Anonymous wrote:It sounds like you have a good plan for moving forward, OP! We are all wishing you the best of luck. I hope you'll check back in at a later point.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, what is a typical diet like each day for your DD? For you and your DH?

Here’s a hands-off day:

Whole grain cereal with whole milk
PBJ on whole wheat
Sliced apples or bananas
Toast with butter
Orange juice
Cereal with whole milk
Grilled chicken
Sweet potatoes with butter
Green beans
Ice cream

Here’s a hands-on day:

Soft boiled eggs with butter
Toast with butter
1/3 Avocado
Orange juice
Protein bar
Creamy cheesy mashed potatoes
Handful of nuts
Red peppers
Chocolate power waffle
Ensure Compact
Mango slices
Cinnamon bun
Cheese cubes and buttery crackers
1/3 Avocado
Kalamata olives
Carnation Instant Breakfast with whole milk

As for calories, I really don’t know. DD’s dietician does not recommend counting them but focusing instead on macronutrienrs food groups, with a focus on fats and proteins.

DH and eat pretty well. Oatmeal with fruit and nuts, big salad with protein for lunch or leftover dinner from the night before, nuts and banana or yogurt with granola for snacks, salmon or other protein with rice or potatoes and a vegetable of some sort, dark chocolate sometimes for desert. We eat dinner together as a family, with DD mostly eating what we do. DH drinks coffee, wine and/beer. I drink coffee and tea.

OP, this is really shocking to me - both the hands off and the hands on day. I don't know what is in the protein bar and I don't know what a chocolate power waffle is, but both of of these meal plans look like someone who is on a diet.

You can buy already cooked bacon at trader joe's. I agree with pp that you should offer more foods to her starting at breakfast. If you are having fish for dinner, then feed her a lasagna (the trader joe's lasagna used to be pretty good) or enchiladas or SOMETHING. Not cheese cubes.

You and your dh obviously are very healthy eaters as adults- your dd is neither an adult, nor healthy.

I agree with pp who said to make her scrambled eggs, bacon, and either a waffle (again frozen waffles are fine) with syrup or toast with butter and jam or nutella. Send a bagel with thick cream cheese on both sides to school with her and tell her to eat that at snack time.

After school, give her a shake with real ice cream and a side of oven baked french fries or drive through McDonald's. If she has dance, give her chocolate chip and peanut butter granola bars.

When she has steak, do an herb butter on top. Ice cream for dessert every night.

eggs with butter, toast with butter, avocado, cheese, olives, nutritional shake, whole milk, mashed potatos sound shocking?

It is just not enough to pack on the calories. I was shocked because I thought it would be much stronger. Minus the chocolate waffle and cinnamon bun of course. Also some of these things are used by people who are trying to lose weight - avocado, cheese, olives - because they are satisfying low calorie snacks.

This was the diet prescribed by her dietician.

Anonymous wrote:

Anonymous wrote:OMG everyone needs to lay off PP and acting like she must immobilize and force-feed her child cheeseburgers or else. I am pretty attuned to people's writing styles that suggest they are pushing their eating issues onto their kids, and I see nothing at all of that in OP's statements. All I see is that she has rather disjointed care at Children's, without being given a good sense of plan A and plan B, and when this becomes a medical crisis that would necessitate a feeding tube. (Which - is not surprising about Childrens. Over on the special needs board you can talk to MANY parents who deal with issues at Childrens with coordination of care and administrative issues.)

The thing OP should do is beat down the DOCTOR'S door to figure out why things are so serious as to have the feeding tube on the table. OP's original question was borne out of the confusion of the mixed messages she's getting from her DD's team. On the one hand -- keep going and come back in 3 months! On the other hand -- we may have to do a feeding tube! Those two things don't really match up.

If I were OP I'd also get a second opinion with respect to the eating disorder, at CHOP or in Boston or wherever the #1 eating disorder place is.

+1000 to all of this. OP, I know you are not a troll and I also know you are worried and are doing your absolute best. Try not to internalize what the mean/harsh people are saying. I can only imagine how overwhelming all of this is.

I agree with the PP quoted above. I think you need a second opinion on the eating disorder and the team at Children's needs to communicate with you more clearly.

This is sort of off-topic, but after I had been put on bed rest and then hospitalized with very severe pre-eclampsia, once baby came home from the NICU, I realized that my doctors and nurses had floated a lot of things in a gentle way to prepare me for what was going to happen. Things like visit the NICU just in case, lots of questions about how fast my husband could make it to my bedside from overseas, etc. I realized later that they knew the whole time that they were going to deliver her at 32 weeks if we could make it that far, but they didn't tell me that outright. The feeding tube in three months might be a case of signaling it so you can get used to the idea.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, what is a typical diet like each day for your DD? For you and your DH?

Here’s a hands-off day:

Whole grain cereal with whole milk
PBJ on whole wheat
Sliced apples or bananas
Toast with butter
Orange juice
Cereal with whole milk
Grilled chicken
Sweet potatoes with butter
Green beans
Ice cream

Here’s a hands-on day:

Soft boiled eggs with butter
Toast with butter
1/3 Avocado
Orange juice
Protein bar
Creamy cheesy mashed potatoes
Handful of nuts
Red peppers
Chocolate power waffle
Ensure Compact
Mango slices
Cinnamon bun
Cheese cubes and buttery crackers
1/3 Avocado
Kalamata olives
Carnation Instant Breakfast with whole milk

As for calories, I really don’t know. DD’s dietician does not recommend counting them but focusing instead on macronutrienrs food groups, with a focus on fats and proteins.

DH and eat pretty well. Oatmeal with fruit and nuts, big salad with protein for lunch or leftover dinner from the night before, nuts and banana or yogurt with granola for snacks, salmon or other protein with rice or potatoes and a vegetable of some sort, dark chocolate sometimes for desert. We eat dinner together as a family, with DD mostly eating what we do. DH drinks coffee, wine and/beer. I drink coffee and tea.

OP, this is really shocking to me - both the hands off and the hands on day. I don't know what is in the protein bar and I don't know what a chocolate power waffle is, but both of of these meal plans look like someone who is on a diet.

You can buy already cooked bacon at trader joe's. I agree with pp that you should offer more foods to her starting at breakfast. If you are having fish for dinner, then feed her a lasagna (the trader joe's lasagna used to be pretty good) or enchiladas or SOMETHING. Not cheese cubes.

You and your dh obviously are very healthy eaters as adults- your dd is neither an adult, nor healthy.

I agree with pp who said to make her scrambled eggs, bacon, and either a waffle (again frozen waffles are fine) with syrup or toast with butter and jam or nutella. Send a bagel with thick cream cheese on both sides to school with her and tell her to eat that at snack time.

After school, give her a shake with real ice cream and a side of oven baked french fries or drive through McDonald's. If she has dance, give her chocolate chip and peanut butter granola bars.

When she has steak, do an herb butter on top. Ice cream for dessert every night.

eggs with butter, toast with butter, avocado, cheese, olives, nutritional shake, whole milk, mashed potatos sound shocking?

It is just not enough to pack on the calories. I was shocked because I thought it would be much stronger. Minus the chocolate waffle and cinnamon bun of course. Also some of these things are used by people who are trying to lose weight - avocado, cheese, olives - because they are satisfying low calorie snacks.

Anonymous wrote:OMG everyone needs to lay off PP and acting like she must immobilize and force-feed her child cheeseburgers or else. I am pretty attuned to people's writing styles that suggest they are pushing their eating issues onto their kids, and I see nothing at all of that in OP's statements. All I see is that she has rather disjointed care at Children's, without being given a good sense of plan A and plan B, and when this becomes a medical crisis that would necessitate a feeding tube. (Which - is not surprising about Childrens. Over on the special needs board you can talk to MANY parents who deal with issues at Childrens with coordination of care and administrative issues.)

The thing OP should do is beat down the DOCTOR'S door to figure out why things are so serious as to have the feeding tube on the table. OP's original question was borne out of the confusion of the mixed messages she's getting from her DD's team. On the one hand -- keep going and come back in 3 months! On the other hand -- we may have to do a feeding tube! Those two things don't really match up.

If I were OP I'd also get a second opinion with respect to the eating disorder, at CHOP or in Boston or wherever the #1 eating disorder place is.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, what is a typical diet like each day for your DD? For you and your DH?

Here’s a hands-off day:

Whole grain cereal with whole milk
PBJ on whole wheat
Sliced apples or bananas
Toast with butter
Orange juice
Cereal with whole milk
Grilled chicken
Sweet potatoes with butter
Green beans
Ice cream

Here’s a hands-on day:

Soft boiled eggs with butter
Toast with butter
1/3 Avocado
Orange juice
Protein bar
Creamy cheesy mashed potatoes
Handful of nuts
Red peppers
Chocolate power waffle
Ensure Compact
Mango slices
Cinnamon bun
Cheese cubes and buttery crackers
1/3 Avocado
Kalamata olives
Carnation Instant Breakfast with whole milk

As for calories, I really don’t know. DD’s dietician does not recommend counting them but focusing instead on macronutrienrs food groups, with a focus on fats and proteins.

DH and eat pretty well. Oatmeal with fruit and nuts, big salad with protein for lunch or leftover dinner from the night before, nuts and banana or yogurt with granola for snacks, salmon or other protein with rice or potatoes and a vegetable of some sort, dark chocolate sometimes for desert. We eat dinner together as a family, with DD mostly eating what we do. DH drinks coffee, wine and/beer. I drink coffee and tea.

OP, this is really shocking to me - both the hands off and the hands on day. I don't know what is in the protein bar and I don't know what a chocolate power waffle is, but both of of these meal plans look like someone who is on a diet.

You can buy already cooked bacon at trader joe's. I agree with pp that you should offer more foods to her starting at breakfast. If you are having fish for dinner, then feed her a lasagna (the trader joe's lasagna used to be pretty good) or enchiladas or SOMETHING. Not cheese cubes.

You and your dh obviously are very healthy eaters as adults- your dd is neither an adult, nor healthy.

I agree with pp who said to make her scrambled eggs, bacon, and either a waffle (again frozen waffles are fine) with syrup or toast with butter and jam or nutella. Send a bagel with thick cream cheese on both sides to school with her and tell her to eat that at snack time.

After school, give her a shake with real ice cream and a side of oven baked french fries or drive through McDonald's. If she has dance, give her chocolate chip and peanut butter granola bars.

When she has steak, do an herb butter on top. Ice cream for dessert every night.

eggs with butter, toast with butter, avocado, cheese, olives, nutritional shake, whole milk, mashed potatos sound shocking?

It is just not enough to pack on the calories. I was shocked because I thought it would be much stronger. Minus the chocolate waffle and cinnamon bun of course. Also some of these things are used by people who are trying to lose weight - avocado, cheese, olives - because they are satisfying low calorie snacks.

um ... avocado, cheese, and olives are very calorie dense. Obviously if OP was fixated on not allowing junk food that would be an issue, but she's stated multiple times she's not. I think the peanut gallery needs to bow out now.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, what is a typical diet like each day for your DD? For you and your DH?

Here’s a hands-off day:

Whole grain cereal with whole milk
PBJ on whole wheat
Sliced apples or bananas
Toast with butter
Orange juice
Cereal with whole milk
Grilled chicken
Sweet potatoes with butter
Green beans
Ice cream

Here’s a hands-on day:

Soft boiled eggs with butter
Toast with butter
1/3 Avocado
Orange juice
Protein bar
Creamy cheesy mashed potatoes
Handful of nuts
Red peppers
Chocolate power waffle
Ensure Compact
Mango slices
Cinnamon bun
Cheese cubes and buttery crackers
1/3 Avocado
Kalamata olives
Carnation Instant Breakfast with whole milk

As for calories, I really don’t know. DD’s dietician does not recommend counting them but focusing instead on macronutrienrs food groups, with a focus on fats and proteins.

DH and eat pretty well. Oatmeal with fruit and nuts, big salad with protein for lunch or leftover dinner from the night before, nuts and banana or yogurt with granola for snacks, salmon or other protein with rice or potatoes and a vegetable of some sort, dark chocolate sometimes for desert. We eat dinner together as a family, with DD mostly eating what we do. DH drinks coffee, wine and/beer. I drink coffee and tea.

OP, this is really shocking to me - both the hands off and the hands on day. I don't know what is in the protein bar and I don't know what a chocolate power waffle is, but both of of these meal plans look like someone who is on a diet.

You can buy already cooked bacon at trader joe's. I agree with pp that you should offer more foods to her starting at breakfast. If you are having fish for dinner, then feed her a lasagna (the trader joe's lasagna used to be pretty good) or enchiladas or SOMETHING. Not cheese cubes.

You and your dh obviously are very healthy eaters as adults- your dd is neither an adult, nor healthy.

I agree with pp who said to make her scrambled eggs, bacon, and either a waffle (again frozen waffles are fine) with syrup or toast with butter and jam or nutella. Send a bagel with thick cream cheese on both sides to school with her and tell her to eat that at snack time.

After school, give her a shake with real ice cream and a side of oven baked french fries or drive through McDonald's. If she has dance, give her chocolate chip and peanut butter granola bars.

When she has steak, do an herb butter on top. Ice cream for dessert every night.

eggs with butter, toast with butter, avocado, cheese, olives, nutritional shake, whole milk, mashed potatos sound shocking?

It is just not enough to pack on the calories. I was shocked because I thought it would be much stronger. Minus the chocolate waffle and cinnamon bun of course. Also some of these things are used by people who are trying to lose weight - avocado, cheese, olives - because they are satisfying low calorie snacks.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, what is a typical diet like each day for your DD? For you and your DH?

Here’s a hands-off day:

Whole grain cereal with whole milk
PBJ on whole wheat
Sliced apples or bananas
Toast with butter
Orange juice
Cereal with whole milk
Grilled chicken
Sweet potatoes with butter
Green beans
Ice cream

Here’s a hands-on day:

Soft boiled eggs with butter
Toast with butter
1/3 Avocado
Orange juice
Protein bar
Creamy cheesy mashed potatoes
Handful of nuts
Red peppers
Chocolate power waffle
Ensure Compact
Mango slices
Cinnamon bun
Cheese cubes and buttery crackers
1/3 Avocado
Kalamata olives
Carnation Instant Breakfast with whole milk

As for calories, I really don’t know. DD’s dietician does not recommend counting them but focusing instead on macronutrienrs food groups, with a focus on fats and proteins.

DH and eat pretty well. Oatmeal with fruit and nuts, big salad with protein for lunch or leftover dinner from the night before, nuts and banana or yogurt with granola for snacks, salmon or other protein with rice or potatoes and a vegetable of some sort, dark chocolate sometimes for desert. We eat dinner together as a family, with DD mostly eating what we do. DH drinks coffee, wine and/beer. I drink coffee and tea.

OP, this is really shocking to me - both the hands off and the hands on day. I don't know what is in the protein bar and I don't know what a chocolate power waffle is, but both of of these meal plans look like someone who is on a diet.

You can buy already cooked bacon at trader joe's. I agree with pp that you should offer more foods to her starting at breakfast. If you are having fish for dinner, then feed her a lasagna (the trader joe's lasagna used to be pretty good) or enchiladas or SOMETHING. Not cheese cubes.

You and your dh obviously are very healthy eaters as adults- your dd is neither an adult, nor healthy.

I agree with pp who said to make her scrambled eggs, bacon, and either a waffle (again frozen waffles are fine) with syrup or toast with butter and jam or nutella. Send a bagel with thick cream cheese on both sides to school with her and tell her to eat that at snack time.

After school, give her a shake with real ice cream and a side of oven baked french fries or drive through McDonald's. If she has dance, give her chocolate chip and peanut butter granola bars.

When she has steak, do an herb butter on top. Ice cream for dessert every night.

eggs with butter, toast with butter, avocado, cheese, olives, nutritional shake, whole milk, mashed potatos sound shocking?

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, what is a typical diet like each day for your DD? For you and your DH?

Here’s a hands-off day:

Whole grain cereal with whole milk
PBJ on whole wheat
Sliced apples or bananas
Toast with butter
Orange juice
Cereal with whole milk
Grilled chicken
Sweet potatoes with butter
Green beans
Ice cream

Here’s a hands-on day:

Soft boiled eggs with butter
Toast with butter
1/3 Avocado
Orange juice
Protein bar
Creamy cheesy mashed potatoes
Handful of nuts
Red peppers
Chocolate power waffle
Ensure Compact
Mango slices
Cinnamon bun
Cheese cubes and buttery crackers
1/3 Avocado
Kalamata olives
Carnation Instant Breakfast with whole milk

As for calories, I really don’t know. DD’s dietician does not recommend counting them but focusing instead on macronutrienrs food groups, with a focus on fats and proteins.

DH and eat pretty well. Oatmeal with fruit and nuts, big salad with protein for lunch or leftover dinner from the night before, nuts and banana or yogurt with granola for snacks, salmon or other protein with rice or potatoes and a vegetable of some sort, dark chocolate sometimes for desert. We eat dinner together as a family, with DD mostly eating what we do. DH drinks coffee, wine and/beer. I drink coffee and tea.

OP, this is really shocking to me - both the hands off and the hands on day. I don't know what is in the protein bar and I don't know what a chocolate power waffle is, but both of of these meal plans look like someone who is on a diet.

You can buy already cooked bacon at trader joe's. I agree with pp that you should offer more foods to her starting at breakfast. If you are having fish for dinner, then feed her a lasagna (the trader joe's lasagna used to be pretty good) or enchiladas or SOMETHING. Not cheese cubes.

You and your dh obviously are very healthy eaters as adults- your dd is neither an adult, nor healthy.

I agree with pp who said to make her scrambled eggs, bacon, and either a waffle (again frozen waffles are fine) with syrup or toast with butter and jam or nutella. Send a bagel with thick cream cheese on both sides to school with her and tell her to eat that at snack time.

After school, give her a shake with real ice cream and a side of oven baked french fries or drive through McDonald's. If she has dance, give her chocolate chip and peanut butter granola bars.

When she has steak, do an herb butter on top. Ice cream for dessert every night.

Anonymous wrote:Prosperity takes 4 insurances for their partial hospitalization program. Not sure about their intensive outpatient program. Only one insurance for their outpatient services.

I’m the one who uses them now. In your position, I would seriously read up on ARFID. It’s avoidant/restrictive food intake disorder. One of many examples would be a child who had a horrible stomach virus and now doesn’t eat enough due to an intense fear of vomiting. Nothing to do with wanting to be skinny, but medically unhealthy none the less.

I would do a few sessions at Prosperity just to get a second opinion. They require medical stability and you have to sign off on them talking to your child’s other doctors. They do have a psychiatrist there, but you may decide to start with a nutritionist. Talk to the director or even whoever handles scheduling about your specific situation and get a suggestion for a good fit. My experience is that Susan K is magical. SHe is sweet and gentle. Just the person who finally got my daughter to open up. Maybe after a few sessions, they could recommend someplace closer to you (or tell you what to watch out for).

We saw the GI team at Georgetown. They are phenomenal for GI issues, but not so much eating disorders. I’m afraid this may be common among MDs, since EDs are both physical AND psych, and doctors don’t generally specialize in two fields like that.

And I’m so sorry you are dealing with this. I feel fear, stress, crushing guilt, frustration, anger. I just want to validate that this is extremely hard.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:12:04 - sorry, but our experience has been that most doctors do not know how to treat eating disorders (or even evaluate for them). We started seeing doctors when DD dropped from 103 down to 90. They asked her to try to eat more and told me good luck. DD nodded her head and then lost more weight. They monitored her continued weight loss and did NOTHING until they forced her to stay in the hospital for three weeks.

I now know that the pediatrician should have put her on a strict eating program at 90 pounds. We could have recovered much better and faster. Instead she got as low as 82 pounds (and then we were sent straight from the GI to the hospital - yet they said nothing but “try to eat a little more” when she got down to 84 pounds) and we’re looking at long term bone issues.

I am 12:04 and your story is actually exactly why I'm saying OP needs to aggressively follow up with the doctors to correctly understand their take on the situation, and get an EXPERT second opinion on the eating disorder/feeding plan (any suggestions?) It sounds like Children's is headed down the same route of "fine, fine, fine OMG CRISIS!!" that you faced.

Where would you recommend seeking a second opinion? I thought Children's was among the best. Insurance is an issue for our family, so we will need to be sure we are covered. And yes, that is my fear about our team, especially since I feel our GI doc is done with us now that he has ruled out other causes.

I am still unclear whether DD has an eating disorder or not. Her therapist and dietician are monitoring this closely. They talk with her alone, with me alone, with us together. They do not feel she is withholding or wants to lose weight. If anything, her cousin's experience has made her terrified she will die if she can't eat more. That is why she cries. Not because she doesn't want to eat but because she knows she needs to and can't. She is scared of ending up in the hospital on a tube. She is frustrated with her body that she can't eat more. As I write this, I am starting to come around to the feeding tube idea. There's just so much stress and fear.

'm not opposed to seeking treatment at a place that specializes in eating disorders because the same approaches might be very helpful to us. I am a little concerned about this becoming a self-fulfilling prophesy, and I am prepared to battle DH and DD about it, but we will do what is necessary. Please send recommendations. I have left a message at Prosperity in Herndon - thanks for that - I don't think they take insurance. We are in MoCo but will travel.

Anonymous wrote:

Anonymous wrote:OMG everyone needs to lay off PP and acting like she must immobilize and force-feed her child cheeseburgers or else. I am pretty attuned to people's writing styles that suggest they are pushing their eating issues onto their kids, and I see nothing at all of that in OP's statements. All I see is that she has rather disjointed care at Children's, without being given a good sense of plan A and plan B, and when this becomes a medical crisis that would necessitate a feeding tube. (Which - is not surprising about Childrens. Over on the special needs board you can talk to MANY parents who deal with issues at Childrens with coordination of care and administrative issues.)

The thing OP should do is beat down the DOCTOR'S door to figure out why things are so serious as to have the feeding tube on the table. OP's original question was borne out of the confusion of the mixed messages she's getting from her DD's team. On the one hand -- keep going and come back in 3 months! On the other hand -- we may have to do a feeding tube! Those two things don't really match up.

If I were OP I'd also get a second opinion with respect to the eating disorder, at CHOP or in Boston or wherever the #1 eating disorder place is.

This is OP and thank you. I appreciate your assessment and defense. But I also understand why others are questioning my own behavior. I've questioned it too. We are never far removed from ourselves. I am a professional dancer with all that goes with it. I am controlling, exacting, perfectionist, health conscious, driven. I have tried very hard to model healthy behavior and to never expect DD to conform to some standard of perfection. I am aware of my power over DD and try to be more gentle with DD than I was with myself in my younger days. More importantly, I try to be more forgiving and gentle on myself now because that's modeling positive behavior too. I threw away my scale when DD was born. We never talk about good foods or bad foods. We don't talk about weight or fat but about health and strength. I have a lifetime of experience with nutrition for a grown active woman, but feeding a growing child is not my strength, clearly. Sometimes I feel like an idiot that what seems to come naturally for so many, doesn't for us. But I am learning.

I agree our care has been disjointed. For 10 years, DD's pediatrician said not to worry, she will eat when she's hungry. My family told me I was crazy to worry so much. Her endos at NIH concluded her growth delay is multi-factoral (constitutional and nutritional). Only the latter requires intervention. Her GI doc, who is one of the best according to many posters on this board, ruled out underlying illness and referred us to the nutritionist and psychologist, whom he trusts and consults regularly. They developed a hands-off plan that didn't work. The feeding tube suggestion, coupled with a wait-and-see approach, sent a mixed and confusing message. But we are trying something new now.