Endocrinologist & Build a Bear

Friday we were lucky to get a cancellation apt. and get in to see the Endocrinologist. A miracle really. We reviewed past doctor visits and current bone age scans. A bone age is an X-ray of the hand that helps determine where the bones are at in development. Emma's first bone age was done at age 2 and her bones were only developed to a nine months old. I learned some bone ages are straight forward and you can tell the average age of a kid. Some are not. Emma's is one of those that is not. Some of the bones are 10 months delayed others are 1 1/2 years delayed. Typically a kid with hypopituitarism would be 2 years behind or more. Also we look at the growth curve of Emma's over her lifetime. While she is, and has been since she was 10 months old, been below the growth chart, she has always continues to grow at her own pace. A child with Hypopituitarism will have a sudden drop where they fall off the growth curve drastically. SO WHAT DOES IT ALL MEAN!

Emma will probably not be diagnosed with Hypopituitarism. She has to do blood test and another MRI with contrast of her Pituitary gland, to rule it out and to determine any other problems

What does that mean... The cases where growth hormone resolved a child's chiari and syrinx the child had hypopituitarism. So basically we are traveling on a road less, if ever it wasn't documented traveled.

I explained we understood that growth hormone treatment was a long shot. We have two neuro-surgeons, who agree it is reasonable to try, I figure if it resolved that would be amazing. But if it even just helps a little it might make it so brain matter doesn't have to be removed, or the surgery doesn't have to be as invasive.

She did mention we might have a hard time getting insurance to approve growth hormone. I told her i had talked to the drug companies and they will supply 6 months of treatment on a trial basis. So thats were we are at. We have another apt. in 2 months.

So since it was just Emma and I and it is rare we get to be out just us 2. We got lunch after the apt. and went to build a bear to spend her gift card. She was in heaven and the newest member of our family is Snuggles. She is well loved already.