I know that OP has stepped away from the conversation, but I want to thank her for posting this as we are experiencing the same situation with our DS. And although some of the responses have been "not so kind", many have been constructive and helpful - for me.

Growth hormones are another possibility - they would build muscle and increase appetite.

Anonymous wrote:Has anyone suggested appetite stimulant meds? I would try that before a feeding tube.

Yes, I did. (The poster who also thinks a child with 0.1% BMI for age should not be exercising.) .

I suggest asking doctors about the antihistamine Periactin/Cyproheptadine.

Has anyone suggested appetite stimulant meds? I would try that before a feeding tube.

Anonymous wrote:

Anonymous wrote:
Are you her doctor? No.
Neither is the dietician. I don’t understand crowd sourcing any of this and I don’t understand citing what a dietician says- her doctor should be guiding you.

You do not need a medical degree to feed your child, and you do not need a medical degree to have common sense.

If a child is having difficulty eating enough calories to fuel her growth, and it has gotten to the point that experienced professionals are suggesting the use of tube feeding to get more nutrition into her, it is very sensible to have that child stop all non-essential calorie burning activities until she is able to eat enough calories to maintain and grow again.

That includes not walking or biking to school, not participating in recess or PE at school, and not participating in any recreational sports activities.

This is not punishment.

If a child has a broken leg, he can not use that leg for walking to school or playing football. The leg needs rest to get better.

If a child has a concussion, she cannot play sports or do certain physical activities. True, playing the sport may be an active, healthy social outlet and may be enjoyable and help relieve anxiety. You aren't withholding sports because you are punishing the child; you are allowing her to heal.

If a child cannot eat enough food to gain weight and it is a medical problem -- you do not make it harder for that child to get enough calories, even if the dance class is enjoyable and doesn't expend that many calories. She should also not be in PE or running around at recess time.

Dietitians are more trained on nutrition than are doctors. That is their function on the medical team

Duke has a good eating disorder clinic but it has a long waiting list and the entire family must go.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Why are you making fish for dinner when you know that your DD doesn't like it?

For most families, I completely 100% believe that a parent shouldn't cook to cater to a child's taste, and that kids should eat what their parents eat, but come on! Your child is in grave medical danger. This is nowhere close to a normal situation.

It stinks, I am sure, to have to think this way about every meal and every snack your family has, but you can't really afford to lapse here.

If you want to eat fish, eat it when she's at school. But at home, I would be making pizzas, tacos, or whatever food she might actually eat.

Also, please feed her right after the ballet class. Do you allow her to eat food in the car? Bring a milkshake for her to consume when you pick her up.

Yes I feed her right after class. Usually a heavy snack, breakfast sandwich from Starbucks, or quesadilla. We have snacks in the car but not always. That hS changed recently. I now keep protein bars and trail mix in the car always. We eat fish because it’s healthy and when we do, she gets to choose whatever protein we have on hand. She likes the choice. Usually leftover chicken, steak, eggs, or cheese. Sometimes a chicken pot pie or burrito. Yesterday she wanted cheese because she was still full from her snack. We don’t starve her so we can have fish. Jeez. But eating fish is modeling good behavior too even if she wants something else.

DP. I get that you are very concerned about your daughter's health, but I do wonder if you and her dad have some food control issues that she has sensed/internalized as she has grown up. Your diet sounds very healthy. Full stop. But it is also very controlled and no fun. Do you enjoy food at all? Maybe she needs to hear that food is more than fuel, that it is an important part of social interaction, a great way to learn about and enjoy other cultures. Most kids want to please their parents and if the messages around food have all been that it is "eat to love" not "live to eat" maybe that has created some anxiety about not eating in ways you (her parents) wouldn't approve of. Maybe she's telling her docs her that her favorite foods are the ones she thinks will keep you happy. Maybe needs to have permission to enjoy food more.

Wow, this is a great observation OP should consider.

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.

One of fun things I used to do and still do(older kids) is to go for a drive and get ice cream. Like a drive to some rural small town,(not too far) check their local ice cream shop, or a field where we pick berries and they have home made ice cream. There is some farm like that north of Damascus, can't remember the name. We all get huge scoops of ice cream. After practice or competitions I would get kids ice cream at McDonalds or similar. It became a thing with my then underweight DS to get him ice cream after each game. Then nutritionists told us that Mc cone has less than 150 calories and to get him M&Ms Mcflurry. He could never eat the whole thing, but he tried till he was almost there. And this was after two hamburgers, that he also tried to eat. Rarely ate both.

Anonymous wrote:

Anonymous wrote:Why are you making fish for dinner when you know that your DD doesn't like it?

For most families, I completely 100% believe that a parent shouldn't cook to cater to a child's taste, and that kids should eat what their parents eat, but come on! Your child is in grave medical danger. This is nowhere close to a normal situation.

It stinks, I am sure, to have to think this way about every meal and every snack your family has, but you can't really afford to lapse here.

If you want to eat fish, eat it when she's at school. But at home, I would be making pizzas, tacos, or whatever food she might actually eat.

Also, please feed her right after the ballet class. Do you allow her to eat food in the car? Bring a milkshake for her to consume when you pick her up.

Yes I feed her right after class. Usually a heavy snack, breakfast sandwich from Starbucks, or quesadilla. We have snacks in the car but not always. That hS changed recently. I now keep protein bars and trail mix in the car always. We eat fish because it’s healthy and when we do, she gets to choose whatever protein we have on hand. She likes the choice. Usually leftover chicken, steak, eggs, or cheese. Sometimes a chicken pot pie or burrito. Yesterday she wanted cheese because she was still full from her snack. We don’t starve her so we can have fish. Jeez. But eating fish is modeling good behavior too even if she wants something else.

DP. I get that you are very concerned about your daughter's health, but I do wonder if you and her dad have some food control issues that she has sensed/internalized as she has grown up. Your diet sounds very healthy. Full stop. But it is also very controlled and no fun. Do you enjoy food at all? Maybe she needs to hear that food is more than fuel, that it is an important part of social interaction, a great way to learn about and enjoy other cultures. Most kids want to please their parents and if the messages around food have all been that it is "eat to love" not "live to eat" maybe that has created some anxiety about not eating in ways you (her parents) wouldn't approve of. Maybe she's telling her docs her that her favorite foods are the ones she thinks will keep you happy. Maybe needs to have permission to enjoy food more.

OP - Is there anyway at school that you can be sure your daughter is eating as she says so? Could there be visual monitoring of some sort at least some of the days without her knowing it? I do think there needs to be closer FollowUp on her physical stats as well as her mental health than 3 months. Summer could be a less pressured time for her to use a feeding tube if recommended and you to adjust to it, too. You do have to consider carefully activity level in burning up the limited calories she is taking in. Can you find her fun outlets for the summer which are not that physically draining? Has her team recommended any sort of a fitness routine to build her muscle mass? You are correct that DD needs to buy in to what is suggested.

Anonymous wrote:
Are you her doctor? No.
Neither is the dietician. I don’t understand crowd sourcing any of this and I don’t understand citing what a dietician says- her doctor should be guiding you.

You do not need a medical degree to feed your child, and you do not need a medical degree to have common sense.

If a child is having difficulty eating enough calories to fuel her growth, and it has gotten to the point that experienced professionals are suggesting the use of tube feeding to get more nutrition into her, it is very sensible to have that child stop all non-essential calorie burning activities until she is able to eat enough calories to maintain and grow again.

That includes not walking or biking to school, not participating in recess or PE at school, and not participating in any recreational sports activities.

This is not punishment.

If a child has a broken leg, he can not use that leg for walking to school or playing football. The leg needs rest to get better.

If a child has a concussion, she cannot play sports or do certain physical activities. True, playing the sport may be an active, healthy social outlet and may be enjoyable and help relieve anxiety. You aren't withholding sports because you are punishing the child; you are allowing her to heal.

If a child cannot eat enough food to gain weight and it is a medical problem -- you do not make it harder for that child to get enough calories, even if the dance class is enjoyable and doesn't expend that many calories. She should also not be in PE or running around at recess time.

Anonymous wrote:To OP, my heart breaks for your DD and you. So much info in these replies overwhelmed me, I can't imagine how you feel.

I have a son (15) who like your daughter, struggles to eat the amount of calories necessary to gain weight. He gets full fast. He was a preemie and I've dealt with this his entire life. His bone age is about a year behind. When he was your DDs age is was 2 years behind. He is not done growing and his growth plates are still open. I feel your anxiety and shame that no matter how much we've tried, we have skinny little kids. My son does not have an eating disorder. He eats a variety of foods just not the volume that a teenage boy normally eats. DH and I were skinny kids. Both of us were also late bloomers. My mother was always hand wringing over how little I ate. I lived on pasta, whole milk and chocolate cream cookies.

DS knows he needs more calories and he tries. It's so hard. That shake after practice is filling (for him). I'm not sure if your DD is on a path to an eating disorder. Her anxiety appeared after the onslaught of testing and insanity. This compounds things because you now need to balance her emotional stability with her physical needs. You know your child. You describe her as healthy, bright, social and strong. I believe you!! My son is the same and also has amazing immunity despite having been preemie. Your DDs occasional dizziness may be from dehydration, so plenty of water. She's been tested and most concerns have been ruled out. Did they test for growth hormone deficiency? The accurate test is done over many hours with blood drawn at 3 intervals. Has her pituitary been checked? Yes there's bloodwork but an MRI of head also indicates if there is something not showing in bloodwork. Does she have an aversion to certain food textures? DS does sometimes. There may be a mild sensory issue. Something to think about. Also, another poster mentioned an appetite stimulant and DSs endocrinologist suggested Cyproheptadine (it's no longer dispensed as periactin). I haven't tried it, so can't report. I'm considering it. Kids in general don't eat much at school. DS scrambles to eat in HS. He so busy, even during a 30 minute lunch period. This may be TMI...but in MS my DS would walk his best friend, a girl, to the bathroom and sometimes be late for his next class. She wanted him to wait outside bathroom because she had to poop and hated going in school. He added a level of security, crazy right? Does she avoid eating at school because she doesn't want to "have to go" at school? Some kids don't regulate to a certain time of day for a BM until a bit older than 11.

I feel like presenting the idea of a night tube would be pretty upsetting to her especially if she's crying for fear of a hospital stay, like her cousin. This is scary stuff for an 11 year old. Give it a month with a focus on substantial calories. Let her help with the process. I would make sure that your current team is in fact sharing info. It's one thing for the dietician and psych to suggest tube, but make sure pediatrician and endo/gastro are also on board (if it comes to that). Once DD adjust to this new crisis and her anxiety lessens, talk to her about the tube if that's the decision. She may be relieved to try it or not. I wouldn't burden her with it until you've exhausted the one month plan.

This is long enough, sorry. Just trying to comfort you in the midst of rapid fire in this thread. You are here, you matter and everyone should handle with special care if you are offering advice. Do it from a place of knowledge. Do not berate this mom! Keep me posted OP. Take good care of that beautiful girl and yourself. You'll get to the other side. You're doing the right thing!

Bless you and others offering encouragement. I promised to disengage, but wanted to give one more thanks. I will post back with an update after some time.

To OP, my heart breaks for your DD and you. So much info in these replies overwhelmed me, I can't imagine how you feel.

I have a son (15) who like your daughter, struggles to eat the amount of calories necessary to gain weight. He gets full fast. He was a preemie and I've dealt with this his entire life. His bone age is about a year behind. When he was your DDs age is was 2 years behind. He is not done growing and his growth plates are still open. I feel your anxiety and shame that no matter how much we've tried, we have skinny little kids. My son does not have an eating disorder. He eats a variety of foods just not the volume that a teenage boy normally eats. DH and I were skinny kids. Both of us were also late bloomers. My mother was always hand wringing over how little I ate. I lived on pasta, whole milk and chocolate cream cookies.

DS knows he needs more calories and he tries. It's so hard. That shake after practice is filling (for him). I'm not sure if your DD is on a path to an eating disorder. Her anxiety appeared after the onslaught of testing and insanity. This compounds things because you now need to balance her emotional stability with her physical needs. You know your child. You describe her as healthy, bright, social and strong. I believe you!! My son is the same and also has amazing immunity despite having been preemie. Your DDs occasional dizziness may be from dehydration, so plenty of water. She's been tested and most concerns have been ruled out. Did they test for growth hormone deficiency? The accurate test is done over many hours with blood drawn at 3 intervals. Has her pituitary been checked? Yes there's bloodwork but an MRI of head also indicates if there is something not showing in bloodwork. Does she have an aversion to certain food textures? DS does sometimes. There may be a mild sensory issue. Something to think about. Also, another poster mentioned an appetite stimulant and DSs endocrinologist suggested Cyproheptadine (it's no longer dispensed as periactin). I haven't tried it, so can't report. I'm considering it. Kids in general don't eat much at school. DS scrambles to eat in HS. He so busy, even during a 30 minute lunch period. This may be TMI...but in MS my DS would walk his best friend, a girl, to the bathroom and sometimes be late for his next class. She wanted him to wait outside bathroom because she had to poop and hated going in school. He added a level of security, crazy right? Does she avoid eating at school because she doesn't want to "have to go" at school? Some kids don't regulate to a certain time of day for a BM until a bit older than 11.

I feel like presenting the idea of a night tube would be pretty upsetting to her especially if she's crying for fear of a hospital stay, like her cousin. This is scary stuff for an 11 year old. Give it a month with a focus on substantial calories. Let her help with the process. I would make sure that your current team is in fact sharing info. It's one thing for the dietician and psych to suggest tube, but make sure pediatrician and endo/gastro are also on board (if it comes to that). Once DD adjust to this new crisis and her anxiety lessens, talk to her about the tube if that's the decision. She may be relieved to try it or not. I wouldn't burden her with it until you've exhausted the one month plan.

This is long enough, sorry. Just trying to comfort you in the midst of rapid fire in this thread. You are here, you matter and everyone should handle with special care if you are offering advice. Do it from a place of knowledge. Do not berate this mom! Keep me posted OP. Take good care of that beautiful girl and yourself. You'll get to the other side. You're doing the right thing!

Anonymous wrote:

Anonymous wrote:It sounds like you have a good plan for moving forward, OP! We are all wishing you the best of luck. I hope you'll check back in at a later point.

THIS!!! We are rooting for you, OP!

+1 Good luck OP!