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SHEREEN - posted on 05/23/2011
My son needed about 1 year of staroids. it was hard to wean him off of them but he is doing good now. just got a cold and it was still a little croupy but no meds this time. i remeber the first year of his life that all i was woried about is him coughing. my heart would stop just to see if it was croupy cause then that ment we have to take the 5 hour trip back to Boston, and he would have to have another surgery. my son just turned 2 in Febuary.
Amy - posted on 04/04/2011
My daughter was born Sept. 18, 2008. At 6 weeks old she started having breathing problems. After going to the doctor and being transferred to St. Louis Children's hospital she was diagnosed with a subglottic hemangioma. Her airway was 80% blocked. The dr. did laser surgery to scar down the H. She had 3 more surgeries before she was 6 months old. She was also put on propranolol shortly after her 2nd surgery. We still continue to see our dr. in St. Louis for regular check ups.
Deann - posted on 03/26/2011
Yes, my son has one too. Have only found one other person online. My son has only required medication (Propranolol). He had one round of steriods at 4 weeks old and started Propranolol. Nothing else since and he is now 7 months old. Nervous to try to wean off meds. Cranofacial dr says can start weaning of Propranolol, but ENT says to wait at least until 12months old.
How is your son now and how old is he?
Oh, my son also has "H' inside his mouth/gumline/lip/tongue/parotid gland, and front of his neck. Cant really see anything on the outside except the scar on his lip where it ulcerated at 4wks old.
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