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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]OP here: I just heard back from DD’s team at NIH who recommend monitoring her every six months, but not pursuing hormone treatment at this time. Her bone age is further delayed than we thought - 3 years at this point. So at age 11, she has the bones of an 8-year-old. Her doctors think this is caused by a constitutional growth delay and likely insufficient caloric intake. We were referred to a dietician to make sure she gets the right nutrients to maximize her growth potential. It will be hard wrestling her to eat - I feed her snacks and full fat foods, but she takes two bites and says she’s full. But we are relieved that her hormones look fine. The low IGF1 is most likely due to her low BMI. Thanks everyone for sharing your thoughts and experiences. They really helped during this uncertain time of waiting.[/quote]

I would take her to a good GI to make sure something else isn’t going on.  We had seen a team at NIH - with similarities to your story   and they missed the root issues.     Granted it was a complicated case - but often these are and have more issues beyond growth [/quote]

Some of those NIH doctors are very new and also very ‘head in the clouds’ - quoting the most research they have read but not considering that this child is having a problem that needs to be fixed immediately. Malnutrition from choosing not to eat is a big problem that needs to be fixed quickly.[/quote]

Kids often don’t eat much and say they are full but it maybe due to an underlying medical condition.  For example, crohns they may not eat much and not grow.  Sometimes kids can’t decipher between full and pain.  It’s not always a choice.  But a good experienced GI can sort it out.

Very much agree with you on NIH - our experience was with some very green folks.  Even when they brought in the senior folks, they missed  issues outside their research speciality   I think NIH can be great if you fall under a specific trial, but not for a consult and especially  when it’s a complex case.   Better to see top doctors who see a lot of varied of cases and interact with more kids        [/quote]

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