Thursday, April 22, 2010

+1365 Trip to NIH

Our trip was good. Here are a few highlights:

  • Cardiology: It looks like he has developed polycythemia. The doctors say it's caused by his VSD, however, in reading more about it, a secondary reason can be caused by steroids. He has many of the symptoms of polycythemia. The dermatologist at the NIH suggested to look back at his hemoglobin and red face history. Around the time his blood changed from O+ to B+, his hemoglobin slowly increased and his face grew redder. I've kept photos of him and his hemoglobin numbers on my blog so it was fairly easy to go back and see the differences.
  • Endocrinology: The NIH doctors would like David to be seen by an endocrinologist. The Endo doctor will monitor his hormone levels (growth and thyroid) and give recommendations.
  • Growth: David only grew 1cm in 1 yr. I'm so sad. He had an x-ray of his left wrist that shows the size of a 3-4 yr old. The doctor was happy that there is room for him to grow. They sounded optimistic that he will catch up but it's first important for him to wean off the steroids.
  • Nutrition:
  • Dermatology: Dr. Cowen took a skin biopsy. We will learn if his irritated skin is due to light sensitivity or GVHD. More info to come...
  • Other labs:
That's all for tonight. I'll write more later as test results come in.

Thanks for checking on us.

1 comment:

Sumathi said...

Hi Aimee,

Glad that the trip was good overall.
You and David are in my prayers. Hoping that David can get off the steroids soon, with resolution of the GvH.

Take good care,