Alarmingly underweight tween

[Anonymous]

Anonymous wrote:

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.

OP here and thank you. I really do appreciate all the perspectives, even those in different situations. To clarify, DD's entire team did not suggest a tube. Her dietician suggested it yesterday following a discouraging appointment revealing no change. This was not in consultation with the team and that would be my next step. When I posted here, I was still reeling and freaked by what I now see as my own ignorance concerning feeding tubes. I'm resistant, but not closed, to the idea. If we were to go this route, my husband would need more convincing than I, and we would certainly seek more expert opinions.

But I do feel there is more we can do at home than we've done. I have been trying to be more hands off about food, and I see now that more guidance is necessary. It's such a delicate balance, and is a lonely battle, as DH does not feel the urgency I do. That is another issue for another post. Today she and I packed her lunch together: Cheesy mashed potatoes with sour cream, a handful of nuts, red bell peppers, and a date bar for snack. She said she was worried she wouldn't finish it all and planned to eat the peppers first because they might get soggy. We had a long conversation about balance and trying to maximize nutritional content in the few bites she can manage. Clearly, more education is important. Maybe I'm still in denial, but I don't believe we have really exhausted all the options. My goal is to help her develop body awareness and a healthy attitude toward food for life, which seems increasingly unlikely right now.

At any rate, her dietician was comfortable with our employing some concrete strategies (adding two supplements a day, heavy cream in her cereal, snack bars in her backpack, locker and car) and then checking on her progress in three months. If she begins to put on some weight, we will continue; if not, we will reevaluate options.

[Anonymous]

IDK, that sounds kind of like an anorexic's bargaining strategy. Whatever is going on, I really do hope you see progress.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

OP here and thank you. I really do appreciate all the perspectives, even those in different situations. To clarify, DD's entire team did not suggest a tube. Her dietician suggested it yesterday following a discouraging appointment revealing no change. This was not in consultation with the team and that would be my next step. When I posted here, I was still reeling and freaked by what I now see as my own ignorance concerning feeding tubes. I'm resistant, but not closed, to the idea. If we were to go this route, my husband would need more convincing than I, and we would certainly seek more expert opinions.

But I do feel there is more we can do at home than we've done. I have been trying to be more hands off about food, and I see now that more guidance is necessary. It's such a delicate balance, and is a lonely battle, as DH does not feel the urgency I do. That is another issue for another post. Today she and I packed her lunch together: Cheesy mashed potatoes with sour cream, a handful of nuts, red bell peppers, and a date bar for snack. She said she was worried she wouldn't finish it all and planned to eat the peppers first because they might get soggy. We had a long conversation about balance and trying to maximize nutritional content in the few bites she can manage. Clearly, more education is important. Maybe I'm still in denial, but I don't believe we have really exhausted all the options. My goal is to help her develop body awareness and a healthy attitude toward food for life, which seems increasingly unlikely right now.

At any rate, her dietician was comfortable with our employing some concrete strategies (adding two supplements a day, heavy cream in her cereal, snack bars in her backpack, locker and car) and then checking on her progress in three months. If she begins to put on some weight, we will continue; if not, we will reevaluate options.

OP, thank you for this update. I am an RD and have followed this post.

I think that you have one misperception that I want to clear up: the dietitian at Children's is definitely working with the entire medical care team in making this recommendation. Even if it did not appear that she had consulted the pediatrician or others before bringing up the feeding tube, I promise you that they are all working together on this and that her full medical team supported the RD in bringing up this possibility. They read each other's notes and, most likely, have had conferences about your daughter that you are not aware of. The team at Children's is one of the best, so please take to heart what they have to say. I'm not surprised that the RD brought up a feeding tube at this point; they want to give you time to adjust to that as a possibility before it becomes a medical necessity.

One other point that I'd add while working with your DD: please remember that calories, more than anything else, are what is essential now. This is more important than vitamins and minerals, fiber and everything else we typically talk to kids about. While red peppers is a great snack or lunch item for most kids, in your situation, I would not suggest this - especially if she is going to eat that first because of a perceived change in texture.

Can she get accommodations at school for more time to eat lunch?

[Anonymous]

I'm a NP and haven't read all the responses, but I'm shocked that your dietician is not seeing you again for THREE MONTHS. My DD is struggling with disordered eating as a result of ARFID....(over simplifying it: just not wanting to eat, not wanting to feel full, texture issues, etc) and we see the nutritionist (with a background in treating ED) every 2-3 weeks. She sets small goals (add peanut butter. Try sunflower seeds, etc) and they make a bit of a contract, check her weight/height, etc. She also sees a counselor once a month. At the point, the nutritionist doesn't feel that DD has anorexia, but we are working to make sure that the ARFID doesn't take that turn.

Is there someone else you can see more often? That would take some of the pressure off of you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

OP here and thank you. I really do appreciate all the perspectives, even those in different situations. To clarify, DD's entire team did not suggest a tube. Her dietician suggested it yesterday following a discouraging appointment revealing no change. This was not in consultation with the team and that would be my next step. When I posted here, I was still reeling and freaked by what I now see as my own ignorance concerning feeding tubes. I'm resistant, but not closed, to the idea. If we were to go this route, my husband would need more convincing than I, and we would certainly seek more expert opinions.

But I do feel there is more we can do at home than we've done. I have been trying to be more hands off about food, and I see now that more guidance is necessary. It's such a delicate balance, and is a lonely battle, as DH does not feel the urgency I do. That is another issue for another post. Today she and I packed her lunch together: Cheesy mashed potatoes with sour cream, a handful of nuts, red bell peppers, and a date bar for snack. She said she was worried she wouldn't finish it all and planned to eat the peppers first because they might get soggy. We had a long conversation about balance and trying to maximize nutritional content in the few bites she can manage. Clearly, more education is important. Maybe I'm still in denial, but I don't believe we have really exhausted all the options. My goal is to help her develop body awareness and a healthy attitude toward food for life, which seems increasingly unlikely right now.

At any rate, her dietician was comfortable with our employing some concrete strategies (adding two supplements a day, heavy cream in her cereal, snack bars in her backpack, locker and car) and then checking on her progress in three months. If she begins to put on some weight, we will continue; if not, we will reevaluate options.

OP, thank you for this update. I am an RD and have followed this post.

I think that you have one misperception that I want to clear up: the dietitian at Children's is definitely working with the entire medical care team in making this recommendation. Even if it did not appear that she had consulted the pediatrician or others before bringing up the feeding tube, I promise you that they are all working together on this and that her full medical team supported the RD in bringing up this possibility. They read each other's notes and, most likely, have had conferences about your daughter that you are not aware of. The team at Children's is one of the best, so please take to heart what they have to say. I'm not surprised that the RD brought up a feeding tube at this point; they want to give you time to adjust to that as a possibility before it becomes a medical necessity.

One other point that I'd add while working with your DD: please remember that calories, more than anything else, are what is essential now. This is more important than vitamins and minerals, fiber and everything else we typically talk to kids about. While red peppers is a great snack or lunch item for most kids, in your situation, I would not suggest this - especially if she is going to eat that first because of a perceived change in texture.

Can she get accommodations at school for more time to eat lunch?

Mental health professional here, and agree with this. I haven't read the whole thread, but I skimmed and I believe a mental health professional is part of the treatment team. Is this someone who is trained in evidence-based approaches for EDs? I don't know whether your daughter meets criteria for an ED, but at the very least she is severely underweight and there is a significant behavioral component to her being underweight, and so some of the methods might still be helpful. Specifically, the Maudsley approach for family-based treatment for EDs focuses on weight restoration. I am not trained in this approach, although have colleagues that are (unfortunately, none in this area).

I just wanted to mention in case this hasn't been explored. It's the approach I'd explore if this were my own daughter. Good luck!

[Anonymous]

Tagging on to 15:08. I’m 11:48. Prosperity, the group we’re working with now, is all about Family Based Treatment/Maudsley. The group therapy work (and they also have counselors) is all about building patients up; it’s not punitive at all. I’ve been really impressed with them. They do have therapists there for individual work.

They are in Herndon. I don’t know where you are, but I’m sharing it in case it helps anyone reading this thread.

[Anonymous]

After reading this more, I am so happy that some people who have children who have needed a feeding tube and professionals who work in this field have posted.

It sounds like the feeding tube would take some stress off of your relationship with her because she could get many calories overnight.

Finally it sounds like your dh and you could benefit from help. He should be on the same page with you and take it seriously. If he isn't going to appts with the doctors then he needs to get his ass in there and be there. He is letting you down and your dd down.

[Anonymous]

I'm the mom of the 10.5 year old. She really just wasn't consuming enough cals in a day and said she wasn't hungry. She will eat baguette with butter for lunch, (won't eat any sandwiches on normal bread), stouffers mac and cheese is quite caloric, we do pasta with lots of parm cheese and butter, chicken thighs and white rice with a little broccoli. We do two big cups of carnation instant breakfast a day. She sometimes will have a cheese stick. She likes Morningstar farm chicken nuggets (not real chicken ones). She does one carnation during the day at school most days of the week. She drinks it quickly in the back of classroom.

[Anonymous]

I have a sixth grader. She's super skinny but weighs almost 100 pounds. She wears a size 14 Slim clothes. What size does your daughter wear at 53 pounds?

[Anonymous]

Anonymous wrote:I have a sixth grader. She's super skinny but weighs almost 100 pounds. She wears a size 14 Slim clothes. What size does your daughter wear at 53 pounds?

7/8. I just retired some 6T shorts. It took her four years to outgrow them.

[Anonymous]

I'm a pediatrics resident and I posted some stuff about feeding tubes above. I agree with the NP who was wondering if there is someone who can check in with you guys a little sooner than 3 months? My concerns would be 1. is she medically stable? and 2. at almost 12 she should be gearing up for puberty right now so its crucial that improvement in her nutritional state starts to happen.

I am so sorry to read about your niece having an eating disorder. There is a strong hereditary component to eating disorders, so I would absolutely keep that on your radar as well. (And if that is the case, RUN from any professional who makes you feel like its your/your husband's fault or wants to not involve you in treatment.)

I said this above but if it comes down to a feeding tube being medically necessary, don't be afraid to do what is needed! It could potentially be a game changer for her and for your whole family. I sincerely hope you find some answers soon, you sound like a great mom.

[Anonymous]

I came back to post that the comment by the parent who pointed out that an undernourished brain does not think rationally has really resonated with me.

I don't think your dd can start to heal from the anxiety and the disordered eating until her brain is running on all of its cylinders again.

[Anonymous]

Anonymous wrote:I'm the mom of the 10.5 year old. She really just wasn't consuming enough cals in a day and said she wasn't hungry. She will eat baguette with butter for lunch, (won't eat any sandwiches on normal bread), stouffers mac and cheese is quite caloric, we do pasta with lots of parm cheese and butter, chicken thighs and white rice with a little broccoli. We do two big cups of carnation instant breakfast a day. She sometimes will have a cheese stick. She likes Morningstar farm chicken nuggets (not real chicken ones). She does one carnation during the day at school most days of the week. She drinks it quickly in the back of classroom.

DD likes the Carnation Instant Breakfast and does that at night, alternating with ice cream. We are adding heavy cream in her breakfast cereal and a serving of fruit for breakfast, a mid-morning protein bar at school, 4oz of Ensure Compact in the afternoon with her snack. I may ask if she can get a little extra time for lunch - she may object if she feels singled out though. We are keeping a diary of all her favorite foods.

[Anonymous]

Anonymous wrote:I came back to post that the comment by the parent who pointed out that an undernourished brain does not think rationally has really resonated with me.

I don't think your dd can start to heal from the anxiety and the disordered eating until her brain is running on all of its cylinders again.

^^^I should have said, I am concerned that your dd brain can't start to heal from the anxiety and the disordered eating until she is not undernourished.

[Anonymous]

Good luck, OP. Do you have your own therapist to go to and give you support? This must be incredibly hard.