Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You and your DH do eat healthily but you are modeling basically dieting behaviors to your DD. Here is how you start the day for your dd.
Huge breakfast:
several rashers of bacon
3 eggs
bagel with nutella or cream cheese on.
Juice and ensure if possible.
You wake her up early and you make it and she starts by eating more and more, if you need you eat the same. She won't eat all of it the first week, but you do this.
I hate to say this, but your eating is modeling your DD's eating. Sounds like you and your DH are very healthy food conscious, which would normally be awesome! but not for your DD, not in her case. Go to Texas Road House and you and your DH model eating a whole steak and baked potatoes and bread and a salad. I answered in earnest but your menu posting makes me wonder, if you are serious about your DD's issue or maybe a troll?

+1

Huh? Troll? Why? Because we value nutrition? DD’s hands on diet was developed by her dietician based on the favorite foods DD shared and committed to eat. We made a contract with her doctor based on what is sustainable and healthy. We haven’t been doing this long enough to evaluate if it’s successful. DH is an athlete. I am a dancer. Nutrition is important to us, but we are aware DD’s needs are different from ours. Texas Roadhouse? Really?

Yes, really. OP you don't seem to understand the severity of your DD's issue or you have overstated her problems. Is she a failure to thrive or not? Sure, choose, Marx' steak house, but feed your kid. If her nutritionist is doing this the healthy way... is it working? I am just a stranger on dcum, you are right not to listen to me, but ask yourself if this is working? If it is working... why is there a feeding tube talk? If your DD is not gaining weight your way and dietitian's way is there any open minded solution here? I say seek another nutritionist. Sadly my DS's one moved to New Orleans. I will be grateful to her for the rest of my life. I wanted it done healthy way, we tried, didn't work. She told us to do it this way, and it eventually worked. DS is back to eating healthily now. Didn't make him a junk food addict for the rest of his life. Anyway, I said enough, I don't think your DD is eating enough based on BTDT and my DS grew. You do you. My DS is an athlete too, you write your DD does ballet, daily? How many hours per week? And yet she is eating like a bird when she should be eating more than preteen that is not active. I tried to explain what worked, but you can't help people that don't want help.

OP, I have followed this whole thread and tried to offer helpful advice. The more you have posted about your own diet, your daughter eating red peppers, etc. the more I think this pp is onto something. I suspect you have your own issues with food that your daughter is picking up on in addition to her own issues. Your daughter's diet is not normal for a pre-teen kid. They can eat some level of crap and be fine if they are active and burn a lot of calories. Wanting to eat healthy is admirable but it hasn't worked. Why are you making food you know she doesn't like? Let her try anything and everything until you find foods she will eat. Go to the store and let her pick out all the crap her friends like. When was the last time your daughter had Dominos, Chick fil A, Five Guys etc? She needs calories not fish and red peppers.

You’re just starting to realize that OP is batsh$t crazy? Really???

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.

There is no doctor on the face of the earth who wouldn’t be doing everything in his/her power to fix this.
This story is not adding up. OP - are you bringing your DD to the doctor regularly?? Or are you just taking her to a dietician?

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.

Another idea is to give her some potato chips with ranch dip made with real full fat sour cream to snack on while she does her homework.

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.

Also I see she likes fruit. Give her mangos on vanilla ice cream, strawberries on ice cream, with full fat whipped cream.

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: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.

OMG I am so sorry this happened to you!

Anonymous wrote:Her DD's height is not as much of an issue as is her weight. In fact her DD is only 2 inches shorter than average girl her age.
https://go4fun.com.au/why/bmi-calculator

But she is wearing size 7 clothes and she is 11. She is tiny.

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.

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.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You and your DH do eat healthily but you are modeling basically dieting behaviors to your DD. Here is how you start the day for your dd.
Huge breakfast:
several rashers of bacon
3 eggs
bagel with nutella or cream cheese on.
Juice and ensure if possible.
You wake her up early and you make it and she starts by eating more and more, if you need you eat the same. She won't eat all of it the first week, but you do this.
I hate to say this, but your eating is modeling your DD's eating. Sounds like you and your DH are very healthy food conscious, which would normally be awesome! but not for your DD, not in her case. Go to Texas Road House and you and your DH model eating a whole steak and baked potatoes and bread and a salad. I answered in earnest but your menu posting makes me wonder, if you are serious about your DD's issue or maybe a troll?

+1

Huh? Troll? Why? Because we value nutrition? DD’s hands on diet was developed by her dietician based on the favorite foods DD shared and committed to eat. We made a contract with her doctor based on what is sustainable and healthy. We haven’t been doing this long enough to evaluate if it’s successful. DH is an athlete. I am a dancer. Nutrition is important to us, but we are aware DD’s needs are different from ours. Texas Roadhouse? Really?

Yes, really. OP you don't seem to understand the severity of your DD's issue or you have overstated her problems. Is she a failure to thrive or not? Sure, choose, Marx' steak house, but feed your kid. If her nutritionist is doing this the healthy way... is it working? I am just a stranger on dcum, you are right not to listen to me, but ask yourself if this is working? If it is working... why is there a feeding tube talk? If your DD is not gaining weight your way and dietitian's way is there any open minded solution here? I say seek another nutritionist. Sadly my DS's one moved to New Orleans. I will be grateful to her for the rest of my life. I wanted it done healthy way, we tried, didn't work. She told us to do it this way, and it eventually worked. DS is back to eating healthily now. Didn't make him a junk food addict for the rest of his life. Anyway, I said enough, I don't think your DD is eating enough based on BTDT and my DS grew. You do you. My DS is an athlete too, you write your DD does ballet, daily? How many hours per week? And yet she is eating like a bird when she should be eating more than preteen that is not active. I tried to explain what worked, but you can't help people that don't want help.

OP, I have followed this whole thread and tried to offer helpful advice. The more you have posted about your own diet, your daughter eating red peppers, etc. the more I think this pp is onto something. I suspect you have your own issues with food that your daughter is picking up on in addition to her own issues. Your daughter's diet is not normal for a pre-teen kid. They can eat some level of crap and be fine if they are active and burn a lot of calories. Wanting to eat healthy is admirable but it hasn't worked. Why are you making food you know she doesn't like? Let her try anything and everything until you find foods she will eat. Go to the store and let her pick out all the crap her friends like. When was the last time your daughter had Dominos, Chick fil A, Five Guys etc? She needs calories not fish and red peppers.

The day I gave was not an average but one day - a snapshot of our last week. Yes, we offer fast food, which she doesn't like much but will eat. Chicken nuggets, fries, donuts, burritos, tacos, pizza. We keep potato chips, cookies, hard pretzels, nuts, pop tarts, ice cream and yogurt in the house at all times and she is always welcome to snack. No foods are off limits in our house. In fact, her best friend practically lives at our house because she loves the snacks her mom won't buy. I think I buy snacks for her as much as for DD, who eats very little. We go shopping together. We make lists of her favorite foods together. We cook together. DD likes to be home and we like to eat as a family, but I am starting to think we should go out more.

My comment about red peppers was to illustrate that she needs more education about how to fuel her body. I was surprised at her response to eat those first and have since stopped giving her veggies in her lunch.

And for the record, I have no problem with Texas Roadhouse. I've never heard of it. My reaction was to the quantity, not quality, of the food. There is no way she would eat that much.

Anonymous wrote:I was given recipes for high calorie shakes from our doctor. Maybe try one of these after ballet? It's pure, pure calories (600-1000 calories each but she probably won't eat it all). Just mix in a blender.

1. 1/2 c heavy whipping cream, 3 T pb, 3 tb chocolate syrup, 1.5 c chocolate ice cream (full fat)

2. 1 c whole milk, 1 c canned peaches, 1 c vanilla ice cream, 1/4 t each salt and vanilla

3. 3/4 c orange sherbert, 2 T corn syrup, 1/2 c 7-up, 2 T corn oil.

Thanks, I will!

Btw, BMI accounts for height.

“Everyone thinks she looks vibrant and fine, just short” and “BMI of 0.1” is not consistent. I have a hard time reconciling the two.

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.