Anonymous wrote:

Anonymous wrote:OP here and I should add that no one who meets DD believes she has issues with nutrition, except for her size. Her vitals are fine. Her moods are stable. She has friends. She’s smart and excels at her activities. She is sparkly and vibrant. Her teachers love her. She is beautiful with a dancer’s build. She rarely gets sick - in fact her immune system is stronger than anyone I know. She takes after my husband’s side of the family, who are all very late bloomers. Puberty is years away. For all these reasons, it is hard to accept there is something more serious or life threatening at play. It seems so unbelievable, yet here we are.

As for the dietician’s suggestion, I believe this was not a coordinated effort. If it were, I would expect a meeting with the full team. This was an off-the-cuff remark that set me reeling. There is no way she would recommend waiting three months if the situation were so dire as to necessitate immediate intervention. If the full team were to sit down with us, we would be taking a different approach.

OP, this is really hard and I wish the best for your DD.

This post -- and I mean this is the most caring, understanding way -- makes you sound like you're trying your best to justify the path of least resistance when it may not be in your child's best interest. A medical professional who knows Children's tells you that the feeding tube advice is coordinated at some level: it likely is, or is protocol in these cases, or will be warranted soon and they are trying to get you used to that real possibility. To say she has a "dancer's body" is unnecessarily glamorizing what is likely a serious problem, not to say your DD isn't beautiful. Puberty may be years away, but is also may not be.

Sleep on this and consult some new experts, hopefully without having to subject your already anxious child to more tests at first. This is so tough, and I feel for you.

Anonymous wrote:

Anonymous wrote:OP, is the niece who was hospitalized on your husband's side or your side? Is that the same side of the family that has so many women with late on set puberty?

Yes she is on my husband’s side, but takes after her father not her mother in build and hormones. Her puberty was normal, whereas her mom’s was delayed. My MIL remembers both daughters wearing children’s first communion dresses to their 8th grade graduations, they were so tiny and had to wear white. It’s not out of the question that DDs puberty is years away. Her endocrinologists at NIH predicted onset of puberty in 3-4 years, based on her bloodwork and bone age.

Anonymous wrote:OP, is the niece who was hospitalized on your husband's side or your side? Is that the same side of the family that has so many women with late on set puberty?

Anonymous wrote:

Anonymous wrote:OP here and I should add that no one who meets DD believes she has issues with nutrition, except for her size. Her vitals are fine. Her moods are stable. She has friends. She’s smart and excels at her activities. She is sparkly and vibrant. Her teachers love her. She is beautiful with a dancer’s build. She rarely gets sick - in fact her immune system is stronger than anyone I know. She takes after my husband’s side of the family, who are all very late bloomers. Puberty is years away. For all these reasons, it is hard to accept there is something more serious or life threatening at play. It seems so unbelievable, yet here we are.

As for the dietician’s suggestion, I believe this was not a coordinated effort. If it were, I would expect a meeting with the full team. This was an off-the-cuff remark that set me reeling. There is no way she would recommend waiting three months if the situation were so dire as to necessitate immediate intervention. If the full team were to sit down with us, we would be taking a different approach.

OP, this is really hard and I wish the best for your DD.

This post -- and I mean this is the most caring, understanding way -- makes you sound like you're trying your best to justify the path of least resistance when it may not be in your child's best interest. A medical professional who knows Children's tells you that the feeding tube advice is coordinated at some level: it likely is, or is protocol in these cases, or will be warranted soon and they are trying to get you used to that real possibility. To say she has a "dancer's body" is unnecessarily glamorizing what is likely a serious problem, not to say your DD isn't beautiful. Puberty may be years away, but is also may not be.

Sleep on this and consult some new experts, hopefully without having to subject your already anxious child to more tests at first. This is so tough, and I feel for you.

Anonymous wrote:

Anonymous wrote:OP here and I should add that no one who meets DD believes she has issues with nutrition, except for her size. Her vitals are fine. Her moods are stable. She has friends. She’s smart and excels at her activities. She is sparkly and vibrant. Her teachers love her. She is beautiful with a dancer’s build. She rarely gets sick - in fact her immune system is stronger than anyone I know. She takes after my husband’s side of the family, who are all very late bloomers. Puberty is years away. For all these reasons, it is hard to accept there is something more serious or life threatening at play. It seems so unbelievable, yet here we are.

As for the dietician’s suggestion, I believe this was not a coordinated effort. If it were, I would expect a meeting with the full team. This was an off-the-cuff remark that set me reeling. There is no way she would recommend waiting three months if the situation were so dire as to necessitate immediate intervention. If the full team were to sit down with us, we would be taking a different approach.

OP, this is really hard and I wish the best for your DD.

This post -- and I mean this is the most caring, understanding way -- makes you sound like you're trying your best to justify the path of least resistance when it may not be in your child's best interest. A medical professional who knows Children's tells you that the feeding tube advice is coordinated at some level: it likely is, or is protocol in these cases, or will be warranted soon and they are trying to get you used to that real possibility. To say she has a "dancer's body" is unnecessarily glamorizing what is likely a serious problem, not to say your DD isn't beautiful. Puberty may be years away, but is also may not be.

Sleep on this and consult some new experts, hopefully without having to subject your already anxious child to more tests at first. This is so tough, and I feel for you.

Anonymous wrote:OP here and I should add that no one who meets DD believes she has issues with nutrition, except for her size. Her vitals are fine. Her moods are stable. She has friends. She’s smart and excels at her activities. She is sparkly and vibrant. Her teachers love her. She is beautiful with a dancer’s build. She rarely gets sick - in fact her immune system is stronger than anyone I know. She takes after my husband’s side of the family, who are all very late bloomers. Puberty is years away. For all these reasons, it is hard to accept there is something more serious or life threatening at play. It seems so unbelievable, yet here we are.

As for the dietician’s suggestion, I believe this was not a coordinated effort. If it were, I would expect a meeting with the full team. This was an off-the-cuff remark that set me reeling. There is no way she would recommend waiting three months if the situation were so dire as to necessitate immediate intervention. If the full team were to sit down with us, we would be taking a different approach.

Anonymous wrote:

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 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?

Anonymous wrote:

Anonymous wrote:

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.

Yes! This was a main finding of the Minnesota Starvation Experiment. Which showed that when healthy people become malnourished they display many psychological symptoms that they did not have before, and following re-feeding the subjects' behavior returned to baseline.

Anonymous wrote:

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.