Breathing Problems with hemangiomas

[smurph]

Thank God for specialists and that you were persistent until you got answers! I'm so glad she is doing better. Did you say that they diagnosed her with PHACES or not? Keep us posted for sure!!!

shannon

[tlampley3]

i am so glad you got some answers and that she is doing well! my daughter was also dx with phaces, but has no major issues so far. keep us posted!

[NevaehsNana]

Yes they did dx her with PHACES but we will be returning for another appointment to get more answers. I will keep you posted.

Thanks,
Kathy

[blessedmom10]

Oh so glad to hear things are going well now. I have not been able to find many others with subglottic H, so if you ever have any questions or just want to stay in touch, my email is deannmca@verizon.net. I would love to hear how someone else is managing this.

My son is 7 months old at the end of this month and he is still doing well on the Propranolol three times a day.

[blessedmom10]

May I ask about her PHACES dx. what testing did they do? Is she showing any other signs with her croupy sounds and facial H's. Your grand-daughter sounds just like my son, but when I ask about PHACES he said I didn't need to worry about that.

Blessed Mom
ds 7/29/10

[tlampley3]

my daughter was diagnosed with PHACES after an MRI, bronchioscope, EKG, and another test of her heart (can't think of the name right now. lol). She was diagnosed b/c the tests found a tiny hole in her heart, as well as an airway H. She also has hemangiomas on the side of her head, chin, lip, and ears. The dr. said there isn't a concern involved, but she also has a line extending upwards from her belly button that he believes is the (S) part of Phaces. Her scenario is one of the best cases, as they believe the hole in her heart will close on its own over time. She is also doing well on Propranolol and we hope to be able to wean at 1 year. Best wishes to you and your son!