How much does she weigh?

Anonymous wrote:I can't recommend for or against a feeding tube for your child but we fought like this for years and when my daughter was 10 and still only weighed 39 pounds and was the size of a four year old, we made the decision as a family (including her) that she needed the assistance of a feeding tube to get enough calories.

It has helped so much. She still eats by mouth, whatever she wants, but she has grown and gained 15 pounds. She's around 53 pounds now at 13, and still terribly petite, but we no longer worry about her dying from any infection or illness. She gets an overnight feed and there is not so much pressure on her, no more screaming fights about what she ate, no more worry that if she has a fever and loses 1 or 2 pounds someone will call CPS.

And your child is 11. She is going to inevitably hit puberty, which means a growth spurt. Her body cannot keep up with that growth spurt. You are running a race against time. So I see so many positives in a feeding tube. There are many myths about tubes -- the child will forget how to eat (not true); infections (no).

This is something that could really help normalize your child's life. The posters recommending bananas and cheese and so forth have no idea what it is like to have a child like this. If bananas and chocolate chips worked, she wouldn't be this thin.

Thank you. I know the posters with food suggestions are trying to be helpful. I really wish that’s all it took. Maybe with DD’s cooperation, bananas will be the magic bullet. 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? Damn this is hard.

In fact, DD’s medical team believes that her anxiety is not an underlying chemical issue but a natural consequence of all the testing and stress about her eating and growth. Her symptoms only started when we began this medical odyssey. Before then she felt strong and healthy. Now she feels sick. That is why therapy rather than drugs is the treatment plan and why I am reluctant to add more medical invervention than is absolutely necessary. She is finally on board with taking this seriously, and her cooperation is essential.

As for an eating disorder, it is very much on my mind and we are on thin ice as it is. Eating disorders are about control. Right now she doesn’t have much. And if I put a tube down her throat against her will, there could be lasting repercussions. This is why her therapist, who specializes in eating disorders, advised caution. Somehow we need to shift this conversation from eating because I will hassle her until she does, to eating for her life. BTW, her 13-year-old cousin almost died last year from an eating disorder. She had a heart attack and spent a month in intensive care on a feeding tube. That is what we all associate with feeding tubes and the threat looms large with DD. 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.

I greatly appreciate everyone’s advice and concern. It’s been a rollercoaster and hearing multiple perspectives has been helpful.

I can't recommend for or against a feeding tube for your child but we fought like this for years and when my daughter was 10 and still only weighed 39 pounds and was the size of a four year old, we made the decision as a family (including her) that she needed the assistance of a feeding tube to get enough calories.

It has helped so much. She still eats by mouth, whatever she wants, but she has grown and gained 15 pounds. She's around 53 pounds now at 13, and still terribly petite, but we no longer worry about her dying from any infection or illness. She gets an overnight feed and there is not so much pressure on her, no more screaming fights about what she ate, no more worry that if she has a fever and loses 1 or 2 pounds someone will call CPS.

And your child is 11. She is going to inevitably hit puberty, which means a growth spurt. Her body cannot keep up with that growth spurt. You are running a race against time. So I see so many positives in a feeding tube. There are many myths about tubes -- the child will forget how to eat (not true); infections (no).

This is something that could really help normalize your child's life. The posters recommending bananas and cheese and so forth have no idea what it is like to have a child like this. If bananas and chocolate chips worked, she wouldn't be this thin.

Anonymous wrote:

Anonymous wrote:OP have you or her therapist explored whether she is restraining her eating? You mention that she feels full very quickly and that can be a deflection that becomes a kind of self-fulfilling prophecy. I have boys so I can't speak from direct parental experience, but I've been surprised at the early onset of girls' weight anxiety. I have friends whose daughter was in counseling from early elementary for an eating disorder. She seems to be doing great now in middle school. Apologies if this is wildly off-base; you sound like a wonderful parent and I hope you can find the right approach to help your daughter's growth issues.

I don't think you are off base because her dd is several years behind in growth and the doctors said it is from not enough calories.

OP, If the psychologist or therapist is not part of the medical team, then I would switch to one who WILL be part of the medical team.

I also thing you need to suck it up and get it together and see a psychiatrist and seriously consider putting her on meds for the anxiety. YES, you could back off talking about food and pushing food, but SHE IS NOT GROWING. The therapist you have now does not have the luxury of weighing the anxiety is more important than her health.

I wouldn't get a new nutritionist, I would get a therapist who is on board with the medical team you have already gotten together. And I'm sorry, I know it is complicated to figure out meds with such a large number of doctors but you need to deal with it.

I would get her on meds for anxiety before trying a feeding tube, that is for sure!

DD’s therapist is part of her medical team at Children’s, working in close contact with her GI and dietician. Anxiety meds are not recommended at this time.

Anonymous wrote:Is she on ADHD medication?

I'd get rid of that to start with

She has a team of doctors! Pretty sure she isn't on any kind of medication that is an appetite suppressant!

Anonymous wrote:OP have you or her therapist explored whether she is restraining her eating? You mention that she feels full very quickly and that can be a deflection that becomes a kind of self-fulfilling prophecy. I have boys so I can't speak from direct parental experience, but I've been surprised at the early onset of girls' weight anxiety. I have friends whose daughter was in counseling from early elementary for an eating disorder. She seems to be doing great now in middle school. Apologies if this is wildly off-base; you sound like a wonderful parent and I hope you can find the right approach to help your daughter's growth issues.

I don't think you are off base because her dd is several years behind in growth and the doctors said it is from not enough calories.

OP, If the psychologist or therapist is not part of the medical team, then I would switch to one who WILL be part of the medical team.

I also thing you need to suck it up and get it together and see a psychiatrist and seriously consider putting her on meds for the anxiety. YES, you could back off talking about food and pushing food, but SHE IS NOT GROWING. The therapist you have now does not have the luxury of weighing the anxiety is more important than her health.

I wouldn't get a new nutritionist, I would get a therapist who is on board with the medical team you have already gotten together. And I'm sorry, I know it is complicated to figure out meds with such a large number of doctors but you need to deal with it.

I would get her on meds for anxiety before trying a feeding tube, that is for sure!

I'm the PP that was posting about feeding tubes earlier. I have seen SO many kids with them and they can be so helpful to the whole family. Even families with lower levels of education can feed their child at home with training. As I said above, if it becomes medically necessary then I would not hesitate to do it for my own child. From the OP's posts it truly does seem like this is a failure to thrive situation and other options may need to be explored at some point.

Is she on ADHD medication?

I'd get rid of that to start with

OP have you or her therapist explored whether she is restraining her eating? You mention that she feels full very quickly and that can be a deflection that becomes a kind of self-fulfilling prophecy. I have boys so I can't speak from direct parental experience, but I've been surprised at the early onset of girls' weight anxiety. I have friends whose daughter was in counseling from early elementary for an eating disorder. She seems to be doing great now in middle school. Apologies if this is wildly off-base; you sound like a wonderful parent and I hope you can find the right approach to help your daughter's growth issues.

I would be worried about the discomfort and infection risk of a tube.

I would also get several more opinions on the tests your daughter has already gone through, OP. This is serious enough that it warrants a lot of brains thinking about it.

Does she like to eat? Does she have a favorite food? Is there any part about the mechanics of eating that she is uncomfortable with?

My son has had problems with growth and appetite, and we have supplemented with shakes and olive oil (we used to do heavy cream, which ounce for ounce is the most caloric food there is). However he is not nearly as thin as your daughter.

Is she on Prozac?

She needs to eat to grow. See a nutritionist. I am surprised about the feeding tube. My ds was below 1% in both at 13. Not a single dr sugessted a feeding tube.

Anonymous wrote:Were either you or your husband short and skinny as kids or were you both always tall and very thin? If you were short, skinny kids who ended up being tall adults I wouldn't worry as much. But if you were both always tall there is something seriously wrong. Have you really ruled out all medical conditions? I would visit specialists like gastroenterologist, endrocrinologists for another opinion.

DH and I were both tall and painfully thin as kids. I remember getting letters home from the school nurse - my grandmother accused my mother of starving all her kids. This is different. Late puberty runs on DH’s side, and that’s one possible explanation but doesn’t tell the whole story. DD has been tested by endocrinologists who ran every kind of blood test, a radiologist who measured her growth plates, and a top gastroenterologist who performed an endoscopy and biopsy. All conclude there is no underlying illness.

Were either you or your husband short and skinny as kids or were you both always tall and very thin? If you were short, skinny kids who ended up being tall adults I wouldn't worry as much. But if you were both always tall there is something seriously wrong. Have you really ruled out all medical conditions? I would visit specialists like gastroenterologist, endrocrinologists for another opinion.