Alarmingly underweight tween

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How much does she weigh?

She is 4’6” and 53 lbs. Almost 12.

I know you are trying to do the right things, OP. Just want to comment that I have a son with similar stats. I think he was 4'6" at 11 and right around 55lbs. We never thought or were suggested to do anything like a feeding tube. In fact, we never were instructed to do anything to medicalize DS's eating/weight like you have been doing. He is now 12 and 3/4ths years. Last fall, he had a sinus infection. He had been around 61 lbs before he got it, but then wasn't eating well and dropped down to 59 lbs. (he was around 4" 11" at the time). Anyway, we got him some antibiotics and he got better quickly. He typically gains about 3 lbs per year. That's been true since he was about 4 yrs old.

I was thinking he would be in HS and not yet 70 lbs. (He's in 7th grade). Well, since the beginning of Dec. '18, when he got better from the sinus infection, to now, he has gained 10 lbs!!!!! This has not happened -- perhaps ever! Even when he was a baby, I don't know if he ever gained 10 lbs in one year! He is now right around 69 lbs. Prior to the last 4 mos, he has been the worst eater. As a toddler, he would eat nothing for lunch but ONE pancake with butter. That's it... for like a year! He never eagerly drank his bottles. He's been an anxious kid in some ways -- fears in general, now fear of flying, doesn't like roller coasters or dogs, and has always been very distracted at the table (hard to keep him there, takes 2 hrs to eat the simplest dinner every night for YEARS, etc.). He is 12.75, but if you saw him, you might think he is 9. When I see him with his legs and arms exposed, or if he is in undies, I always though he looks emaciated. Yet, I cannot get him to eat.

My sister is a registered dietician and has a PhD in Nutritional Epidemiology. When I visited her in Dec. and told her how low-weight he is, she was alarmed. We calculated his BMI -- and she was still alarmed. I gave her all the weight and height data I had for each dr's visit since DS was 2 yrs old. She was pushing me to DO SOMETHING!!. (Of course, DS is not on the growth charts.). Our pediatrician has never been alarmed. They have been concerned and talked to DS about needing to eat, but they have never suggested that we needed to take additional action. So, we didn't. My sister was critical of the pediatricians' lack of effort in regard to DS's nutrition. Well, I didn't really know what to do after my sister was pushing me. And I didn't want to cause DS additional anxiety about food/weight. So, I didn't do anything different that what we have done for the past 12 yrs.

Something must have changed, however. And it wasn't something I did. I think his exposure to middle school PE and locker rooms may have brought HIS attention to his size and general weakness compared to other kids. I noticed about a month ago that he had gained 5 lbs since his illness (so he was about 64 lbs). That was really good for him -- to gain 5 lbs (!!) in a few months! DS suggested that I should buy a new scale (b/c he doesn't like the one we have). I said "if you get to 70 lbs by the end of spring break, I'll buy you a new scale." He was totally down for it and he's on the way to doing it! This is beyond my comprehension -- that he is gaining weight (at least somewhat) and that HE actually cares enough to want to gain!

All I'm saying, OP, is that it's a fine line to know how much to push and when to not push b/c the pushing creates more stress about feeding, which could create more resistance. I totally feel for you. If your child's ability to engage with school is fine and she doesn't have an actual physical ailment that requires a feeding tube, I would be very hesitant. My son isn't on the growth charts yet, but he might grab on to the 5th percentile by the time he hits 13 yrs and 75 lbs. I think he might actually do it!!! If a child is fainting or having other problems where they express a distorted view of their body, then that would be reason for me to take additional measures.

I just wanted to give you a little hope that things CAN change. And that there are other kids out there would have similar numbers. I still believe in the saying, that you can lead a horse to water, but you can't make 'em drink. Of course, if the horse is in distress, then you hook up an IV! But, for me, I didn't have the desire to medicalize DS's low weight without some indication of actual distress.

I just wanted to point out that the social messages that a middle school boy receives about size and eating are VASTLY different from the social messages that a middle school girl receives.

I also think you were remiss not taking your sister's advice. Pediatricians miss stuff ALL THE TIME. My friend's pediatrician missed that her child had autism until he was 5 1/2 when a teacher caught it!

[Anonymous]

I think OP really means well. But as someone who has struggled in the past with restrictive eating, her posts sound to me like someone who has always been thin and is very afraid of gaining weight and will justify herself out of a paper bag to not have to eat high calorie foods herself. I think if OP wants to see more success she and her DH must be open to eating fish WITH butter sauce, meat with bernaise, fish AND steak at the same meal, burritos with sour cream, and lots of desserts so they model and experience similar changes to their DD.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How much does she weigh?

She is 4’6” and 53 lbs. Almost 12.

I know you are trying to do the right things, OP. Just want to comment that I have a son with similar stats. I think he was 4'6" at 11 and right around 55lbs. We never thought or were suggested to do anything like a feeding tube. In fact, we never were instructed to do anything to medicalize DS's eating/weight like you have been doing. He is now 12 and 3/4ths years. Last fall, he had a sinus infection. He had been around 61 lbs before he got it, but then wasn't eating well and dropped down to 59 lbs. (he was around 4" 11" at the time). Anyway, we got him some antibiotics and he got better quickly. He typically gains about 3 lbs per year. That's been true since he was about 4 yrs old.

I was thinking he would be in HS and not yet 70 lbs. (He's in 7th grade). Well, since the beginning of Dec. '18, when he got better from the sinus infection, to now, he has gained 10 lbs!!!!! This has not happened -- perhaps ever! Even when he was a baby, I don't know if he ever gained 10 lbs in one year! He is now right around 69 lbs. Prior to the last 4 mos, he has been the worst eater. As a toddler, he would eat nothing for lunch but ONE pancake with butter. That's it... for like a year! He never eagerly drank his bottles. He's been an anxious kid in some ways -- fears in general, now fear of flying, doesn't like roller coasters or dogs, and has always been very distracted at the table (hard to keep him there, takes 2 hrs to eat the simplest dinner every night for YEARS, etc.). He is 12.75, but if you saw him, you might think he is 9. When I see him with his legs and arms exposed, or if he is in undies, I always though he looks emaciated. Yet, I cannot get him to eat.

My sister is a registered dietician and has a PhD in Nutritional Epidemiology. When I visited her in Dec. and told her how low-weight he is, she was alarmed. We calculated his BMI -- and she was still alarmed. I gave her all the weight and height data I had for each dr's visit since DS was 2 yrs old. She was pushing me to DO SOMETHING!!. (Of course, DS is not on the growth charts.). Our pediatrician has never been alarmed. They have been concerned and talked to DS about needing to eat, but they have never suggested that we needed to take additional action. So, we didn't. My sister was critical of the pediatricians' lack of effort in regard to DS's nutrition. Well, I didn't really know what to do after my sister was pushing me. And I didn't want to cause DS additional anxiety about food/weight. So, I didn't do anything different that what we have done for the past 12 yrs.

Something must have changed, however. And it wasn't something I did. I think his exposure to middle school PE and locker rooms may have brought HIS attention to his size and general weakness compared to other kids. I noticed about a month ago that he had gained 5 lbs since his illness (so he was about 64 lbs). That was really good for him -- to gain 5 lbs (!!) in a few months! DS suggested that I should buy a new scale (b/c he doesn't like the one we have). I said "if you get to 70 lbs by the end of spring break, I'll buy you a new scale." He was totally down for it and he's on the way to doing it! This is beyond my comprehension -- that he is gaining weight (at least somewhat) and that HE actually cares enough to want to gain!

All I'm saying, OP, is that it's a fine line to know how much to push and when to not push b/c the pushing creates more stress about feeding, which could create more resistance. I totally feel for you. If your child's ability to engage with school is fine and she doesn't have an actual physical ailment that requires a feeding tube, I would be very hesitant. My son isn't on the growth charts yet, but he might grab on to the 5th percentile by the time he hits 13 yrs and 75 lbs. I think he might actually do it!!! If a child is fainting or having other problems where they express a distorted view of their body, then that would be reason for me to take additional measures.

I just wanted to give you a little hope that things CAN change. And that there are other kids out there would have similar numbers. I still believe in the saying, that you can lead a horse to water, but you can't make 'em drink. Of course, if the horse is in distress, then you hook up an IV! But, for me, I didn't have the desire to medicalize DS's low weight without some indication of actual distress.

I just wanted to point out that the social messages that a middle school boy receives about size and eating are VASTLY different from the social messages that a middle school girl receives.

I also think you were remiss not taking your sister's advice. Pediatricians miss stuff ALL THE TIME. My friend's pediatrician missed that her child had autism until he was 5 1/2 when a teacher caught it!

And what exactly should I have done??? I think you can create more problems pressuring a child to eat than to just let them be. And apparently, my strategy is working out o.k. since DS has gained 10 lbs in the past 4 mos. I count that as a huge success... and it did not involve sending him to therapy or inserting a feeding tube or even getting medication (which I did research). I wonder if OP has high anxiety and is projecting that onto her child and at least in part, exacerbating the daughter's anxiety about eating.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:How much does she weigh?

She is 4’6” and 53 lbs. Almost 12.

I know you are trying to do the right things, OP. Just want to comment that I have a son with similar stats. I think he was 4'6" at 11 and right around 55lbs. We never thought or were suggested to do anything like a feeding tube. In fact, we never were instructed to do anything to medicalize DS's eating/weight like you have been doing. He is now 12 and 3/4ths years. Last fall, he had a sinus infection. He had been around 61 lbs before he got it, but then wasn't eating well and dropped down to 59 lbs. (he was around 4" 11" at the time). Anyway, we got him some antibiotics and he got better quickly. He typically gains about 3 lbs per year. That's been true since he was about 4 yrs old.

I was thinking he would be in HS and not yet 70 lbs. (He's in 7th grade). Well, since the beginning of Dec. '18, when he got better from the sinus infection, to now, he has gained 10 lbs!!!!! This has not happened -- perhaps ever! Even when he was a baby, I don't know if he ever gained 10 lbs in one year! He is now right around 69 lbs. Prior to the last 4 mos, he has been the worst eater. As a toddler, he would eat nothing for lunch but ONE pancake with butter. That's it... for like a year! He never eagerly drank his bottles. He's been an anxious kid in some ways -- fears in general, now fear of flying, doesn't like roller coasters or dogs, and has always been very distracted at the table (hard to keep him there, takes 2 hrs to eat the simplest dinner every night for YEARS, etc.). He is 12.75, but if you saw him, you might think he is 9. When I see him with his legs and arms exposed, or if he is in undies, I always though he looks emaciated. Yet, I cannot get him to eat.

My sister is a registered dietician and has a PhD in Nutritional Epidemiology. When I visited her in Dec. and told her how low-weight he is, she was alarmed. We calculated his BMI -- and she was still alarmed. I gave her all the weight and height data I had for each dr's visit since DS was 2 yrs old. She was pushing me to DO SOMETHING!!. (Of course, DS is not on the growth charts.). Our pediatrician has never been alarmed. They have been concerned and talked to DS about needing to eat, but they have never suggested that we needed to take additional action. So, we didn't. My sister was critical of the pediatricians' lack of effort in regard to DS's nutrition. Well, I didn't really know what to do after my sister was pushing me. And I didn't want to cause DS additional anxiety about food/weight. So, I didn't do anything different that what we have done for the past 12 yrs.

Something must have changed, however. And it wasn't something I did. I think his exposure to middle school PE and locker rooms may have brought HIS attention to his size and general weakness compared to other kids. I noticed about a month ago that he had gained 5 lbs since his illness (so he was about 64 lbs). That was really good for him -- to gain 5 lbs (!!) in a few months! DS suggested that I should buy a new scale (b/c he doesn't like the one we have). I said "if you get to 70 lbs by the end of spring break, I'll buy you a new scale." He was totally down for it and he's on the way to doing it! This is beyond my comprehension -- that he is gaining weight (at least somewhat) and that HE actually cares enough to want to gain!

All I'm saying, OP, is that it's a fine line to know how much to push and when to not push b/c the pushing creates more stress about feeding, which could create more resistance. I totally feel for you. If your child's ability to engage with school is fine and she doesn't have an actual physical ailment that requires a feeding tube, I would be very hesitant. My son isn't on the growth charts yet, but he might grab on to the 5th percentile by the time he hits 13 yrs and 75 lbs. I think he might actually do it!!! If a child is fainting or having other problems where they express a distorted view of their body, then that would be reason for me to take additional measures.

I just wanted to give you a little hope that things CAN change. And that there are other kids out there would have similar numbers. I still believe in the saying, that you can lead a horse to water, but you can't make 'em drink. Of course, if the horse is in distress, then you hook up an IV! But, for me, I didn't have the desire to medicalize DS's low weight without some indication of actual distress.

I just wanted to point out that the social messages that a middle school boy receives about size and eating are VASTLY different from the social messages that a middle school girl receives.

I also think you were remiss not taking your sister's advice. Pediatricians miss stuff ALL THE TIME. My friend's pediatrician missed that her child had autism until he was 5 1/2 when a teacher caught it!

And what exactly should I have done??? I think you can create more problems pressuring a child to eat than to just let them be. And apparently, my strategy is working out o.k. since DS has gained 10 lbs in the past 4 mos. I count that as a huge success... and it did not involve sending him to therapy or inserting a feeding tube or even getting medication (which I did research). I wonder if OP has high anxiety and is projecting that onto her child and at least in part, exacerbating the daughter's anxiety about eating.

No one is saying you should have given him therapy or a feeding tube or medication. Instead of researching options, you could have asked your pediatrician for a referral to a specialist to see if there was something going on with him.

I think you missed the posts by people who said that their doctors have told them that their kids are not on target to reach their genetic potential height because they did not consume enough calories to grow. Please don't say that OP has high anxiety and is projecting that onto her child - her child has been diagnosed by her medical team as NOT GROWING because she isn't getting enough calories. It is mean to turn around and blame OP for being worried about it. Any parent would be worried about that.

[Anonymous]

OP, I've been following this thread since the start and have mostly stayed out because I have boys who are at the opposite end of the growth spectrum. But I wanted to point out a couple of things that struck me as someone who has had to talk to doctors about exceptional growth in kids:

1) You emphasize that your DD has a genetic propensity for late puberty. That could be a factor for her but genetic propensity does not mean that she is destined to arrive at puberty late. You said that her doctors estimate that she is still years away from puberty; that is highly unusual for an 11 or 12yo girl - it effectively means she is starting puberty after most girls finish. You also mentioned that your DD is several years bone-delayed, which means that the delayed puberty appears to be a function of insufficient calories rather than genetics.

2) Your emphasis on family traits downplayed another important factor - she has an immediate family member who suffered from a life-threatening eating disorder. You mentioned that only a couple of pages into this tread, as an offhand comment (BTW) about why your daughter may be motivated to avoid hospitalization etc. But there are more studies around genetics and eating disorders that show strong correlations between having a family member with an eating disorder and developing one yourself. In other words, the hereditary factor you should be focused on is not late puberty but ED propensity. Your daughter has a higher risk level than many other kids, which means that you need to approach the threat of ED much more seriously.

3) I don't know you, and you've been exceptionally patient in responding to comments here, some of which aren't always gentle. But you need to be aware that your language here seems a bit cavalier in places: the 'dancer's build' comment, repeated comments that this doesn't appear serious and that you're trying to avoid an ED in the future. Your DD has an eating disorder NOW and she doesn't have a dancer's build - she has the build of someone who is not consuming enough calories.

I'm not pointing this out to shame or guilt you or your DD - she has an illness and it's NOT your fault. But kids w/disordered thinking can interpret perfectly reasonable language in ways that are skewed by their illness. You should be very thoughtful and deliberate about what signals you're sending. I have friends whose DD suffered an ED at a very young age and it was surreal to be around them and hear them say things that were so obviously unhelpful to her situation (both parents were into clean eating and would gasp about someone eating half a bagel at brunch.)

[Anonymous]

OP here and it seems I can’t stay away from this thread. I’ll admit I was feeling overwhelmed and needed a break. Either I’m cavalier about DD’s condition or over anxious and projecting my anxieties onto her.

In one year we’ve seen three pediatric endocrinologists, two pediatric gastroenterologists, our primary care pediatrician to review results twice, weekly therapy sessions to manage anxiety created by all this (and/or contributing to it), and regular checkins with a dietician to help her boost her calories and examine her nutritional needs. I’ve been told she’s fine, just a late bloomer. I’ve been told to relax, let her be. Consider a feeding tube. Wait and see.

All of her doctors are aware of her cousin’s medical history with anorexia. She has been questioned extensively about anxiety concerning food, body image, etc., and no one has mentioned an eating disorder. In fact, her dietician, psychologist, and endocrinologist have all commented on her confidence and positive self image in spite of all of this. I’m starting to suspect ARFID, thanks to one poster on this board, and will explore that, but I’m not a doctor so can’t really say. DD is not a picky eater, but she meets some of the other criteria (inability to eat more than a few bites, fear of vomiting or choking). She clearly needs more help with her anxiety.

One new update: I’ve found a new pediatrician who we will see tomorrow. She’s highly recommended by parents on the special needs thread and by a friend whose college-age daughter suffers from an eating disorder. I am hopeful that she will be able to help us manage DD’s complicated care and hopefully protect whatever healthy self image she has left.

I don’t know what else to say. I don’t think I’m in denial. I don’t think I’m crazy or neurotic like some have suggested. I am trying to process conflicting advice by medical experts, posters who have experiences to share, and others who are quick to judge a mother who is desperate to help her child. Some feel I haven’t done enough. Some feel I’ve done too much. As hard as it’s been to sift through the blame and scrutiny, I am grateful for the generosity and insight. I’m much further along today than I was a week ago.

Oh, and DD ate more in the past three days than I can remember. Apparently, she loves Panda Express

[Anonymous]

I think the anxiety is being hugely overlooked here. I would be shocked if the anxiety was the result of all this testing and not a massively precipitating factor of all this happening in the first place.

[Anonymous]

OP, I'm the parent of a child who had ARFID. He dropped in BMI percentiles from 25th% (normal for him throughout childhood) to less than 1% It was NOT anorexia. But the treatment was to get more calories into him, within what he could accept in terms of texture and taste.

His pediatrician told me not to worry, relax, don't be the food police etc too. Switch to whole milk and push the avocados etc. Useless. Until it became clear that he wasn't gaining weight and wasn't eating, and then she had absolutely no advice except to refer me to an eating disorder therapist and try to convince him to eat more foods.

Once I realized the seriousness and severity of his malnourishment, I stopped him from all exercise. No Boy Scout hikes or swim events or kayaking overnights. No walking to the bus stop (which for us was almost a mile.) He had to focus on refeeding. My comments to you about stopping ballet are coming from experience, and if I seem at all harsh or angry, it isn't with you at all. It is with your doctors who unfortunately sound a lot like my child's doctor and the doctors of so many people I know who have had similar experiences. For some reason doctors do not seem to take lack of calories seriously until it is almost too late. (They seem so fixed on preventing obesity and kids snacking on junk food that as long as your kid tells them he's eating broccoli and drinking water instead of juice they are happy.)

I got the best advice in terms of increasing calories in the diet without filling up (high calorie/low footprint) from a discussion forum for parents of kids with eating disorders called aroundthedinnertable.

The parents there mostly deal with diagnosed anorexia. There are parents of young children as well. Some of the young children have what is called atypical anorexia. This is where they aren't eating enough, but don't have the body dysmorphia issues that occurs more typically in later teen years. It's not always easy to tease out whether an issue is anorexia, or ARFID, or atypical anorexia.. but the treatment is the same -- more calories.

There is one particular parent who used to post on the discussion forum and her child reminds me a LOT of your child's story. I don't know if you would be interested in reading it but here's her most recent discussion:

https://www.aroundthedinnertable.org/post/census-poll-please-reply-below-if-your-kid-is-the-subtype-of-arfid-that-is-10081248?pid=1308034008

[Anonymous]

Anonymous wrote:
Oh, and DD ate more in the past three days than I can remember. Apparently, she loves Panda Express

That's fantastic! One thing you can do to get more calories in without filling up on fiber is to mix in 1 T oil (maybe sesame for Asian food?) in with 1 C of rice or fried rice. Every T of oil is about 120 calories.

Look for high calorie versions of every food you feed her. Liberte yogurt is 230 calories for a half a cup of yogurt and you can mix in another T of oil to get it up to 350 calories.

[Anonymous]

Thanks 21:29. That’s very helpful. I will bring this up with our new pediatrician tomorrow.

[Anonymous]

Anonymous wrote:

Anonymous wrote:
Oh, and DD ate more in the past three days than I can remember. Apparently, she loves Panda Express

That's fantastic! One thing you can do to get more calories in without filling up on fiber is to mix in 1 T oil (maybe sesame for Asian food?) in with 1 C of rice or fried rice. Every T of oil is about 120 calories.

Look for high calorie versions of every food you feed her. Liberte yogurt is 230 calories for a half a cup of yogurt and you can mix in another T of oil to get it up to 350 calories.

Thanks!

[Anonymous]

OP, I really don't understand your latest post, specifically the statement that all the many doctors and specialists you've seen in the past year have told you that your DD is fine and just a late bloomer.

That's completely at odds with previous statements you've made on this thread, for example on page 2: "Her team at NIH concluded that her bone delay is most likely a result of “insufficient caloric intake." It's also contradicted by the very conversation that precipitated your original post, the suggestion by her dietician who is part of her medical team at Childrens' that you may need to consider a feeding tube.

So which is the correct version -- a fine late bloomer or a child whose growth is significantly delayed by insufficient nutrients?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:12:04 - sorry, but our experience has been that most doctors do not know how to treat eating disorders (or even evaluate for them). We started seeing doctors when DD dropped from 103 down to 90. They asked her to try to eat more and told me good luck. DD nodded her head and then lost more weight. They monitored her continued weight loss and did NOTHING until they forced her to stay in the hospital for three weeks.

I now know that the pediatrician should have put her on a strict eating program at 90 pounds. We could have recovered much better and faster. Instead she got as low as 82 pounds (and then we were sent straight from the GI to the hospital - yet they said nothing but “try to eat a little more” when she got down to 84 pounds) and we’re looking at long term bone issues.

I am 12:04 and your story is actually exactly why I'm saying OP needs to aggressively follow up with the doctors to correctly understand their take on the situation, and get an EXPERT second opinion on the eating disorder/feeding plan (any suggestions?) It sounds like Children's is headed down the same route of "fine, fine, fine OMG CRISIS!!" that you faced.

Where would you recommend seeking a second opinion? I thought Children's was among the best. Insurance is an issue for our family, so we will need to be sure we are covered. And yes, that is my fear about our team, especially since I feel our GI doc is done with us now that he has ruled out other causes.

I am still unclear whether DD has an eating disorder or not. Her therapist and dietician are monitoring this closely. They talk with her alone, with me alone, with us together. They do not feel she is withholding or wants to lose weight. If anything, her cousin's experience has made her terrified she will die if she can't eat more. That is why she cries. Not because she doesn't want to eat but because she knows she needs to and can't. She is scared of ending up in the hospital on a tube. She is frustrated with her body that she can't eat more. As I write this, I am starting to come around to the feeding tube idea. There's just so much stress and fear.

'm not opposed to seeking treatment at a place that specializes in eating disorders because the same approaches might be very helpful to us. I am a little concerned about this becoming a self-fulfilling prophesy, and I am prepared to battle DH and DD about it, but we will do what is necessary. Please send recommendations. I have left a message at Prosperity in Herndon - thanks for that - I don't think they take insurance. We are in MoCo but will travel.

The fact she cries about wanting to eat and is scared of the consequences of not eating but still can't make herself eat is the biggest proof you've given she has an eating disorder. It's not always about wanting to lose weight or wanting control. This isn't a Lifetime movie. It's not that simple. She HAS no control. If she literally cannot eat, there is something deeply wrong that needs to be addressed. It may not be a GI disease or illness but it is something. She is physically incapable of sustenance. That won't magically get better because she ate Panda Express 2 days in a row or made a deal with you to try. Op, you said it yourself. She can't eat. I don't see how the feeding tube is not your only option at this point.

[Anonymous]

I'm the poster from page 4 at 9:12.

re: ARFID... technically my son falls in this category where it describes "lack of interest." He is not a picky eater and will try anything. It's just a quantity issue. He wanted to grow and gain weight but just could not eat more. I don't know from reading where OP's child fits in this spectrum, but be aware that the vast majority of ARFID stuff out there is about food aversions and picky eating. Therapies for this kind of thing are not really appropriate for a child who doesn't have food aversions. Meanwhile, therapies for other eating disorders like anorexia involve enforcing a "strict eating regimen" (maudsley, magic plate) as mentioned above. I have real concerns about whether this is the right approach for volume-related ARFID either. P For a kid with volume issues who actually LIKES food and enjoys mealtime, just doesn't eat ENOUGH, this approach seems problematic and likely to cause issues that didn't previously exist.

I don't have a good solution, obviously, since we went with the feeding tube. Now he eats whatever he wants and enjoys it, and gets the needed extra calories at night. He isn't stressed at mealtime and neither are we.

I also want to push back on the suggestion to pull from activities. If the child is enjoying the activities, for heaven's sake make every effort to keep going. Even physical activities. Yes, they burn calories, but mental health and enjoying life is important. OP is talking about stress and fear...keep things as normal as possible! Pulling her from sports will add to the fear, add to the stress. She absolutely needs to continue doing the things she enjoys unless she actually physically can't.

good luck OP.

[Anonymous]

Anonymous wrote:OP, I really don't understand your latest post, specifically the statement that all the many doctors and specialists you've seen in the past year have told you that your DD is fine and just a late bloomer.

That's completely at odds with previous statements you've made on this thread, for example on page 2: "Her team at NIH concluded that her bone delay is most likely a result of “insufficient caloric intake." It's also contradicted by the very conversation that precipitated your original post, the suggestion by her dietician who is part of her medical team at Childrens' that you may need to consider a feeding tube.

So which is the correct version -- a fine late bloomer or a child whose growth is significantly delayed by insufficient nutrients?

DP. I read that post as saying that she has received conflicting opinions from various doctors. There have also been conflicting opinions in this thread. It's hard enough parenting when you know what the right thing to do is, it's even harder when you don't know what the right thing to do is.