Alarmingly underweight tween

[Anonymous]

A PP mentioned the Kennedy Krieger Institute. Have any of your DD's medical team mentioned it? If not you may want to ask if it's something they think could be of help:

https://www.kennedykrieger.org/patient-care/centers-and-programs/feeding-disorders-program/our-approach/outpatient-feeding-program

[Anonymous]

Anonymous wrote:How much does she weigh?

She is 4’6” and 53 lbs. Almost 12.

[Anonymous]

Anonymous wrote:A PP mentioned the Kennedy Krieger Institute. Have any of your DD's medical team mentioned it? If not you may want to ask if it's something they think could be of help:

https://www.kennedykrieger.org/patient-care/centers-and-programs/feeding-disorders-program/our-approach/outpatient-feeding-program

Thank you, I will look into this.

[Anonymous]

Anonymous wrote:

Anonymous wrote:How much does she weigh?

She is 4’6” and 53 lbs. Almost 12.

Her endocrinologists charted her genetic growth potential at 5’11”. Clearly she is far from that mark.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP. I think it is easy to minimize her situation as you read these anecdotal stories that people post.

Your daughter is under the care of a team of specialists at Children's because her situation is a little outside of the norm of just being a skinny kid.

I think in this situation you have to be open to every option. At the end of the day what you want is for your daughter to be healthy both physically and mentally. Put aside your initial reactions, keep an open mind and talk to the team about the pros and cons and potential outcomes of the various options you have on the table. Look at what the alternatives are but also at what point the alternatives are insufficient. For example you might make a plan that you won't do a feeding tube now but in 3 months you will assess 4 areas of nutrition and as long as she has made gains in all 4 areas then you will continue with the status quo. If she hasn't made gains, then you will revisit other options.

This, OP. If you've gotten to the point that you are seeing specialists at Children's, then this goes beyond what most of these posters are writing about in their own experiences. If an RD who is part of the care team has recommended this, you can be sure that it is in consultation with her pediatrician and other medical professionals. Please listen to what they say. I know a tube sounds horrible, but it's not the end of the world and she wouldn't be the first child treated in this situation. It's only temporary. But they are very concerned about her health and long term outcome at this point, or you wouldn't be hearing this.

+1

+2. I know this isn't what you wanted to hear, but you should listen to the team of professionals who know your child best, and if that suggestion is a feeding tube (temporary), then do what you have to do.

[Anonymous]

I am pp that posted DS was below 1% in weight and height at 13. Some nutritionists are great and some a crap. First one my DS saw was awesome.(Second made him cry at age 15 how insane she was). He had a 2,5 year bone age delay. Here is what worked. Eating, eating, eating. He was told that he will stay short even though his potential for height was around 5'10" per bone age x ray read by pediatric endo. So, we here is what I and he did. He liked my home made food but was told that nobody grew from eating soup(clear broth European soups) and bean soup and stew all the time. That is an appetizer. Once DS started eating he started to grow. After regular lunch, we bought a hamburger meal, pizza became a staple all the time. Two lunches, two dinners, one healthy and full of calories. Adding oil to everything, nutella on toast all the time. Protein powder that he hated mixed with what he would drink it with. Was this healthy? No, but he grew, he is now 5'11" and he could have been taller if he didn't spend till almost 14 not eating much at all. Just not into eating much. DH and I are both skinny, but not as tall as you and your DH. It is true that not eating enough will result in not reaching your height potential. I think DS would have ended taller if he ate like his friends did. Once in college he had a bit of a wake up call when he saw how other young men eat. He thought half a plate of Olive garden pasta was plenty, they ate 3 plates! DS also plays a sport so needed even more calories than non sporty teen, by play a sport I mean 2-4 hours per day! I wish I did something when he was ten, but was told not to worry, some kids grow later.
If I were you, I would try what we did first, and if that fails then think about the feeding tube.

[Anonymous]

Anonymous wrote:In fact, DD’s medical team believes that her anxiety is not an underlying chemical issue but a natural consequence of all the testing and stress about her eating and growth. Her symptoms only started when we began this medical odyssey. Before then she felt strong and healthy. Now she feels sick. That is why therapy rather than drugs is the treatment plan and why I am reluctant to add more medical invervention than is absolutely necessary. She is finally on board with taking this seriously, and her cooperation is essential.

As for an eating disorder, it is very much on my mind and we are on thin ice as it is. Eating disorders are about control. Right now she doesn’t have much. And if I put a tube down her throat against her will, there could be lasting repercussions. This is why her therapist, who specializes in eating disorders, advised caution. Somehow we need to shift this conversation from eating because I will hassle her until she does, to eating for her life. BTW, her 13-year-old cousin almost died last year from an eating disorder. She had a heart attack and spent a month in intensive care on a feeding tube. That is what we all associate with feeding tubes and the threat looms large with DD. She has promised to take ownership of this, and we’ve decided to give it 3 more months of concerted effort to reevaluate our options.

I greatly appreciate everyone’s advice and concern. It’s been a rollercoaster and hearing multiple perspectives has been helpful.

Wow, I'm so sorry, I hope the cousin is feeling better. So there is a family history of anorexia (which is a mental health disorder). I would continue to get additional opinions, both from doctors, nutritionists and psychologists specializing in anorexia. What a tough road.

[Anonymous]

Anonymous wrote:I am pp that posted DS was below 1% in weight and height at 13. Some nutritionists are great and some a crap. First one my DS saw was awesome.(Second made him cry at age 15 how insane she was). He had a 2,5 year bone age delay. Here is what worked. Eating, eating, eating. He was told that he will stay short even though his potential for height was around 5'10" per bone age x ray read by pediatric endo. So, we here is what I and he did. He liked my home made food but was told that nobody grew from eating soup(clear broth European soups) and bean soup and stew all the time. That is an appetizer. Once DS started eating he started to grow. After regular lunch, we bought a hamburger meal, pizza became a staple all the time. Two lunches, two dinners, one healthy and full of calories. Adding oil to everything, nutella on toast all the time. Protein powder that he hated mixed with what he would drink it with. Was this healthy? No, but he grew, he is now 5'11" and he could have been taller if he didn't spend till almost 14 not eating much at all. Just not into eating much. DH and I are both skinny, but not as tall as you and your DH. It is true that not eating enough will result in not reaching your height potential. I think DS would have ended taller if he ate like his friends did. Once in college he had a bit of a wake up call when he saw how other young men eat. He thought half a plate of Olive garden pasta was plenty, they ate 3 plates! DS also plays a sport so needed even more calories than non sporty teen, by play a sport I mean 2-4 hours per day! I wish I did something when he was ten, but was told not to worry, some kids grow later.
If I were you, I would try what we did first, and if that fails then think about the feeding tube.

This gives me so much hope, thank you! Like you, I was told repeatedly not to worry, including by DD’s pediatrician, my parents and in-laws who were used to skinny late bloomers, and even DH. I was painted as the neurotic mother who would give my daughter a complex. So I tried to relax and then a friend, who happens to be a pediatric endocrinologist, sat me down and told me it was time to start testing. At the same time, DD’s ballet school told me that her body was at risk of injury because she is so thin. That was a wake up call too. Then my niece almost died from starvation and I couldn’t let my friends and family tell me I was imagining a problem. I also wish I had started earlier. I appreciate hearing your journey so much and I’m so glad to know that your son is doing well. BTW, constitutional growth delay also runs in our family. DD’s sisters didn’t get their periods until 16/17. His grandmother was 19. So hopefully we still have some time to turn this around.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I am pp that posted DS was below 1% in weight and height at 13. Some nutritionists are great and some a crap. First one my DS saw was awesome.(Second made him cry at age 15 how insane she was). He had a 2,5 year bone age delay. Here is what worked. Eating, eating, eating. He was told that he will stay short even though his potential for height was around 5'10" per bone age x ray read by pediatric endo. So, we here is what I and he did. He liked my home made food but was told that nobody grew from eating soup(clear broth European soups) and bean soup and stew all the time. That is an appetizer. Once DS started eating he started to grow. After regular lunch, we bought a hamburger meal, pizza became a staple all the time. Two lunches, two dinners, one healthy and full of calories. Adding oil to everything, nutella on toast all the time. Protein powder that he hated mixed with what he would drink it with. Was this healthy? No, but he grew, he is now 5'11" and he could have been taller if he didn't spend till almost 14 not eating much at all. Just not into eating much. DH and I are both skinny, but not as tall as you and your DH. It is true that not eating enough will result in not reaching your height potential. I think DS would have ended taller if he ate like his friends did. Once in college he had a bit of a wake up call when he saw how other young men eat. He thought half a plate of Olive garden pasta was plenty, they ate 3 plates! DS also plays a sport so needed even more calories than non sporty teen, by play a sport I mean 2-4 hours per day! I wish I did something when he was ten, but was told not to worry, some kids grow later.
If I were you, I would try what we did first, and if that fails then think about the feeding tube.

This gives me so much hope, thank you! Like you, I was told repeatedly not to worry, including by DD’s pediatrician, my parents and in-laws who were used to skinny late bloomers, and even DH. I was painted as the neurotic mother who would give my daughter a complex. So I tried to relax and then a friend, who happens to be a pediatric endocrinologist, sat me down and told me it was time to start testing. At the same time, DD’s ballet school told me that her body was at risk of injury because she is so thin. That was a wake up call too. Then my niece almost died from starvation and I couldn’t let my friends and family tell me I was imagining a problem. I also wish I had started earlier. I appreciate hearing your journey so much and I’m so glad to know that your son is doing well. BTW, constitutional growth delay also runs in our family. DD’s sisters didn’t get their periods until 16/17. His grandmother was 19. So hopefully we still have some time to turn this around.

Yes, you definitely do! Stay optimistic and have her eat. Whatever it takes. You are starting earlier than we did. DS grew an inch at 19. Mothers know.

[Anonymous]

Sorry I said DD’s sisters were late bloomers, I meant DH’s sisters DD’s paternal aunts). DD is an only child.

[Anonymous]

OP here and I have to say that this thread has warmed my heart. I know DCUM sometimes gets a bad rep for being harsh, especially with delicate topics like this, but I am so encouraged by the humanity and compassion expressed here. Thank you.

[Anonymous]

I was with a woman for several years who has a dd much like yours OP. When I met the little girl she was 7 and weighed 22lbs and wore a size 18-24mos clothing. She was very, very small and at age 8 it was recommended she have a feeding tube as she was diagnosed as failure to thrive.
Sarah (the little girl) would eat in a day perhaps 10 grapes and a cracker and be full for the entire day. Sarah also suffers from anxiety and because she had always eaten so little to begin with and then even less than that, her stomach felt full with almost no food. Sarah’s mom was in agreement about the feeding tube but Sarah begged and pleaded not to get one. So she didn’t, and at one point stopped eating entirely. She had been so chronically malnourished that her brain just stopped signaling that her body was in need of food.
When she was almost 9 Sarah only weighed 25lbs. But she also started therapy- talk therapy as well as physical therapy for possible sensory issues. It was a long, long road but eventually the therapist convinced Sarah’s mom to stop talking about food with Sarah. The therapist created a 100% hands off approach by mom. Sarah was in charge of her own body and that included food intake.
And within 6mos Sarah gained 10lbs. She’s going to be 13 this year and while still on the small side, Sarah weighs 67lbs. She’s menstruating (which can be a problem for chronically starved females), and has just started to get a little definition to her body, versus the very concave look she had before. She’s come a long way.
I say all of this to offer my experience with a very underweight child and that there is some hope and a light at the end of the tunnel.
I wish you and your dd well.

[Anonymous]

I have this child also. My son was 12, in the 4th percentile for height and weighed 52 lbs which was the .1% for BMI. Linear growth was completely stalled and they were saying he was on track to be 5 ft 2 as a final height. Genetic potential is 5'11". I was a skinny late bloomer, but this was beyond that by a lot.

We saw all kinds of specialists. Consensus was, he just doesn't eat enough. Not picky but just doesn't consume enough volume. (I still have a hard time accepting that, btw, but we were pretty thorough, so ..?)

We went with the feeding tube. I was really so struck by 5'2"...short is ok, but life for a 5'2" man is tough. The feeding tube is a big step, but it's been a huge relief. In 8 months he's put on almost 20 lbs, grown 3 inches. Now on track for 5'6" and hopefully that'll go up more. We don't even address what or how much he eats at any given time. For perspective, he's still only in the 5th percentile for BMI even with a 20lb gain. It's enough to support height growth though, apparently. Oh, and in general he is way less anxious and more cheerful. I think it's just health and weight gain, because we always tried not to overfocus on the eating.

I'm not saying you should do it, but wanted to share this experience. I do think finding another dietician is largely pointless. We've seen plenty and they never have anything new to say. Good luck.

[Anonymous]

Anonymous wrote:I was with a woman for several years who has a dd much like yours OP. When I met the little girl she was 7 and weighed 22lbs and wore a size 18-24mos clothing. She was very, very small and at age 8 it was recommended she have a feeding tube as she was diagnosed as failure to thrive.
Sarah (the little girl) would eat in a day perhaps 10 grapes and a cracker and be full for the entire day. Sarah also suffers from anxiety and because she had always eaten so little to begin with and then even less than that, her stomach felt full with almost no food. Sarah’s mom was in agreement about the feeding tube but Sarah begged and pleaded not to get one. So she didn’t, and at one point stopped eating entirely. She had been so chronically malnourished that her brain just stopped signaling that her body was in need of food.
When she was almost 9 Sarah only weighed 25lbs. But she also started therapy- talk therapy as well as physical therapy for possible sensory issues. It was a long, long road but eventually the therapist convinced Sarah’s mom to stop talking about food with Sarah. The therapist created a 100% hands off approach by mom. Sarah was in charge of her own body and that included food intake.
And within 6mos Sarah gained 10lbs. She’s going to be 13 this year and while still on the small side, Sarah weighs 67lbs. She’s menstruating (which can be a problem for chronically starved females), and has just started to get a little definition to her body, versus the very concave look she had before. She’s come a long way.
I say all of this to offer my experience with a very underweight child and that there is some hope and a light at the end of the tunnel.
I wish you and your dd well.

Thank you. DD’s therapist has also urged a hands off approach by me, which has helped her anxiety and improved her appetite some, but not enough. The feeding tube recommendation is at direct odds with this approach of allowing her to control what goes in her body and I fear will undo whatever progress she has made. Due to my lurking fear of an eating disorder down the road, I want to proceed with great caution.

[Anonymous]

Anonymous wrote:I have this child also. My son was 12, in the 4th percentile for height and weighed 52 lbs which was the .1% for BMI. Linear growth was completely stalled and they were saying he was on track to be 5 ft 2 as a final height. Genetic potential is 5'11". I was a skinny late bloomer, but this was beyond that by a lot.

We saw all kinds of specialists. Consensus was, he just doesn't eat enough. Not picky but just doesn't consume enough volume. (I still have a hard time accepting that, btw, but we were pretty thorough, so ..?)

We went with the feeding tube. I was really so struck by 5'2"...short is ok, but life for a 5'2" man is tough. The feeding tube is a big step, but it's been a huge relief. In 8 months he's put on almost 20 lbs, grown 3 inches. Now on track for 5'6" and hopefully that'll go up more. We don't even address what or how much he eats at any given time. For perspective, he's still only in the 5th percentile for BMI even with a 20lb gain. It's enough to support height growth though, apparently. Oh, and in general he is way less anxious and more cheerful. I think it's just health and weight gain, because we always tried not to overfocus on the eating.

I'm not saying you should do it, but wanted to share this experience. I do think finding another dietician is largely pointless. We've seen plenty and they never have anything new to say. Good luck.

Not the OP, but can you talk about the short and long term plans. How long do they think the tube will be in? What needs to happen for it to come out? How do they transition from tube to all calories by mouth? (and I'm assuming for most of you who have experience with tubes, this is some kind of button tube and not an NG?)