Anonymous wrote:OP, you posted this early on:

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.

I am astounded that her team and you and your husband are allowing this child to participate in ballet, a high energy sport, when she has poor bone growth and is feeling weak, tired and dizzy most likely due to insufficient caloric intake.

I know that dance makes her happy and gives her self confidence. But your child has poor nutritional status. Through no fault of her own or fault of her parents but it is the truth nevertheless.

Your daughter should not be participating in high energy sports of any kind until she can eat enough food to fuel her own growth.

She does not needs to be diagnosed with an eating disorder for you to take this extremely seriously and to use techniques that are helpful for feeding children with eating disorders. Step one is to reduce all unnecessary physical activities. No more ballet!!! You are shooting yourself in the foot by allowing her to continue to burn calories when she cannot eat enough calories to let her bones grow.

Step two is to focus on high calorie foods -- not the red peppers. Add oil to everything. Count all her calories and make sure she is getting 3000+ calories per day. (Ask about the use of periactin to help her stomach empty faster.)

You seem to think that anorexia is about control but it is not. It is about not eating enough calories to fuel growth. She might not have started with anorexia, but just filling up her stomach fast, plus additional caloric needs of her sport and of trying to grow, may have triggered anorexia.

You need to stop the ballet now.

Anonymous wrote:OP, you posted this early on:

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.

I am astounded that her team and you and your husband are allowing this child to participate in ballet, a high energy sport, when she has poor bone growth and is feeling weak, tired and dizzy most likely due to insufficient caloric intake.

I know that dance makes her happy and gives her self confidence. But your child has poor nutritional status. Through no fault of her own or fault of her parents but it is the truth nevertheless.

Your daughter should not be participating in high energy sports of any kind until she can eat enough food to fuel her own growth.

She does not needs to be diagnosed with an eating disorder for you to take this extremely seriously and to use techniques that are helpful for feeding children with eating disorders. Step one is to reduce all unnecessary physical activities. No more ballet!!! You are shooting yourself in the foot by allowing her to continue to burn calories when she cannot eat enough calories to let her bones grow.

Step two is to focus on high calorie foods -- not the red peppers. Add oil to everything. Count all her calories and make sure she is getting 3000+ calories per day. (Ask about the use of periactin to help her stomach empty faster.)

You seem to think that anorexia is about control but it is not. It is about not eating enough calories to fuel growth. She might not have started with anorexia, but just filling up her stomach fast, plus additional caloric needs of her sport and of trying to grow, may have triggered anorexia.

You need to stop the ballet now.

Anonymous wrote:How on earth can we back off on the control when our daughter is starving before our eyes?

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.

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?

At the same time, DD’s ballet school told me that her body was at risk of injury because she is so thin.

Then my niece almost died from starvation and I couldn’t let my friends and family tell me I was imagining a problem.

DD’s therapist has also urged a hands off approach by me, which has helped her anxiety and improved her appetite some, but not enough. The feeding tube recommendation is at direct odds with this approach of allowing her to control what goes in her body and I fear will undo whatever progress she has made. Due to my lurking fear of an eating disorder down the road, I want to proceed with great caution.

Anonymous wrote:

Anonymous wrote:
Her psychologist warned us to back off on the food pushing because while she doesn’t have an eating disorder now, our anxiety could trigger one.
Has anyone been through this?

Was the psychologist an eating disorder specialist? Because this isn't how eating disorders actually occur.

Was this the only psychologist who ruled out an eating disorder? Not all of them know what they are talking about. I would consider making an appointment with an eating disorder specialist, incluing a psychiatrist not a psychologist.

Anonymous wrote:
Her psychologist warned us to back off on the food pushing because while she doesn’t have an eating disorder now, our anxiety could trigger one.
Has anyone been through this?

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 wrote:

Anonymous wrote:I'm sorry. We have an underweight 13 year old. She's always been small and underweight. Eats healthy but not a lot. She has anxiety and is on meds for That. We talk about eating as feeding her machine, like a car needs gas. The food is fuel that helps her engine run better, like her anxious mind. She gets full easily. Our pediatrician suggested 2 tblspns of peanut butter per day (eats one in morning and I've in afternoon). And 1 cheese stick or baby bell cheese each day. Little meals with big calories protein and fat. We try and focus on dense foods, not amounts. She does CBT and practices feeling full and sitting with the feeling. Paying attention to hunger cues, which can include not thinking clearly, tired, increased anxiety. It's a daily issue and we too worry about eating dirorders. Sending you all support.

It sounds like we are following similar advice. DD eats peanut butter by the spoonful. I wish you the best and all those who are struggling. The spector of an eating disorder on top of this feels too much to bear, but we need to be prepared. Sometimes I feel like a failure as a mother that I can’t even feed my kid. Or that my anxiety caused this and maybe she would be better off at camp as one PP suggested. It’s hard.

Anonymous wrote:

Anonymous wrote:I'm sorry. We have an underweight 13 year old. She's always been small and underweight. Eats healthy but not a lot. She has anxiety and is on meds for That. We talk about eating as feeding her machine, like a car needs gas. The food is fuel that helps her engine run better, like her anxious mind. She gets full easily. Our pediatrician suggested 2 tblspns of peanut butter per day (eats one in morning and I've in afternoon). And 1 cheese stick or baby bell cheese each day. Little meals with big calories protein and fat. We try and focus on dense foods, not amounts. She does CBT and practices feeling full and sitting with the feeling. Paying attention to hunger cues, which can include not thinking clearly, tired, increased anxiety. It's a daily issue and we too worry about eating dirorders. Sending you all support.

It sounds like we are following similar advice. DD eats peanut butter by the spoonful. I wish you the best and all those who are struggling. The spector of an eating disorder on top of this feels too much to bear, but we need to be prepared. Sometimes I feel like a failure as a mother that I can’t even feed my kid. Or that my anxiety caused this and maybe she would be better off at camp as one PP suggested. It’s hard.

Anonymous wrote:

Anonymous wrote:I'm sorry. We have an underweight 13 year old. She's always been small and underweight. Eats healthy but not a lot. She has anxiety and is on meds for That. We talk about eating as feeding her machine, like a car needs gas. The food is fuel that helps her engine run better, like her anxious mind. She gets full easily. Our pediatrician suggested 2 tblspns of peanut butter per day (eats one in morning and I've in afternoon). And 1 cheese stick or baby bell cheese each day. Little meals with big calories protein and fat. We try and focus on dense foods, not amounts. She does CBT and practices feeling full and sitting with the feeling. Paying attention to hunger cues, which can include not thinking clearly, tired, increased anxiety. It's a daily issue and we too worry about eating dirorders. Sending you all support.

It sounds like we are following similar advice. DD eats peanut butter by the spoonful. I wish you the best and all those who are struggling. The spector of an eating disorder on top of this feels too much to bear, but we need to be prepared. Sometimes I feel like a failure as a mother that I can’t even feed my kid. Or that my anxiety caused this and maybe she would be better off at camp as one PP suggested. It’s hard.

Anonymous wrote:I'm sorry. We have an underweight 13 year old. She's always been small and underweight. Eats healthy but not a lot. She has anxiety and is on meds for That. We talk about eating as feeding her machine, like a car needs gas. The food is fuel that helps her engine run better, like her anxious mind. She gets full easily. Our pediatrician suggested 2 tblspns of peanut butter per day (eats one in morning and I've in afternoon). And 1 cheese stick or baby bell cheese each day. Little meals with big calories protein and fat. We try and focus on dense foods, not amounts. She does CBT and practices feeling full and sitting with the feeling. Paying attention to hunger cues, which can include not thinking clearly, tired, increased anxiety. It's a daily issue and we too worry about eating dirorders. Sending you all support.

Anonymous wrote:

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.

+1. OP, it may have sounded like an off-the-cuff remark, but it was not. Full team meetings do happen, but they are hard to arrange; most likely the RD was speaking for a group decision/ discussion that had already taken place. Of course none of us was there to hear this conversation, but it could also be that she was telling you what is down the road -- as in, already being considered by the medical team.