Infantile Deep Nasal-Tip Hemangioma

We're done! Today was our last appointment in Indianapolis at the Riley Children's Outpatient Center. We have been weening Lincoln off propranolol slowly for 2 1/2 months now. No more medicine, syringes, watching the clock, or trips to Indianapolis just for doctor's appointments.

For those of you that may not know....it started a little over a year ago at the end of November of 2010, when Lincoln was almost 2 months old. I had noticed Lincoln's nose become bluish-grey. I remember thinking it might be a bruise, but after a few days the term "hemangioma" popped in my head. I swear it was the "mother's intuition." I remember calling Vance and telling him what I thought it was. We saw our pediatrician about this a couple days later but she initially said to wait another 2 months to see what might happen until his 4 month appointment. But after I did some google images searches (which really scared me!) I knew we needed help right away. I called the peds office again and they said I could bring him in that day. It had gotten worse since the week earlier, so she made a referral to a pediatric dermatologist in Indianapolis. I am really glad I was a little pushy to get him in earlier and not wait longer. Often children have to wait up to 6 months to get in, but with the rapid-growth nature of this condition, we had to wait 5 weeks.  In those five weeks Lincoln's nose got a lot darker and just about tripled in size, or at least it seemed.

Lincoln started on propranolol for his deep nasal tip hemangioma on January 25th of this year. We have been giving him doses (that keep up with his weight) three times daily since then, once every eight hours.  Doing the math, that means that we have given this medicine at least 945 times!! Vance and I have been thrilled with Lincoln's progress and seeing the hemangioma virtually disappear. We are so thankful for the doctors and nurses that have worked with him! We also are huge fans of this type of approach/medicine for children with a deep hemangioma in its rapid growth stage. It has seriously worked a miracle for us.

Vance was a little worried a year ago, but I was even more worried, with a few tears over this and not knowing how large this hemangioma could grow, and what that could mean for Lincoln emotionally and socially. For me, I remember last December and January, having several nights laying in bed not being able to fall asleep because I was so worried about this.  But honestly, all those fears are gone for the both of us and we have been so pleased with the results.

Dr. Anita Haggstrom has been a great pediatric dermatologist. Today we saw her for the last time. We didn't get a picture with her, but we did get a picture with the nurse, Melissa Bebe. She has been the sweetest to work with. I really am going to miss them. Its funny how they can mean so much to you, mostly because of what they have done for your child.

This is Lincoln with his nurse, Melissa. She gave him a couple little gifts (a kaleidescope and a coloring book) that he was loving at the moment.

This is the front of the Riley Outpatient Center. We won't have to go there every month anymore, thankfully.

We can throw away the 100 or so syringes we have and his medicine too!

Lincoln's hemangioma might be visible if you look really closely. Most of our noses are made of a firm cartilage on the tip, but Lincoln's is very very soft. The best way to describe it is like the feeling of bread dough that has risen. The hemangioma turned into fatty tissue that may or may not go away, and is on top of his cartilage. So Dr. Haggstrom advised us to watch his nose as it grows with the rest of his body. If it ever looks abnormal, we can see a plastic surgeon for a possible rhinoplasty, maybe before he enters kindergarten. At this point, we think it looks so normal that hopefully that's not an issue.


I can definitely say this was a GREAT day!