Alarmingly underweight tween

[Anonymous]

WTH on a feeding tube? How does that work?

My DS is almost 14 and weighs less than 80 lbs. No one has even suggested this. What happens when she goes off it? How long?

[Anonymous]

Anonymous wrote:WTH on a feeding tube? How does that work?

My DS is almost 14 and weighs less than 80 lbs. No one has even suggested this. What happens when she goes off it? How long?

PP here. There are a lot of different kids of feeding tubes that go into all different parts of the GI tract. Some go through the nose, which are the more temporary kinds, and are called NG or NJ tubes. Then you have the ones that are placed on the abdominal wall, which are called G-tubes (going to the stomach, so G is for Gastric) or J tubes (which go into the jejunum, a part of the small intestine). All of them are removable if/when the patient can maintain their own nutritional status independently.

[Anonymous]

I can’t believe anyone suggested a feeding tube for your child. This was me and my brother growing up. Genetics I suppose. I was under 100 pounds until I was probably 18. I ate normally just not a lot. Doctors always annoyed the shit out of me and my mom for my being underweight.

Well I’m perfectly healthy, no health problems, and very thankful my parents trusted our genes and not these doctors suggestions by bringing me from specialist to specialist.

Now I have a two year old DS and his ped is up my butt about his weight gain too but he’s just got the same genes, and I married a tall skinny guy as well so there’s that.

[Anonymous]

When I was in elementary school, during a health screening, the nurse called my mom to tell her to take me to the pediatrician immediately - I was so skinny I was OFF the growth chart. Like, lower than 0 percentile. My mom panicked and called my dr. His exact words were “calm down. She’s fine. She’ll eat when she’s hungry”. I didn’t break 100 lbs until college. And I’ve always looked much younger than I am.

Sometimes medical intervention is good, sometimes it’s overkill. I would definitely not get the feeding tube unless your daughter has severe nutritional deficiencies, which I’m sure your doctor would be aware of.

It’ll be ok, op.

[Anonymous]

OP here. Thanks for the gentle advice. I’m feeling fragile right now.

To answer some questions, the nutritionist is a dietician who works with DD’s medical team at Children’s. I am very opposed to the feeding tube for lots of reasons - most importantly because it feels like a total invasion and I’m not convinced it’s necessary anyway. But it did drive home the point that we need to take this seriously.

As for her general health, her vitals are fine. Her team at NIH concluded that her bone delay is most likely a result of “insufficient caloric intake.” She is active, happy, social, coordinated, bright. Sometimes she says she feels weak, tired, or dizzy. She is anxious, and I can’t say I blame her.

[Anonymous]

Take her to the grocery store and let her pick out some favorite food. Not a bunch of junk food but allow her to pick a few treats or snacks she likes. Banana chips, granola bars, smart popcorn are all healthy but tend to be higher calorie. Start stocking up your house with foods that tend to be higher calorie but healthy. Things that someone who is dieting may want but they avoid eating a lot of. Chips and hummus are high in calories. Large bagels, etc...

[Anonymous]

Anonymous wrote:Take her to the grocery store and let her pick out some favorite food. Not a bunch of junk food but allow her to pick a few treats or snacks she likes. Banana chips, granola bars, smart popcorn are all healthy but tend to be higher calorie. Start stocking up your house with foods that tend to be higher calorie but healthy. Things that someone who is dieting may want but they avoid eating a lot of. Chips and hummus are high in calories. Large bagels, etc...

I will add cut up a banana and put chips on a plate and put in front of her while she’s doing work or watching tv. Don’t ask her if she wants it. Just put it out. Also veggies with ranch dressing which is high calorie can be a good snack.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:OP here. Thanks for the gentle advice. I’m feeling fragile right now.

To answer some questions, the nutritionist is a dietician who works with DD’s medical team at Children’s. I am very opposed to the feeding tube for lots of reasons - most importantly because it feels like a total invasion and I’m not convinced it’s necessary anyway. But it did drive home the point that we need to take this seriously.

As for her general health, her vitals are fine. Her team at NIH concluded that her bone delay is most likely a result of “insufficient caloric intake.” She is active, happy, social, coordinated, bright. Sometimes she says she feels weak, tired, or dizzy. She is anxious, and I can’t say I blame her.

This must be so incredibly hard, OP. Is her anxiety being addressed/treated as well, either through medication or therapy, or both? Weight gain and increased appetite was one benefit of medication for our DC's anxiety, and being heavier did really help with the dizziness and lack of stamina - getting those under control also increased confidence at a time when it was really beneficial.

[Anonymous]

How is her anxiety being treated? Is she receiving CBT from a licensed psychologist? Have you considered medication for her anxiety?

[Anonymous]

She has been receiving CBT at Children’s for a year and has a 504 with supports at school. We meditate at home sometimes, but most times she doesn’t want to. She loves her activities, and they are therapeutic for her too. No medicine so far. With all the doctors visits and supplements, adding drugs to the managerial mix is too much for all of us right now.

[Anonymous]

Anonymous wrote:I can’t believe anyone suggested a feeding tube for your child. This was me and my brother growing up. Genetics I suppose. I was under 100 pounds until I was probably 18. I ate normally just not a lot. Doctors always annoyed the shit out of me and my mom for my being underweight.

Well I’m perfectly healthy, no health problems, and very thankful my parents trusted our genes and not these doctors suggestions by bringing me from specialist to specialist.

Now I have a two year old DS and his ped is up my butt about his weight gain too but he’s just got the same genes, and I married a tall skinny guy as well so there’s that.

I match your description, PP. I think the OP is talking about a child even thinner than that.

OP, I'm sorry you are going through this and hope you can find a way to get more calories into your daughter. I may be a minority here, but if she is failing to thrive and eating without her mouth involved can take the pressure off, it might be the way to get the pounds on her. I can tell you from my own experience, that when my weight would drop below healthy (never to your daughter's point) it was always getting those first few pounds back on that was the hardest.

[Anonymous]

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.

[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

[Anonymous]

Anonymous wrote:

Anonymous wrote:I can’t believe anyone suggested a feeding tube for your child. This was me and my brother growing up. Genetics I suppose. I was under 100 pounds until I was probably 18. I ate normally just not a lot. Doctors always annoyed the shit out of me and my mom for my being underweight.

Well I’m perfectly healthy, no health problems, and very thankful my parents trusted our genes and not these doctors suggestions by bringing me from specialist to specialist.

Now I have a two year old DS and his ped is up my butt about his weight gain too but he’s just got the same genes, and I married a tall skinny guy as well so there’s that.

I match your description, PP. I think the OP is talking about a child even thinner than that.

OP, I'm sorry you are going through this and hope you can find a way to get more calories into your daughter. I may be a minority here, but if she is failing to thrive and eating without her mouth involved can take the pressure off, it might be the way to get the pounds on her. I can tell you from my own experience, that when my weight would drop below healthy (never to your daughter's point) it was always getting those first few pounds back on that was the hardest.

THIS! I was very thin as a child but that is not what is going on with op's child.

That she isn't growing is extremely EXTREMELY concerning.