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mamabear

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Reply with quote  #126 
It is very common and normal also for kids to start sweating and having hot flashes during Refeeding as their metabolisms rev up. My D went through this really badly for the first few months and then with any increases in calories and fats. It was definitely hard- cold clothes to the forehead helped a ton. The second night of refeeding she ate a large omelette and I rember being worried about how hot and sweaty she was.
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Lmomma

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Reply with quote  #127 
Another resource might be a Pediatric Feeding Disorders program. Their evaluation might help you identify the diagnosis, cause, and most importantly , effective treatment.
Kennedy Krieger seems to be on top : http://feedingdisorders.kennedykrieger.org/index.jsp

Might be worth a call.

Best wishes to you & your precious daughter. Hang in there.
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Reply with quote  #128 
atdt31, I'm so glad my posts have been useful. It's awful to have a kid starving under ones own loving care, so whatever the cause, we all can relate! The meal support skills you learn here are life-saving, and though there is still trial and error and tailoring to ones own kid and circumstances, learning from other parents saves even more time and misery.

Real food has great power! Thank you for your kind words!!!

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yamamama

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Reply with quote  #129 
atdt,
So sorry to hear about your struggles and I can totally relate to the stresssssss of figuring this all out. Keep up the good work, turning over every stone! You will find something to help her! Just wanted to mention that the 'thrush-like' symptom coming up after feeding her more and your d's other symptoms to me very much look like gut dysbiosis. I will supply a link to read on it if I can do this from my ipad. We have had life changing results from addressing gut dysbiosis here. But it is not an easy task. Mainstream docs are usually not trained in this so don't cover it. But it is totally valid with reasearch and experience supporting it. I know many a mama with good results on my other support groups too. BUt you can't do everything at once and that is OK, just keep turning over stones one at a time . . . you will get there. And go with your gut!

http://www.kiwifamilies.co.nz/2012/06/all-gut-dysbiosis/

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galanick

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Reply with quote  #130 
Atdt: have you considered traveling to one of the programs. I really recommend it, with all her stomach issues and being so young I think you would benefit from visiting a high class center. All three have Ronald mc d houses that parents can stay in. Have her assessed for malnutrition medically, make sure not at risk for refeeding syndrome. Many here have ended up finding medical problem requiring hospital stay when assessed by Ed doctor. Low heart rate, blood pressure issues heart problems are common. Other doctor are just not used to assessing malnutrition. Also, have support near by at beginning of refed who can reassure that the discomfort she has is normal , or can tell you if it's not normal. Your really going to struggle refeeding if your not 100% sure it's the right thing to do. It is hardest thing ever, the kids are very un comfortable. I really struggled refeeding my little one because I didn't know if it was an Ed, I was not sure I was doing the right thing. And it was obvious, she lost 10 lb so she needed to gain at least 10 lb. you have no ideal how much she needs to gain. Twin might give you clue, but even identical twins can be somewhat different in size, and can be a big difference with fraternal twins. Also getting recommendation on how much your d needs to eat. it can be a crazy large amount, it's just so hard to do alone. It may take a long long time if you can't consistantly get lots of extra calories in. After you got started then come back here for little things that pop up. Have you checked if any of them covered by your insurance. All these places do nice phone assessment and can give you estimates how long and what level of care would be best. Lots of us here have refed with very little support, but few have had so many pre-existing medical problem and been underweight so long, and were not sure if Ed was the problem or not. Really think it would help to at least get evaluated by Ed doc. They may not be able to say if Ed or not but could help you refed her either way. Osteoporosis at 8 is big deal, it can be crippling. You need to address nutrition while you still can strengthen bones. Sorry if I sould pushy, but it really sounds like you are struggling so much and worry there are underlying medical things that will make things too hard
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atdt31_US

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Reply with quote  #131 
Pcked the kids up from daycare about 5:30. E was fine, normal. Went home to pick up dad and go do some errands and have the rare dinner out as a family. It is roughly a 20 minute drive home in stop and go traffic and as often happens to E, she felt carsick by the time we got home. E needed to go potty before we left home. Sat a long time and I'm guessing had a bowel movement. She said she felt poorly, with that just starting toward the end of the drive home, and I know she would have rather stayed home. But we needed to do some stuff so I pushed for us to stick with plan.

Went to the restaurant first. She never complained but put her head down on the table while waiting a fairly long time for food. Liked miserable. They brought out some steak fries as free apps and she ate a couple of her own accord. No one prodded her. After about four big steak fries she said her tummy was feeling better. We reminded her that several times recently she thought she had a tummy ache but she ate and felt better -- that feeling is hungry, not sick. Did not dwell on it.

When her meal came she ate more than I did: almost a whole adult portion of brisket, more steak fries, and then ordered a brownie sundae and ate every bite. Running errands now. We will see if such a full belly followed by driving and shopping leads to throw up like on Presidents Day.

She is truly a mystery to me.

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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, 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).
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Reply with quote  #132 
It is common that malnourished kids (here, I'm thinking kids with AN, of course), misinterpret hunger as a tummy ache, or "I don't feel good."

With food and time, hunger cues can be properly interpreted once again! [smile]

Great that she had a full dinner and dessert! [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  #133 
She was sweet as could be at the store and did fine in the car.  Got home and she and I were alone in my room - me flossing.  She starts asking about why some people have yellower teeth - I babble some mindless stuff like some people have teeth that will get cavities even if they brush a lot and some people have the kind of teeth that might not get cavities even if they brush all the time - pure blather, like I always do, highlighting that everyone's body is a little different - she's heard this a lot both because it has helped her understand at times why she has to go get poked and give a million vials of blood while her sister stays home and watches cartoons.  No new conversation here exactly.  But then, i thought we were done and I went back to flossing -- 

Really quietly and plaintively she asks, "mommy, do think doctors can ever get rid of a tummy ache for good?"  She said it so quietly and sort of sadly.  My heart broke.  I told her I think doctors can help us get rid of tummy aches but sometimes it takes doctors a long time to figure out how to give us that help.  I was just about to talk to her about worry and how that can sometimes feel like a tummy ache (i met with child psych today and plan to feel E out to see if re-starting is something we should try) -- but before I could go there she said, "I'm talking about why my tummy gets carsick."  She was just so stinking sweet, innocent, and so sadly resigned to just always having a tummy ache.  She really has made frequent carsickness complaints from a very young age -- most recently she thinks if she drinks a lot soon before driving it is much much worse.  I believe her.  I would love her to string together a bunch of days in a row where she could be comfortable and not have the ups and downs of tummy aches.  I think we'll get there - through a diagnosis that has been missed and/or finding ways to get her weight up - - but it is tough watching her in pain in the meantime.  

 

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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, 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).
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Reply with quote  #134 
This might not help, but a carsickness trick is to watch the road. Having the child boosted in the center of the backseat so she can see through the windshield and watch the road is a huge help. This worked very well for Olivia, who has a tendency to feel ill in the car, and now that she's bigger and doesn't use the booster, she still sits in the center of the backseat so she can see the road. I think this allows visual input to her system of balance, so her body is prepared for motions before they happen.

I am aware of this strategy because I'm also prone to motion sickness, especially in large cars/vans, when I always ask if I can ride shotgun!

Sending warm support!

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

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Reply with quote  #135 
Quote:
Originally Posted by mamabear
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.  


So I've had some success without really changing anything other than what I sneaked into her food.  (Okay, full disclosure - we had summer like weather the last few days and she just may have eaten three drumstick ice cream cones on two of those days!)  I weighed her today and she was 49 pounds. That is an all-time high and is up .5 to 1 pounds from her highest.  Still on the Denver Plan of not pushing food past when she wants to be done, but I have incorporated some of this forum's tricks and apparently they are working.  I think my old tricks worked when she was maybe 3 to 5 yoa - but at some point my measly additions did not make a difference.  Because I failed to realize how much more added calories she would need as she aged/grew, I failed to increase my sneaky calories.  Still, she has stayed on a fairly even arc - but with your help (read:  canola), maybe I can get her actual arc to move up.  She is still below the 1st Percentile and I think at this height she'd need another 4.5 pounds to even reach the Fifth Percentile and for the first time not be underweight per the BMI calculator.  (I know, her Target Weight might be more -- I am going to try to work with *someone* to help us figure out a proper target weight.  I don't know if any of her current team of doctors can help us with that or if we will need to keep down the path of finding an ED doctor.

Also, I have changed my work schedule for a trial basis of a few months. I am hoping that having an extra hour at home between school and bed will result in a long enough break between dinner and bed that she can have a larger snack than we usually manage before bed.  

Unless her hunger cues change as the weight goes on, I can't see how this is sustainable -- I can't really add HWC and canola to her meals forever. But at least she has a little bit more buffer in the event of illness -- I never want to re-live that President's Day fiasco when she dropped into the 11's BMI and I contemplated the ER for dehydration.  

Thank you all for sharing your wisdom on this forum - I swear I have focused on getting her to gain her entire life, and had the help of physicians by my side the whole time, and yet this forum is where I learned the most.  Best wishes to all of you in your journeys in the world of healthy weights!

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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, 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).
Torie

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Reply with quote  #136 
Bravo

-Torie

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mumto3

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Reply with quote  #137 
Great job,

It will become more intuitive after a while, and easier to add those fats in.  She is going to need even more fat to get through puberty in a few years, so this may just be your new reality.

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galanick

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Reply with quote  #138 
With the little guys I would not worry so much about goal weight: you will know when you are there because they will grow and suddenly you will be behind again. Find the amount of calories she needs to put on 1-2 lb a week. It could be very long time until she eats intuitively, she will get used to the extra amount quicker, she just won't be able to do it on her own.
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atdt31_US

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Reply with quote  #139 
So, here's the what just happened in the Land Of E.  Pretty sure I did not handle it correctly, but I said what I said.

Put the kids to bed (they share a room) after a completely normal night with good dinner, fun after dinner, etc.  About ten minutes later E comes down looking sad and says K said something that hurt her feelings.  What did K say, i ask.  She said "a person's weight says a lot about them."  So upstairs we go to figure out the context for the comment.  K is less than forthcoming and as E fills in the blanks it seems like a lot is left out - neither girl is willing to explain what was being said before the comment.  I am not really sure how they got to the topic of weight - something about who can lift a table (which was a carryover from a joke about picking up the table - like cleaning it).  Anyway, E says after K made the rude comment, E asked K for an example and K said like if you are pretty fat you won't be able to run very fast.  As they talking and sort of relaying the conversation and/or K's meaning, E  said she doesn't like it when the kids at school talk about her weight because it makes her feel different. 

So the three of us have a little chat about not worrying about how people look, and people come in all shapes and sizes, and that sort of stuff.  This is not something that has been met head-on much in this house but the kids are certainly hearing others at school, etc, and so it is time to nip this in the bud. So after a little bit of more talk about being sure your words don't hurt anyone else, I let K go to sleep and I go over so I'm just snuggling E, who is still wiping her eyes on the blanket she came home from the hospital with ( she is so young still!).

I ask her how much she thinks about stuff like this, and how often she feels like this and she says a lot.  She is tearing up.  She talked about feeling different and the kids always saying how skinny she is when they pick her up, and she doesn't want to be different.  So I'm sort of playing the stuff I've read on here in my head.  But I just went with my gut and pursued it a bit -- asked her about her tummy aches.  Talked about how sometimes worry can make a tummy hurt and not feel like eating.  Ultimately, she says she thinks some of her tummy aches might start in her head (parroting my words) but the other ones start in her tummy.  As she kept talking, that made less sense to me but I'm not sure if she just went off on a tangent enjoying her own voice -- something about the ones that start in her head make her throat hurt.  We talked about trying to eat even if there is a tummy ache and she said that sometimes she can but sometimes there is also something stuck in her throat and that makes it hard, too.  She talked about reflux (not her word, but her clear description) also hurting and asked why [Omaha GI] did not get all of the bruise out of her tummy when he went down there with his camera and she wishes he had taken all of the bruise out.  (referring to endoscopy in 1st grade and a finding of gastritis).  Said she worries about needing another surgery and that makes her tummy hurt just thinking about it.  But also said she has three kinds of tummy aches and two of them are just her tummy and not her head. (she does indeed have at least three types of tummy aches she complains of at times). 

Sort of a confusing convo, but she's a confusing kid.  When I asked her if she'd like to go talk to child psych again to see if she could help so none of the tummy aches happen because of worrying in her head -  she at first said yes but then also said she feels different when she always has to go to doctors and she also misses good stuff at school so she's not sure if she wants to go or not.  But she does agree that going would be a great thing if child psych could help make her tummy not hurt so much.  

So then I am not real sure where to go in this jumbled conversation.  On the one hand I'm saying how people look doesn't matter and whatever size they are is not important, and on the other hand, I've spent 8 of 9 years asking her to eat more because she needs to get her body bigger (not my words, but she gets the sentiment).  Size doesn't matter -- except yours because you are so tiny your body can't be healthy;  well, I don't know how to give both messages to a nine year old.  But she's snuggling, and teary, and sad, and she clearly thinks of this stuff a lot.  So I tell her I was hoping we could figure out a shake she can drink that is small and doesn't take up a lot of room in her tummy, and that tastes good and also that has lots of extra stuff in it to help make her muscles grow so she can catch up to where she would be if her tummy did not hurt so much.  (I've had little luck with smoothies or shakes).  She says yes, she'd like to work with me to find one that she likes so she can do that. And she said she doesn't know why it would take the doctors over 8 years to fix a tummy and she wishes they could get it done soon.

Did I blow it?  I know, I watched the logic video and I probably did exactly what it said to not do.  But she needed some conversation about her situation and I was caught off guard that it would go this direction.  We left it I'll call child psych and try to make an appt that doesn't make her miss out on special things like Girl Scouts but that I could not promise that.  I told her that a lot of the time when she finds me on the computer I am reading about tummies to see if I can figure out ways to help her tummy and that maybe we can find another doctor to help Omaha GI so she can get her tummy fixed quicker.  I told her we'll work together to see if we can get her body to grow a little quicker and that the most important thing is to keep her healthy and sometimes that means the doctors have to sort things out and that can take a long time.  Now that I've told her the shake will be extra-powered-growing-food is she going to double back and avoid it at some point?  Did I just lay the ground work for her to latch on to something and trigger an Ed?  How do you not attempt some form of logic when they asks pointed questions about their situation.  Thoughts?  Five year olds were easier!!



 

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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, 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).
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Reply with quote  #140 
Hi ATDT31 - I think it sounds l like a great conversation.  I see your dilemma about all shapes and sizes are good so why does hers need to change. I think the answer is that all shapes and sizes are good if they are the size that person was meant to be.  Your d's tummy and head problems are keeping her from being the size she is meant to be - whatever that is will be fine, and you will make sure she gets there.

I'm so impressed that you were able to have such an enlightening conversation with her!

Keep up the good work!

-Torie

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atdt31_US

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Reply with quote  #141 
Well said, Torie -- thanks.  I'm gonna use that!



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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, 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).
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Reply with quote  #142 
It's great that she's talking to you about how she is feeling. The best thing with little ones is that we can really be on the same team together--they know they need us as parents.

My daughter has gotten tons out of her psych for her anxiety disorder--we were able to find a behavioral psychologist with Saturday appointments (she was also our FBT)--just wonderful because no worries about missing school.

Sending warm support!

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

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Reply with quote  #143 
I think you did great atdt. The trust vs logic video is about the fact you can't talk someone out of a fear. Doesn't sound like you tried to talk her out of fears, but helped her identify her fears. This is awesome. By identifying fear, you shrink them. Fear of unknown is terrifying, but when you identify / label fear then it's not the great big unknown anymore, it's something concrete you can work on. You reassured her that although her fears are real you will help her with them. That's perfect. You validated that her fears are real, you get it, you will be there for her. In that conversation, I see 3 big fears she identified

Fear she will lose her identity: she see herself as little kids others pick up. This will change if gains weight, where will she fit in then. It sound like you did good job reassuring her that change happens, it's hard, you get it. Mom can't fix it. You know logically that it is really not her identity, but works better if use trust. It will be hard, it will be ok because mom will be there to support you. Just trust me it will be ok if you gain weight.

Fear: of doctors and losing fun time because sick. Sounds like you have been through ringer with doctors. Really sounds like you have eliminated treatable causes of stomach pains. We have had some experience with gi doctors that have been very frustrating to me. They are all about doing a bunch of invasive tests to find out what problem is, but the reality even if they find something it won't change the treatment, they will just have a name for it. What would things look like if you took step back and tried to learn to live/ eat with stomach pains. How would your d react if you said doctors can't "fix" your tummy, but it's ok. I do think after so many test kids start to think the adults don't believe pain is real, doctor keep saying nothing is wrong. How would she feels if told her doctors found out pain is real just they can't fix it. It hurts, but the doctor say it will not get any worse, and they think you can learn to control the pain. Learn how not to notice it so much. we are going to try some things to keep it from interfering with your life. in dbt they teach a saying. Pain is inevitable, but suffering is optional. You may not be able to take away the pain, but we can deal with more effectively. Having control can help with the anxiety that comes with pain. How about trying game , snack scientist, to find best smoothy snack. Have little scientist book, and let her keep food log about which snack she finds best, which one can she eat the most of without stomach ache or maybe smaller stomach ache. I'm sure you have done lots of food logs but concentrate on making it fun instead of factual. Things to concentrate on other than her stomach. Hot chocolate made with cream vs ice cream smoothly, does color matter, try fun color, pink smooth vs blue. The point isn't really best food but to distract her from stomach, and you might find something that she is sensitive to. But, she is control, she decides how to change things tomorrow. Make snack fun, keep emotions down, scientists do experiments on facts.

Fear of tummy aches: sounds like she was able to break them into three kinds. How insightful. Sounds like that is farther than some of the doctors got. One of things that the said at duke, was some of these kids are just super sensitive to body sensations. Things that other don't feel, they feel. They feel things people really not intended to feel, and it can cause then to be overwhelmed. They talked about kids that feel there pulse, could tell you pulse rate just because they feel it. Feel there esophagus distending when they swallow, every little gas bubble in there stomach. Does this sound like your d? Does sound like she is very aware of her body for her age. For these kids they can't fix the stomach pains as they are normal gi function, but teach kids how to tolerate these sensations. Reflux symptoms, I assume she already has treatment for this. My d has reflux and she find chocolate milk soothes her stomach. I don't know if it really does, but she thinks is does. Anxiety causes pain, but will also make any pain worse, so if can work on anxiety can decrease pain. I skill they suggest for my little d was bubbles. With adult controlling breathing helps anxiety, but breathing exercises are too boring for little kids. But in order to blow bubbles you must control your breathing, also added benefit of being fun. So before new foods and after we are trying bubbles.

None, of what I am saying is meant to be "how to do things". For sure, my kids are a mess, first family snack time was total disaster. but maybe a different way to think about things, new things to try that you might not have tried.

You are really doing better than you think, this is very slow.

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Torie

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Reply with quote  #144 
Wow, galanick, amazing post!

-Torie

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atdt31_US

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Reply with quote  #145 
Thanks, galanick and all -- it is good to get your thoughts and I can start to think ahead to such discussions and incorporate your talking points.  Very helpful. Galanick you are right that I need to broach the idea that the tummy aches might not magically go away forever one day, but that she might just learn ways to work around it.  She is a very information-driven kid but also internalizes stuff in ways she does not always share (at least for a while) so I need to think through what the approach will be and stick with it.  I think last night was a good start to build some conversations on and potentially get to a point where she can hear how her body needs more calories and that is why I want her to drink the shake.  We'll see.  I made a child psych appt her so maybe she can get some relief from some of the anxiety as we continue beefing her up and possibly addressing physical tummy stuff if it seems like there is anything physical to address.  Thank you all again for sharing your wisdom!
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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, 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).
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Reply with quote  #146 
Quote:
Originally Posted by atdt31
  Did I just lay the ground work for her to latch on to something and trigger an Ed?  How do you not attempt some form of logic when they asks pointed questions about their situation.  Thoughts?  Five year olds were easier!!



 


I doubt seriously if you just laid the ground work for triggering an ED. I will tell you though that one thing I wish I had done differently at your daughter's age...not so much logic. I haven't read all of the comments, but from your post I am gathering that's what was suggested. I always thought taking the time to explain why things were a certain way was the loving thing to do. I really wish I could go back and more often say, "That's why you have a mom and a dad. We are supposed to worry about those things for you and take care of you. Life can be confusing when you are growing up, but because you have a mom and dad, you can relax and have fun and know that we are taking care of you. Now, you need a shake. (or whatever it is that she was worried about)"

I have to confess that even with a 17 year old, I have started saying "because I said so" more than I ever have.  I have to sell it a little more than I would have at 5 or 9, but sometimes it seems like she really doesn't want to stress about the details of certain decisions, and she is able to relax knowing we have it handled. I am working on her developing independence as well because, for pete's sake, she is 17. But, it almost seems like knowing I will step in and handle certain things helps her to relax and handle the other stuff in her life.

Hang in there, you are doing great! Hopefully you will be able to sort out the tummy ache stuff too. That's no fun for anyone to deal with! Edited to add: I just read back through the whole thread and wanted to add.... Poor baby girl! She sounds so sweet, and she (and you) has certainly been through the ringer with the health issues. I hope you are able to find all of the support you need to help her continue to keep healing and growing!

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atdt31_US

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Reply with quote  #147 
Great food for thought, las, and it makes sense.  Thank you.  Seems like such a balancing act, and one that has to be done for such a long time -- it is so good to hear from those of you who have walked this path.  
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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, 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).
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Reply with quote  #148 
Quote:
Originally Posted by galanick
In that conversation, I see 3 big fears she identified Fear she will lose her identity: she see herself as little kids others pick up. This will change if gains weight, where will she fit in then. It sound like you did good job reassuring her that change happens, it's hard, you get it. Mom can't fix it. You know logically that it is really not her identity, but works better if use trust. It will be hard, it will be ok because mom will be there to support you. Just trust me it will be ok if you gain weight.  


Just re-read this and I wanted to thank you, galanick.  The idea of fearing the loss of an identity is not something I had really thought of. I do know and have said many times that she identifies as "small" (and as a patient/victim) but I had not really carried that forward to see that part of that could be a fear of losing that identity and not knowing how it would be replaced -- thanks for so concisely spelling it out for me - I was circling but not sure I would have gotten to that point.  Thank you!

BTW:  she has agreed to a mid-morning snack at school again (we did that in First and Second grades) and says she is okay going to the nurse to eat it.  I will talk with her teacher Monday to set it up.  The kids get dropped off about 8:00 and lunch is not until 12:45 so hopefully we can find a time around 10:00 where she can escape without missing too much class.  She said she'll eat a Zone Bar on odd-numbered days and a Dark Chocolate Milky Way Bar on even-numbered days. Steadfastly refuses any sort of Breeze or Pediasure, etc.  If eating the Zone Bar is taking too long I'll see if I can get the nurse to serve up a pre-made "shake" of whole milk, HWC, and chocolate syrup.  But drinking liquids fast does seem to be a trigger for tummy aches with E so I'll let her try her plan of a Zone Bar/Candy Bar and see how it goes.

Last Spring I talked to the school nurse and she agreed Erin could be given a waiver to eat in class -- I thought something like a cut up Zone Bar so she didn't really take bites, but had bite-sized pieces, would be non-disruptive (still an issue with no peanuts allowed in school and Zone Bars are made in a plant with peanuts ….) but E's Ped said "no" to signing the medical necessity of that plan.  So I guess she'll have to go the nurse and miss class at least for now.  I think Ped thought it would make her singled out and play into her feeling different, which I understand somewhat, but I don't see how making her leave class is any different and makes it harder for her because she actually misses stuff she is supposed to hear from the teacher.  In the big picture, those balanced calories are worth it if in fact she will go to the nurse and quickly eat 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, 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).
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Reply with quote  #149 
Hi!

I think the nurse's idea is a good idea anyway--eating bites in class would be very hard to supervise, and unless she is eating easily, lack of supervision might make it harder for her.

Sending warm support!

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"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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Reply with quote  #150 
I feel the identity of being a patient and small are huge.
Having been around lots of medically sick kids, there are huge differences in their behaviour and maturity and my observation is that it has a lot to do with how the kids are treated. These are kids with serious medical life threatening illnesses or life long illness that will always need treatment.
My observation for what it's worth is the kids who have parents who treat them differently because they are sick, they are let to get away with bad behaviour or get treated like they are delicate, aren't allowed to run around like a normal kid because they are have a line or tube in, when it is safe as long as it is secured properly. If kids are treated precious or different, they behave and act that way.
The children who are treated with the same expectations of behaviour as normal kids behave, I always expected my d to do her chores, bad behaviour was not tolerated and we found ways to get around things to let her fit in and do the rough and tumble. Yes when she is sick and vomiting in hospital from chemo she doesn't have to do the washing up but what I am trying to say is that children seem to behave how they are expected. GI drs like doing tests - and your d has been poked, prodded, etc, maybe told or treated (not intentionally) poor you, you are sick, you are little, you are x.

It is very hard to treat sick kids equally but I think it is much better for the kid if you can. And it might not be u, the teachers and other adults may be giving these signals. Just something else to think about.

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