Regression?

Our daughter had a follow-up appointment with her dermatologist on Monday. It's hard for me to believe it's been a month since we've seen him. I had such high hopes for this appointment. She's made such good progress and we've slowly been lowering her oral steroid dosage. I truly thought that the oral steroid which compromises her immune system would be completely stopped. Unfortunately, this was not the case.

It has been exactly a month since our daughter underwent the outpatient procedure where they injected steroid into her left eyelid, cheek and back of the neck. This medication typically lingers for 3-4 weeks. We are now at the end of that timeframe. The dermatologist noted that our daughter's left eye looked a little more puffy today than he remembered it looking the last time he saw her. He also noticed that her left cheek felt warm (which indicated additional blood flow to the area). He is very interested to see what her body will do now that the majority of the injected steroid is out of her system. He asked us to watch her very closely over the next week.

Because of these indicators, the dermatologist did not adjust our daughter's medications at all. She is still on Propranolol, Zantac and what he refers to as a "spit's worth" of the steroid, but he admitted that we may need to increase the oral steroid dosage again should the swelling return. He also talked to us about a topical medication called Timolol which is a beta-blocker like Propranolol, but in the form of a cream. This may be something we try in the near future but will most likely only benefit those hemangiomas that are closest to the surface of the skin.

So, for now, because our daughter will remain on the steroid, she will not be able to have the live Rotavirus vaccine. She will also continue to have a compromised immune system which means she shouldn't be around other children.

Thank you for your continued prayers for our daughter and our family!