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mumto3

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Reply with quote  #76 
I think that with or without the ED diagnosis, it can only help your D to put on some weight - especially increasing fat calories.
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atdt31_US

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Reply with quote  #77 
Thank you Torie.  I am not a crier.  I am crying right now.  I am terrified and if I go down this path I will not be hailed a hero by my husband, mother, or anyone.  I will be blamed for being nuts and going on-line and listening to a bunch of strangers and not listening to our doctors and then changing our whole lives and ruining her childhood by introducing Maudsley to our house.  I can see their point.  If there is an ED diagnosis I hope it is supported by more convincing evidence than what her other doctors have managed in terms of their theories. 

This is the second time in 9 years my kids have been to a sleep over.  Did not intend to use my night off crying and stressing and likely not sleeping.  

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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  #78 
ATDT31 - You are contacting world-class experts to help figure out what is going on with your d - they may say it is an Ed; they may say it is not an ED but suggest some other avenue to pursue; they may say it needs more study. You are her mother - it is your job to get the best information you can get.  We're not doctors here, and we don't claim to be.  But we do know who the true experts are in this field, and your d is lucky you will stop at nothing to get a proper diagnosis.

So so sorry it is so hard to figure out what's up with your d and seeing some of the possibilities are really scary.  We can't diagnose, but we're really experts at providing a shoulder to cry on.  We understand. We really do.

Hugs,

Torie

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YogurtParfait_US

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Reply with quote  #79 
My reply was eaten by the computer. AAAAAAARHGHH!![bawl]

Sigh. It was Hall of Fame material, too .... [biggrin]

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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)
mamabear

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Reply with quote  #80 
Your doctors telling you that " the stress about us pushing her to eat has contributed to her lack of eating"..,

This is attuned to the old school attitude of " don't be the food police" and " they have to chose to eat". It's putting some sort of messed up blame on you being " controlling" .

If she had cancer would you insist on chemo even though she cried and screamed bc it would hurt and make her feel sick? That's one thing that all of us at one point or another have had to come to terms with. Because it is food and something we all have to do every day we have a skewed view of it. It is hard to accept that a child cannot eat properly to sustain wellness because it is so bizarre and illogical. I NEVER thought in s zillion years that my kid could get an eating disorder in elementary school.

I truly ache for you and your situation- and just want to empower you to challenge your own fears. The thing is- making food mandatory is hell at first and for awhile/ but not forever. She is 8. You have youth and time on your side!

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Torie

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Reply with quote  #81 
Quote:
Originally Posted by mamabear
snip
The thing is- making food mandatory is hell at first and for awhile/ but not forever. She is 8. You have youth and time on your side!


Yes, but ...  If I understand correctly, ATDT31 has been given advice by a doctor who does not believe her d has an ED.  Her doctor may be correct about that.  Or he may be incorrect.  But in any case he is her doctor.  

Personally, I would not start making food mandatory on the advice of people on an Internet forum, against the advice of the doctor on the ground, especially in a situation that is not how AN typically presents.  But maybe that's not what you were suggesting and I misunderstood?

-Torie

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mamabear

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Reply with quote  #82 
I am not suggesting anything..... I am not saying to go against this doctors advice or to follow it. I am simply saying that if in the end it is necessary to up the anty and get more weight on this girl/ more than she is capable of doing on her own- resistance will be there.

I hope there is a clearer route soon for you! The waiting is the worst.

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Amoma

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Reply with quote  #83 
It doesn't matter if she has an ED or not. She has osteoporosis at age 8 caused by lifelong pervasive and profound malnutrition.

To remediate and solve osteoporosis what are your options? Drugs, or .......food.

We can help with the food because status quo is obviously not working.  The results of doing nothing speak for themselves. (and again sorry if this is blunt also) ....

Sending you warm strength for the day ahead. Its another day where she is home 24/7

atdt31_US

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Reply with quote  #84 
Quote:
Originally Posted by Trytrytry
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.


Why NG over Gtube? With the NG is it in 24/7 and only in use over night or do you insert it each night before feeding and take it out in the morning?

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Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
Trytrytry

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Reply with quote  #85 
Personally, I have no idea what to make of all this gastro stuff (not you but in general) it is an area where people have many symptoms, tests rule out the organic stuff that you are glad but still offers no answers.

Just FYI my family has always been the 1percenters. I am 164cm and a touch under 40kg (5'4" and 85lbs for the U.S. amongst us.) and all family us similar. at this weight my BP and cholesterol etc is fine, but if I gain, my cardiac risk factors go through the roof. Have been old by cardiologist whom I trust not to gain weight and same for family members.

Disclaimer: My own opinion, no medical advice.
I went through similar to you and had to push but eventually the tests came back bad and gad lots of treatment. But tests showed up severe organic causes. But they still would complain of stuff unrelated to their diagnosed problems.
I noticed that kids pick up lots of little things that happen at drs and hospital they are so smart. And can be unable to distinguish friends from nurses etc whose job it is to always act nice and become their friends. I think this can alter their behaviour, not intentional attention seeking but more like becoming institutionalised. They unintentionally behave how they are expected to behave.
Plus when I have been in the US, there is ad, after ad after ad on TV where drug companies seem to 'make up'' no existent 'illnesses' in an attempt sell some useless med, our kids see these.
Also the western medical system Compartmentalised if your illness covers a few specialties, you have little hope.

Yes, your mommy gut instincts are prob right. My kids and extended family are the one percenters when healthy
The one good if bad thing is having a twin, that means you could look at her as a comparison or alternately she is her own person and issues

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Amoma

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Reply with quote  #86 
not all 1 % ers have osteoporosis though, am I correct?

If her body was really healthy as is it would be. Osteoporosis is not.. People are meant to be taller shorter bigger smaller but there are some conditions that are lifelong health risks...

atdt31_US

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Reply with quote  #87 
Quote:
Originally Posted by Amoma
not all 1 % ers have osteoporosis though, am I correct?





I do not know this answer.  I do know that they've said Prilosec can inhibit bone growth (they told me how but I can't think straight right now).  She was on Prilosec for, I think, most of the first 15 months of her life.  Plus, during that time she also got poor nutrition (still spit out/up a lot of what was taken in).  Even then, she kept in enough to stay on her cruddy arc, but not enough to raise the curve.  Then there have been several other stretches on Prilosec since about age five - but none for more than 4 or 5 months.  It is unclear to me why Bone Guy said he believes this is left over from infancy -- I only met him once and he was quite thorough and informative and seemed to want nothing but the best for us, and so when he said it with such confidence I did not really question it.  I do not like that they have to wait so long (two years) to confirm that theory, and I really don't like that one of the issues they plan to look at to see if there is a problem is when she starts her menses.  That could be 15 (was for me).  I was very thin, an athlete, and late bloomer.  I don't have any idea what my BMI was, but I would guess not nearly as low as hers. 



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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  #88 
Quote:
Originally Posted by Trytrytry
 The one good if bad thing is having a twin, that means you could look at her as a comparison or alternately she is her own person and issues


It is hard to not get caught up in comparisons.  But as they are fraternal, I do not know how useful it really is. More confusing than anything.  Twin (K) is in 92% for height and for weight (not weight for height).  So she is a bigger than average kid (now).  My husband is 6'5" so no surprise K is tall.  But my husband has two siblings and a mom who are quite short, and E has a cousin who, until this last year or so (8th or 9th grade I think), was at the 2% mark (bmi).  But he did not have E's stomach complaints, so not exactly apples to apples.  Still, looking around the family tree can lead to all kinds of conclusions, at least where the tree on her dad's side has so many different sorts of apples on it.


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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.
Foodsupport_AUS

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Reply with quote  #89 
By the way is her bone age normal? 
Reduced bone age would add even more weight to this your D having failure to thrive despite her continued increase in height. 
Her difficulty in feeding may be due to eating disorder or other disorders that increase the chance of picky eating if there is no other physical cause. What you do note repeatedly is that she does not seem to eat normally. 

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atdt31_US

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Reply with quote  #90 
Bone age normal.
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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  #91 
I had understood bone guy to say if they are normal age, the density being low is more concerning because if the bones "think" they are younger than the density may not have been expected to be as high as what they were looking for in E.  I am not totally clear on it but that was my understanding.  I had also understood Denver guy to say if bones were lacking in density that would be a sign maybe we need to intervene -- but when he was given the bone results and bone guy's conclusion, he said he'd defer to bone specialist and did not seem to have major problems with it.  Again, Denver guy is very focused on four years of steady growth regardless of the actual numbers.  And again, i can't say if that is a proper medical conclusion to draw, but her Ped and Omaha GI have not fought (at all) for a different reading of it.
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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  #92 
Good morning! I hope the sleepover was a blast!

I was thinking about something and I have a question,,,

In the discussions of placing a feeding tube, how does that change anything? All that they would be doing is taking the esophagus out of the equation and the actual chewing and tasting of food. Her GI tract would still be doing the work and she would still have the feeling of fullness and possible pain and reflux etc.

That is confusing to me. Before placing feeding tubes would they not want to try higher density food and more fats and cals? Is it because they think it would be " easier" for her somehow?


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atdt31_US

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Reply with quote  #93 
Well I will give you my best guess but although the doctors have spoken of it at various times none has ever stuck with it long enuf to talk in terms of what type of tube, what the exit plan is, what weight they'd want to see before they pull it, or any real details. I believe Ped and Denver guy have spoken in terms of g-tube and I suspect that is because it would be less visible and maybe less traumatic to her as she goes about her school day. Also she would have normal oral function to eat like always and then plug in for supplementation at night. The fact they say Gtube makes me think they think it would be lengthy. Omaha guy spoke in terms of NG. I do n't know if he meant put it in each night or if it would stay in. And I don't know for sure but I would guess it is harder to eat normally with that tube in???

We are having a terrible day here with a cold starting so stuffy sinuses. Plus over-tired. Stayed up WAY too late last nite and complained of tummy pain so the mom made her a burger at 1:00 am. That helped and she slept well thereafter. Very little in her so far today due to tummy pain that is real and bad constipation. She has drunk her miralax and is voiding some but there is no doubt she is in pain. I am upstairs with her trying to let her nap with the hope she'll sleep a bit and then be able to pass a stool and then get back on track.

This week will be telling. I plan to try to talk to her local child psych we saw last spring and her Ped whose instincts I really trust when I can get his undivided attention on this. Her dad still thinks she's fine and I am looking for problems where there are none. The fact that three doctors have said she is fine does not help him appreciate my continued questioning of where we are.

She seems so tiny right now. Yesterday she was full of vitality and today she is a mess. I fear what her weight will be when she's done getting out the stool. We had halved her miralax while recovering from the dehydration after Presidents' Day and apparently my H did not get the memo to go back to full strength. She's had half doses for a couple weeks ( although I made it a few days so she did have full doses some of that time). So her complaint is real right now. And hopefully she has the reserves to get the poop out and get the tummy back to normal and eat better by evening.

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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.
PurpleCatUSA

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Reply with quote  #94 
You have gotten a lot to think about here.  I am not trying to add more confusion, just sharing our story so far.

I did take my d to an ED specialist and my d was not diagnosed with an ED--essentially my d has not lost enough weight to be considered an ED.  So, it is possible to go to an ED specialist and for them to find that it is not an ED.  The specialist called it disordered eating.  (For us, though, that really wasn't helpful).

However, in our case (which is completely different than yours), I did not want to let d lose any more weight so that she would qualify for an ED; or for her to fall off her growth curve in height.  That didn't make sense to me.  So, I started magic plate with her pretty much on my own. I upped her fats (avocados, HWC, nuts, olives) and required that she eat what I gave her. The first 6 weeks were rocky.  But, I think we are headed in the right direction now.

As a mom, trust your spidey sense.  If your d is doing well, and is a happy kid the vast majority of the time, then waiting and seeing seems reasonable.  If your d is unhappy or irritable or cranky more often than not, then you might have some things you need to address--these might be physical health issues and/or mental health issues.  Experts can be wrong and can give bad advice.  I have had that happen, as have many other parents here.  This happens a lot in mental health fields, unfortunately.  So, keep reading, researching, and working your way through the information you find.  Trust yourself.  You are doing everything you know to do for your d.

Purple



Torie

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Reply with quote  #95 
ATDT31 - Can you tell us what we could do that would be most helpful to you at this point?  Would specific tips about increasing caloric density and fat levels be helpful?  Or?  

-Torie

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doctorp

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Reply with quote  #96 
Hi - just my five cents, but basically malnutrition resets your hunger and satiety cues and makes them essentially unreadable.  The brain messes with the process and tells our young ones that they are full when they shouldn't be, and that they are not hungry when they should be.  The only way to reset this is to feed mechanically, according to their nutritional needs, and accept that you are feeding beyond the point of fullness at each meal and snack, and become one with that.  Everyone wants to feed intuitively - eat when you're hungry, stop when you're full - but that just won't work here.  

The single biggest mistake I see when I see families is that they've been told to feed their kids intuitively, and not worry about it, and then also to feed them too little.  Kids need a lot of calories in refeeding.  Even the little ones.  It is very rare that I can get an 8 year old to gain significant weight on less than 2400 calories/day, and often they need 3000-4000.  I treated one energetic 7 year old who needed 4800 calories/day to get well.  It certainly happens - everyone is different, but if your kid is not gaining, and she has had a thorough medical workup, then she just needs more food, period.  So whatever folks in Denver or anyone else say, that will end up being the bottom line, and the work won't change.

Again, I haven't met your daughter - so feel free to disregard.  But just wanted to put this out there.  Take care - Rebecka Peebles
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Reply with quote  #97 
PS We definitely have to use NG tubes sometimes in kids this age.  I don't think you should need a Gtube unless I'm missing something.  - RP
Torie

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Reply with quote  #98 
Hi ATDT31 - As you may already know, Dr Peebles (above 2 posts) is one of the very best ED experts; she and the rest of her team at CHOP (Childrens Hospital of Philadelphia) do a fabulous job and thus enjoy a well-deserved excellent reputation.

-Torie

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mamabear

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Reply with quote  #99 
Doctor Peebles- that is exactly what I was trying to say. To a T. My daughter needed 6000 for 2.5 years. And at that level we only were able to keep up with small gains! Then everything corrected and now she eats intiuiyively and normally. Her hunger/full button was wrecked. She would have never eaten enough on her own.

I think a lot of doctors who are not familiar with how Ed's affect young kids just don't even " go there" because they have the stereotype 17 year old presentation in their minds.

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Amoma

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Reply with quote  #100 
Thank you for responding Dr. P and that validates what we were advising on here. She needs more food to gain weight. 
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