Thursday, October 15, 2009

Look how far I've come!


Since Jayda turns 6 months in two days I thought I'd show just how much change there has been in Jayda's hemangioma and her own growth too. Jayda had weighed 3.3kgs when born and had what appeared to be a small bruise on her cheek. Jayda is now just under 8kgs and her hemangioma had been through its own growth phase too. The hemangioma started to grow rapidly during the first few weeks that she was home from the hospital. It was no longer isolated on her left cheek,it had spread from her forehead down to her top lip,and also on her right forehead and eyelid. It had gone from a light pink to a fiery blistery red appearance.



At 2 months of age Jayda started her dose of oral steroids. This not only effected the growth of the hemangioma it also made Jayda grow ( Buddha baby) one of the many side effects of the steroids. As Jayda grew and the hemangioma faded,we had her heart assessed and were given the all clear to start her on Propranolol,she was 3 months old. This has less side effects and meant she could be slowly weaned off the steroids.



By 4 months of age Jayda was weaned off the steroids and her hard solid cheeks were softening. The propranolol was keeping the hemangioma from growing and it had started to appear a light pink again. Jayda was still growing at a good rate,but she will always be a lot bigger than what he older sister was like.



At 5 months of age Jayda is still on the propranolol and will continue to do so until the hemangioma starts its involution phase. The light pink appearance of the hemangioma isn't the only noticeable aspect of it,she has lots of spider like veins through it. These may not disappear with the use of the propranolol but we have been told laser treatment would most likely be needed later on. But for now our main focus is dealing with her PHACE Syndrome and the anomalies associated.

1 comment:

Unknown said...

Hi. I wanted to thank you for sharing your experience. As a physician who treats hemangiomas, Jayda is a great example of how *early* intervention with medical therapy has minimized the need for future interventions. Further, this type of hemangioma, called a "segmental" type, seems to be the respond the best with propanolol. Can't wait to see how things continue to progress. Good luck!

Gregory Levitin, MD
http://www.vascularbirthmarkcenter.com