Anonymous wrote:No I haven't. Your post might trigger a lot of people projecting their shit and being judgemental. I sincerely hope not and hope you get good advice. Sorry op

x1000

Anonymous wrote:My daughter is not overweight, but has been on a declining curve for height since she was 5 years old. She went from 75 to 10%, she is now 11. She also has had every test at Children's with specialists. She is only 1 year delayed in bone growth and I read that children with delayed bone grows don't reach their expected height, which is tiny as it is. I'm at a loss about what to do, and so is our pediatrician. My friend is stationed in Argentina, and he daughter was given growth hormones. I asked, but the cost is prohibitive in the US, plus, they won't give them to my daughter unless she falls of the curve 0% or less.

Meant to say she is not underweight.

My daughter is not overweight, but has been on a declining curve for height since she was 5 years old. She went from 75 to 10%, she is now 11. She also has had every test at Children's with specialists. She is only 1 year delayed in bone growth and I read that children with delayed bone grows don't reach their expected height, which is tiny as it is. I'm at a loss about what to do, and so is our pediatrician. My friend is stationed in Argentina, and he daughter was given growth hormones. I asked, but the cost is prohibitive in the US, plus, they won't give them to my daughter unless she falls of the curve 0% or less.

Anonymous wrote:

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.

+3 OP I feel for you. I know you came here wanting support and I think you have mostly received it (rare for DCUM) but nobody on this thread except for maybe 11:48 has dealt with what you are dealing with. You've gone to a team of experts and they are telling you your daughter needs a feeding tube. They are telling you your daughter is in danger. It's certainly understandable to question and have hesitation, but you need to be questioning them not an anonymous message board with people trying to give you recipes and I was a small kid too stories.

I would start by asking what they think are the risks if you don't do the feeding tube and how urgent they think it is i.e. can you let your daughter wait and try to "take more ownership?" Is there something that makes you think she will when she hasn't before? I mean this kindly but it seems like you might be burying your head in the sand a bit on that. If you still have concerns after a tough conversation with your medical team, how about getting a second opinion? Where is the best children's hospital for your daughter's condition? They should have contacts there and can send your case files for review. If you are up for it, go in person. Good doctors aren't defensive about getting a second opinion from other top doctors. Many welcome it as an opportunity to collaborate with colleagues on treatment of interesting/difficult cases.

Best wishes to you and your DD. Sometimes you just have to wakeup and do the best you can each day. Hugs.

Anonymous wrote:

Anonymous wrote:
Are you OP? My one concern is your mention of ballet. It is a very visual art form, very perfectionistic (which can exacerbate anxiety), very focused on the look of the body.. I also realize it is an art form that is very soothing to anxiety - both things can be true at the same time. So just proceed cautiously.

Because ballet can be intense and burn a lot of calories, this is an example where I would force the meal. She simply has to eat a sufficient high calorie meal before she dances or she has to miss class that day. Don't let her push the meal off until after class when her muscles feel tight and she is ready to relax.

DP. This is a kind way of saying that ballet gives girls eating disorders. Maybe not all girls but nearly all of them.

This is OP and a former professional dancer. We are proceeding with caution. Fortunately, DD's school is hyper aware of the potential for eating disorders, anxiety, and perfectionism in dance - to the point of requiring all dancers to participate in wellness programs with a focus on building healthy bodies and strong self esteems. Fortunately, the dance world is very different than it was when I was younger and eating disorders were a part of the culture. Reputable schools take this very seriously now, and they should. Dance is a good motivator for her to eat. She wants to be strong.

My DS was at the 1st percentile BMI pretty much his whole life. After recently adding a medication with weight gain as a known side effect, he went up to the 5th percentile and is actually ON the lower bounds of healthy growth for the first time.

DS has feeding issues related to ASD. He eats from all food groups but very limited variety and very limited amounts. He may take a couple of bites and say he's full. He is on medication for issues related to ASD, NOT because of his weight issues. The medication requires regular blood draws to watch for metabolic side effects, so it's definitely something to be taken seriously.

Overall, his ped is not concerned because he continually tracked in the 90+ percentile for height so it's not affecting his bone growth.

However, in your situation, your DD is clearly not tracking on her growth curve. Making food the center of your family's life is only going to increase your DD's anxiety, but the only way to address her malnutrition is by making food the center of your family's life .. or use a G tube. I've known a family who's child needed a G tube for FTT and then eventually weaned off of it and had it removed. It's not a life sentence but it can be what gives her body the nutrition that she needs and the space your family needs to build an ordered relationship with food. I wouldn't jump straight into it, but seek out a second opinion and remain open that your daughter may NEED something that you would prefer to avoid.

I know it's a different situation, but I empathize with your stress. We spent a very long time avoiding an emotional disability label for my DS. Yet here we are, 5 years later and he's thriving in a school for kids with emotional disability. His educational career would certainly be better if he didn't need to be where he is, but the fact is that it is what he needs and he's the better for it. Good luck and best wishes

My DD is not quite like yours, but also very short and thin. What I finally realized is that she does best eating 5 or 6 small meals a day. Eating a full meal feels to her how we would feel if we ate four full meals - it's just too big and uncomfortable.

Anonymous wrote:

Anonymous wrote:We have a small 10.5 year old. We have worked hard for 2 years and gotten her to around 53 inches, 60 pounds, by counting calories. She gained 10 pounds this year. We aim for 1600-1800 calories every day. It is hard but you put in calories and you grow. We have tried so hard to avoid a feeding tube. She has a complicated medical history. We were surprised at how little caloric intake she took in before we started writing it down. It is hard work but she is growing taller and gaining weight. Her BMI is now at the low end of normal finally. She is finally on the growth chart for height and weight. We supplement with carnation instant breakfast drink with whole milk at breakfast (we used to do heavy whipping cream). We do ice cream dessert at night. We have increased protein and fruit. We put a lot of cheddar cheese in her grilled cheese sandwiches. She eats baked chicken and rice a few times a week. She eats broccoli a few times a week.

If you aren't tracking her calories, you may not realize how few calories she is eating. Brain development requires significant caloric intake. The opportunity for brain development is not unlimited. If you can't get in the calories everyday, you should do a feeding tube.

10 lbs is amazing! Honestly, 53 inches and 60 lbs doesn't sound that small to me. My DD is almost 9 - 49 inches and 46 lbs. We aren't quite where the OP is but it's not out of the realm of possibility. Can you or others share what you make for lunch for them to take to school? Those are long days and I think that's where she lacks her calories. Thanks.

I’m the poster after you. Here’s what we send in for our daughter: we make 4 Oz raw ground beef (then cook it) + 1/2 cup jarred sauce (found a brand with 11.5 grams of fat per serving - the highest the store had). One cup cooked pasta. Mix together then put in thermos. Also 1/2 cup cottage cheese in Tupperware.

You can get accommodations that day that a teacher or counselor supervises her lunch to make sure she finishes each day. Alternatively, you can go in and supervise. What I learned is that this is no joke and there can be life long impacts on bone density, etc. Its worth it to stay on top of it get ahead on this.

My 13 year old has a complicated eating disorder and I want to share what I’ve learned.

1. Please read about ARFID. It is just dangerous as anorexia but has different causes.
2. A malnourished brain is not a logical brain. Malnourishment is likely also the cause of the occasional weakness or dizziness. Please take that seriously.
3. Therapy may not work on a malnourished brain. Weight restoration (or healthy weight achievement) comes first. Then the nourished brain can respond to therapy.
4. Please read about the Minnesota Study. Healthy men were malnourished and THEN they developed issues around eating.
5. I would get a second opinion from a GI who could diagnose failure to thrive. With a BMI that low, our GI would likely admit to the hospital for feeding on the spot.
6. F.E.A.S.T. is online and a great resource.
7. Stop thinking about this as does she or does she not have anorexia. She does not eat enough, in absence of a defined health issue, which means that for whatever reason, her eating is disordered.
8. Therapists aren’t perfect. I spent a lot of money on a therapist who said DD definitely didn’t have an eating disorder. Months later, we are seeing a wonderful nutritionist at Prosperity. DD has opened up to her. Turns out she was lying to the therapist and has been restricting her eating (and sneaking into my bathroom to weigh herself many times per day) since last summer.

But again, a malnourished brain isn’t logical. Please be the parent who takes control of her daughter’s health. She is a child. But in is great, but this is not her decision. Frankly, it’s unfair to her to put the responsibility/burden on her.

Wishing you strength. This is the hardest thing I’ve ever done.

Anonymous wrote:We have a small 10.5 year old. We have worked hard for 2 years and gotten her to around 53 inches, 60 pounds, by counting calories. She gained 10 pounds this year. We aim for 1600-1800 calories every day. It is hard but you put in calories and you grow. We have tried so hard to avoid a feeding tube. She has a complicated medical history. We were surprised at how little caloric intake she took in before we started writing it down. It is hard work but she is growing taller and gaining weight. Her BMI is now at the low end of normal finally. She is finally on the growth chart for height and weight. We supplement with carnation instant breakfast drink with whole milk at breakfast (we used to do heavy whipping cream). We do ice cream dessert at night. We have increased protein and fruit. We put a lot of cheddar cheese in her grilled cheese sandwiches. She eats baked chicken and rice a few times a week. She eats broccoli a few times a week.

If you aren't tracking her calories, you may not realize how few calories she is eating. Brain development requires significant caloric intake. The opportunity for brain development is not unlimited. If you can't get in the calories everyday, you should do a feeding tube.

10 lbs is amazing! Honestly, 53 inches and 60 lbs doesn't sound that small to me. My DD is almost 9 - 49 inches and 46 lbs. We aren't quite where the OP is but it's not out of the realm of possibility. Can you or others share what you make for lunch for them to take to school? Those are long days and I think that's where she lacks her calories. Thanks.

We have a small 10.5 year old. We have worked hard for 2 years and gotten her to around 53 inches, 60 pounds, by counting calories. She gained 10 pounds this year. We aim for 1600-1800 calories every day. It is hard but you put in calories and you grow. We have tried so hard to avoid a feeding tube. She has a complicated medical history. We were surprised at how little caloric intake she took in before we started writing it down. It is hard work but she is growing taller and gaining weight. Her BMI is now at the low end of normal finally. She is finally on the growth chart for height and weight. We supplement with carnation instant breakfast drink with whole milk at breakfast (we used to do heavy whipping cream). We do ice cream dessert at night. We have increased protein and fruit. We put a lot of cheddar cheese in her grilled cheese sandwiches. She eats baked chicken and rice a few times a week. She eats broccoli a few times a week.

If you aren't tracking her calories, you may not realize how few calories she is eating. Brain development requires significant caloric intake. The opportunity for brain development is not unlimited. If you can't get in the calories everyday, you should do a feeding tube.

To pp who said problem is the height and people are talking about weight. I am pp of DS who grew after 15. It was about height, and the height growth was hampered by weight issue. They go hand in hand for some kids.

Anonymous wrote:
Are you OP? My one concern is your mention of ballet. It is a very visual art form, very perfectionistic (which can exacerbate anxiety), very focused on the look of the body.. I also realize it is an art form that is very soothing to anxiety - both things can be true at the same time. So just proceed cautiously.

Because ballet can be intense and burn a lot of calories, this is an example where I would force the meal. She simply has to eat a sufficient high calorie meal before she dances or she has to miss class that day. Don't let her push the meal off until after class when her muscles feel tight and she is ready to relax.

DP. This is a kind way of saying that ballet gives girls eating disorders. Maybe not all girls but nearly all of them.

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.

Are you OP? My one concern is your mention of ballet. It is a very visual art form, very perfectionistic (which can exacerbate anxiety), very focused on the look of the body.. I also realize it is an art form that is very soothing to anxiety - both things can be true at the same time. So just proceed cautiously.

Because ballet can be intense and burn a lot of calories, this is an example where I would force the meal. She simply has to eat a sufficient high calorie meal before she dances or she has to miss class that day. Don't let her push the meal off until after class when her muscles feel tight and she is ready to relax.

Anonymous wrote:

Anonymous wrote:I can't recommend for or against a feeding tube for your child but we fought like this for years and when my daughter was 10 and still only weighed 39 pounds and was the size of a four year old, we made the decision as a family (including her) that she needed the assistance of a feeding tube to get enough calories.

It has helped so much. She still eats by mouth, whatever she wants, but she has grown and gained 15 pounds. She's around 53 pounds now at 13, and still terribly petite, but we no longer worry about her dying from any infection or illness. She gets an overnight feed and there is not so much pressure on her, no more screaming fights about what she ate, no more worry that if she has a fever and loses 1 or 2 pounds someone will call CPS.

And your child is 11. She is going to inevitably hit puberty, which means a growth spurt. Her body cannot keep up with that growth spurt. You are running a race against time. So I see so many positives in a feeding tube. There are many myths about tubes -- the child will forget how to eat (not true); infections (no).

This is something that could really help normalize your child's life. The posters recommending bananas and cheese and so forth have no idea what it is like to have a child like this. If bananas and chocolate chips worked, she wouldn't be this thin.

Thank you. I know the posters with food suggestions are trying to be helpful. I really wish that’s all it took. Maybe with DD’s cooperation, bananas will be the magic bullet. Her involvement is critical, and has been a missing piece, but even that is complicated. What if she tries her best and still fails to thrive? Does she then feel like a failure? At what point do we take back the reins? Damn this is hard.

I'm so sorry OP - this response of yours brought tears to my eyes.

I hope her therapist can help her address this - that she has a medical condition that she's tried her best to do everything she can, but she needs more help. I know that can be hard to accept.

I don't have any other advice or experience - I hope the BTDT stories have been helpful and wish you and your daughter and family the very best.