Alarmingly underweight tween

[Anonymous]

This kid needs to be sent to summer camp for a good month to just have fun and get away from all of you.

[Anonymous]

Is she on meds that could cause this? Adhd meds? Anti anxiety drugs?

Are there not just appetite stimulants that she could take for a while?

[Anonymous]

OP here again. I wanted to thank those who have shared positive experiences with feeding tubes. It makes the possibility a little less scary. I’m not closed to the idea, but want to exhaust other options first, for the reasons expressed above.

[Anonymous]

OP, you might look for a specialized group on FB for low BMI kids or kids with feeding tubes. I'm part of several closed groups and it can be a great way to get support for less common issues.

[Anonymous]

Anonymous wrote:

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?)

It's a button tube. After the initial getting used to it stages, it has been super easy, is pretty much invisible at school for example, and is not even something we think about or manage much other than setting up a feed to run at night. He eats whatever he likes during the day. I think the general rule is if it's going to stay in more than 2-3 months, then you go with a g-tube and not NG.

The initial goal was getting into a healthy weight range, and now we are focused on getting appropriate nutritional support through puberty and growth spurt. I foresee he has it through the next couple of years at least while the calorie needs are so high. Frankly, I'm not clear totally on what happens in the adult years, but we had to do something in the shorter term.

[Anonymous]

Anonymous wrote:This kid needs to be sent to summer camp for a good month to just have fun and get away from all of you.

I kinda agree with this.

I was very skinny as a child, my mother was skinny as a child, my kids are very skinny (BMI 12.5ish). Some kids are overweight, some kids are underweight.

[Anonymous]

It seems like there's a lot going on here. I'm picking up on lots of anxiety all around and I'm sure it's feeding on itself, for both you and your daughter. Lots of positive thoughts to you; I hope you can resolve it without a tube. In all this advice, the piece I think is the best is to pick a few concrete metrics, and if she can hit those on her own, no tube. If she can't, consider the tube. Good luck!

[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.

Then maybe a tube will really help things! If everyone knows she's getting enough calories at night from the tube, then the hassling her to eat can stop and she can relax. And you can relax! I know people who's kids have done tube feeding for other medical reasons and while obviously not idea, it allowed everyone to exhale on that particular issue.

[Anonymous]

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

OP, I'm not necessarily advocating for the feeding tube, but be careful with responses from here. Well meaning people are going to post thinking they have something to add and can relate, when in fact no one really understands the situation. Since you are resistant to the feeding tube, you might be persuaded by these posts. Please get several opinions from the medical community. I'm so sorry that you and your family are going through this.

[Anonymous]

I also have a daughter who was underweight (thought not as underweight as your daughter), was (and still is) a very picky eater. I sympathize with the predicament you are in because I also felt like I was pushing my daughter to eat, eat, eat and realized that was creating an unhealthy dynamic.

Do the feeding tube. With a feeding tube, you will know your daughter is getting the proper nutrients she needs to grow. You will know she is getting enough calories. You won't have to force her to eat food and she can eat what, when and how much she likes. You won't have to worry that she isn't eating enough or the proper foods she needs.

That might help with her anxiety.

[Anonymous]

Anonymous wrote:

Anonymous wrote:This kid needs to be sent to summer camp for a good month to just have fun and get away from all of you.

I kinda agree with this.

I was very skinny as a child, my mother was skinny as a child, my kids are very skinny (BMI 12.5ish). Some kids are overweight, some kids are underweight.

I know you mean well, but ordinary "skinny" and "fell off the growth chart" are very different problems that have to be addressed differently.

[Anonymous]

Just wanted to offer another perspective, OP.

I pulled my own growth charts from when I was a kid, and your kid's stats match pretty much exactly where I was at 11. I'm now a normal size (size 6) woman, average height.
My mom's growth chart said I was up to 67 by my 12th bday appointment, so I must have gained a lot that year. I remember I weighed 92 pounds (at 5'4") when I left for college, so was still very thin, and have been gradually packing the pounds on with every passing decade. I did come from a family of very thin women.

But I totally get the concern. My own tween child has eating issues, and is in therapy for anxiety. The food is one big issue, and we're trying not to hyper-focus on it, or focus on it in the wrong way, to avoid triggering an eating disorder.

I would be very interested in what the endocrinologist has to say about all of this, as I think a lot of this probably has an endocrine connection.

I'm not quite clear from your post whether the issue is that your daughter refuses food, or just doesn't eat large enough quantities. I think the former would concern me more.

But a few thoughts, from my experience as both an underweight kid and a mom.

-- I agree it can't be a battle. But you can impose consequences like "you can't go to X until you have eaten lunch." Just in a matter of fact way, it's not okay to skip meals -- for her, "meals" might mean 5-6 meals a day, if she isn't eating a lot at one meal.

-- You have to untie the concept of eating with the notion of hunger or desire for food, at least for now. Eating is like brushing your teeth -- your body needs to do it whether or not you feel the need to do it. I explain to my kid that, generally, your brain gets messages from your body about what your body needs. Some people's brains don't get the message that they've eaten all they need. But other people's brains don't get the message that they need to eat. (Just like some people's brains don't always get the message that they need to sleep, or need to pee, or whatever.) Because we know that message isn't always getting through, we need to just make sure you're eating regularly even when your brain isn't getting the message that you're hungry. There's so much emphasis now on not over-eating (don't eat unless you are hungry), and for some people, the issue runs the other way.

-- I don't know what your nutritionist says, but I would not focus at all on vegetables. Vegetables are great for long-term health, but they don't do much to promote growth, and are very filling with few calories. I'd focus on protein, fat and calcium. Pudding is great; smoothies with full-fat greek yogurt; PB-banana grilled sandwich fried in butter; grilled cheese, quiche, nuts (candied or flavored if she won't eat them plain), etc. Smoothies are good because you can consume a lot of calories without even noticing it. Salmon is also great, but I know a lot of kids don't like it. If you want some recipe suggestions, start a separate thread and I'm sure people can give you some.

Good luck!

[Anonymous]

Anonymous wrote:

Anonymous wrote:This kid needs to be sent to summer camp for a good month to just have fun and get away from all of you.

I kinda agree with this.

I was very skinny as a child, my mother was skinny as a child, my kids are very skinny (BMI 12.5ish). Some kids are overweight, some kids are underweight.

Then you kinda aren't reading the post. This child has a TEAM of specialists at Children's for goodness sake. This is not about "some kids are chubby, some are skinny"

[Anonymous]

Anonymous wrote:Is she on meds that could cause this? Adhd meds? Anti anxiety drugs?

Are there not just appetite stimulants that she could take for a while?

God. Read the thread - this was addressed at the beginning that the kid is not on ANY meds.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:This kid needs to be sent to summer camp for a good month to just have fun and get away from all of you.

I kinda agree with this.

I was very skinny as a child, my mother was skinny as a child, my kids are very skinny (BMI 12.5ish). Some kids are overweight, some kids are underweight.

Then you kinda aren't reading the post. This child has a TEAM of specialists at Children's for goodness sake. This is not about "some kids are chubby, some are skinny"

After three years of doctor visits (on the advice of a random pediatric endocrinologist), the doctors found nothing medically wrong with her but did give her anxiety. So did that help?

I get it. My kids are underweight too. But the problem isn't the weight, the problem is that OP's DD is too short. And yet other posters have said that she's not far different from them.