childhood when we first met her till 18. Even my D was at her sickest with AN (she also had a z score similar to your D at that stage) this girl was equally as thin but healthy in every other way. It is uncommon but does definitely occur. 

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

Caregiver
Registered:
Posts: 477
Reply with quote  #21 
Another random idea - since you had twins, were they premmie?? As in 36weeks or less. Just asking as my AN d had a premmie and I won't go into details here as it may be irrelevant but they are finding some have problems regulating food intake as they get older. But only if they were born at an age when they couldn't suckle yet and were feed thru tubes etc for the first few weeks/months.
Just a question since twins are often premature

__________________
I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
mumto3

Caregiver
Registered:
Posts: 446
Reply with quote  #22 
http://www.deandairy.com/products.php?category=18&request=consumer

[milkchugshake_sidebars]

__________________
worried mom
trusttheprocessUSA

Caregiver
Registered:
Posts: 1,464
Reply with quote  #23 
Possibility:

A friend I walk with daily is recovering her health after 2 accidents that triggered an inability to maintain her weight. She saw a specialist and had her DNA analyzed (23andMe). The specialist reviewed the results and was able to identify certain problems I.e she can't metabolize ibuprofen and if she takes it it become toxic in her system. She reports after the accident she was on ibuprofen and built up toxicity that damaged her gut. The specialist sees this as a contributing factor as to why she is not able to absorb food and keep her weight up.

It's a simple saliva test $99. It seems the challenge is to find a specialist who can interpret the results.

As an observer, my friend was eating so many calories a day (she is a professional chef and makes exceptional food) but is was running through her so she was in the bathroom after every meal.
It had all the hallmarks of an eating disorder and it wasn't.

Just a thought.

__________________
Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
mamabear

Registered:
Posts: 5,588
Reply with quote  #24 
I would be curious to see if you could get a few pounds on her in a couple of weeks by supervising 3 meals and 3 snacks daily and upping her fats/cals.
I ate lunch at school with my daughter the majority of 5,6,and 7th grades. I know it is a pain in the butt- but just to experiment ....?!!!..?? See what happens? Require that all food is eaten..?.?

We also had times where my daughter was growing so fast and was so hypermetabolic that we woke her up very early in the morning for extra food. She would be half asleep and I would spoon feed her oatmeal or cinnamon toast etc. She needed extremely high calories for several years at age 11,12, and 13- just to try to keep up. I'm talking 6000 cals daily. And she/we did it.

Why not? What is the harm in seeing what happens?





__________________
Persistent, consistent vigilance!
Tali97

Avatar / Picture

Caregiver
Registered:
Posts: 206
Reply with quote  #25 
What a worrying journey it has been for you and your daughter. It does not seem like you think that you think the Denver GIs advise will work long term. I do understand that have fighting with her over food for so long that it is a relief to be advised to step back and stop fighting. Given that you are reporting she will avoid some foods and limits the amount of food she eats daily, what is present in her life that will require her to change? Without change how will she cope with the increasing energy demands of her body as she gets older.

Why is there a 2 year wait to repeat the bone scan? Did the blood work show that her calcium and vit D and are the levels being monitored? My experience has been 6 month or yearly scans to check for improvement.

Your daughter certainly seems to have had lots of GI problems and has learned that food can cause her distress. It seems like if the GI docs had found a specific cause like Crohn's she would have supplemental tube feeds. What happens if you push after she says she is full? Does she throw up? Suffer pain?

It seems like you would benefit from the support of a good ED clinic like those suggested on here. That she requires eating support to move forward given that her energy requirements will only increase.


__________________
18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.

F.E.A.S.T. Families Empowered and Supporting Treatment of Eating Disorders
is a 501(c)3 charitable organization committed to maintaining the Around the Dinner Table forum as a FREE service for any caregiver of a loved-one with an eating disorder.

P.O. Box 1281 | Warrenton, VA 20188 USA

US +1 855-50-FEAST | Canada +1 647-247-1339 | Australia +61 731886675 | UK +443308280031 

This forum is sponsored by F.E.A.S.T., an organization of parents serving parents and caregivers of patients of all ages with anorexia, bulimia, and other eating disorders. Information and advice given on this forum does not necessarily represent the policy or opinion of F.E.A.S.T. or its volunteers and is meant to support, not replace, professional consultation.

F.E.A.S.T. is registered as a nonprofit organization under section 501(c)(3) of the United States Internal Revenue Code.

Terms of Use | Privacy Policy | Community Rules | Forum Rules | F.E.A.S.T. Principles | YMadmin | WTadmin
Custom Search of F.E.A.S.T. and Forum Content: