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?

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.

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.

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

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.

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!

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.