Hi
I wanted to write a few words for parents out there whose child has a hemangioma and a medicine treatment called Propanolol.
When my daughter was born in Janaury 2009, a hemangioma developed on her face -- on her eyelid, temple and the side of her face to be exact. It started off as a purplish, blue flat mark. Almost like a bruise. Within one month it started to rise and become increasingly red. I had no idea what to do. The doctors kept telling me it was 'strawberry mark' and will go away.
It didn't. In fact, it grew. It was a dark red rasied mark. Her eyelid was quickly closing shut and her cheek was swelling. Still - I had no answers. She didn't seem in pain. At least that gave me comfort.
For three months, I went to doctor after doctor after doctor. Finally I found a doctor who said to me " listen, I am not specialized in this area so I am going to refer your daughter to a general surgeon".
at least I was getting somewhere.
We went to see the Surgeon, who took one look at my daughter and immediately sent us to see a dermatologist. I am very very luckly to live in a city that has a specialized Children's Hospital. Once you get referred in, you have many resources.
We saw the dermatologist that day. Who explained what a hemangioma was. His concern was that it appeared my daughter had a segmented one. The mass commenced behind her eye socket - flowed to the eyelid, cheek and inside her mouth. This was a sign of a possible disease called PHASES Disease.
It took a lot of testing - xrays, ultrasounds, MRI, cardiograms and countless consultations. I also have to admit that I was adament that some kind of treatment be done. I pushed and pushed. I even ran aroudn the hosital chasing my daughters medical records for doctors. I wasn't waiting for them to be 'sent' along.
I was very lucky that her dermatologist specialized in hemangiomas and had started using a drug called Propanol to treat the hemangioma. Propanol is a very old drug -- most commonly used for heart issues. It lowers the blood pressure. It was found that it has a positive result in decreasing hemangiomas. What I found frustrating is that there is no research of this on the internet. No one to provide their experiences. I can't tell you how nervous I was. But it was something that I felt we had to do.
When my daughter was 5 months old, we started the treatment. Three oral doses a day for one year. I had to check her heart rate three times a day as well.
We also had to go into the hospital every second day to have her vitals checked. And blood work done weekly. Thank goodness, she always checked out ok.
I admit -- it was tiring. somedays, I didn't want to go the hospital AGAIN!
This was my life for one year. Everything revolved around my daughter, her medicine and the hospital.
I am very, very glad to report, that over time her hemangioma decreased. It was slight at first. It went from an angry red, to a softer red, then pink. Then it's size started to decrease. Over time, months in fact -- it faded.
She is now 100% off the medicine, and I haven't seen any side effects. The only thing I see is that my daughter is flowering -- minus the gigantic hemangioma on her face. She still has a faint pink mark. In time, I am told it will go away. I don't even notice it anymore. She is thriving and so am I.
I guess the point of this long winded story is to say that there is help out there. There are others in your same situation. We know and understand the emotional toll it takes on you. Don't be afraid to ask. And remember: YOU are your child's voice. I can't say enought about the benefits of using Propronol. I truly believe it saved my daughter.
