Wednesday, April 3, 2013

She looks fabulous!

Our family had a great time at the Houston Children's
Museum over spring break!
That's how we were greeted today by our daughter's dermatologist this morning   He walked in the door, took one look at her, and said, "She looks fabulous!"  It had been 5 months since he'd seen her and he couldn't believe how much she's grown.  He took lots of time to look closely at her face, neck, cheek, and eye and was very pleased with her progress.  She still has hemangioma in all of these places, but they appear stable.  It's been a long time since we've adjusted her Propranolol dosage, but she's gained enough weight that she's now on less than 1 per kilo.  He didn't want to decrease her Propranolol and asked us to keep him informed if we began to see growth again (because he would increase her dose if it is needed).  I feel very comfortable that we're slowly weening her off the medication as she grows, even though we're not adjusting her doses.  What a great plan.

We also talked about several other questions:
 -  When to schedule another MRI?  He wants to consult with her other specialists to help make this decision.  He isn't interested in seeing her hemangioma in this scan, but is more interested to see her carotid artery.  She's has grown a lot in height and weight since her last scan (January 2012), so it is likely we'll scan again in the near future.
-  Is she still one of the oldest children on Propranolol for PHACE Syndrome?  She is still the second oldest child he has had on Propranolol, but he is not concerned.  We talked in depth about some recent consensus meetings regarding the use of Propranolol, and the decreased concern about blood sugar and blood pressure.  He feels very confident that Propranolol continues to be the best medication for her.
-  Do we need to schedule any follow-up visits with our daughter's other specialists?  He did not feel that it is necessary for us to visit the cardiologist or neurologist unless we have specific questions or concerns regarding her development.  We already have an appointment with her ophthalmologist for later this summer to follow-up regarding her vision.

Days like today are encouraging and remind us to be thankful for our daughter's progress!  She truly is a miracle!

1 comment:

  1. Jennifer, she does look fabulous! What a cutie! I'm sure your doc is very connected with the medical community, but the peds ENT who managed Danielle's Propranolol was Dr. Anna Messner at LPCH at Stanford. We did take Danielle off P when Danielle was about 18 months, old but Dr. Messner said that if Danielle needed to go longer, Dr. Messner wasn't worried about that at all. Since going off P, Danielle has had some small rebound growth in an h. behind her hair on her neck. It's small, no one can see it, it's not a problem. I was so anxious to get Danielle off P, but from this side I can see it's good she was on it as long as she was and even if she had to go longer, that's OK. Best of luck to you! So happy for your good news!

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