End of September/ End of propranolol

The first picture are from the beginning of September.  Her birthmark still sticks out a little and is very red.

 As you can see in the next picture the birthmark is almost flat and is losing it's red tint.

 We have stopped the propranolol cold turkey.  Addison is not quite eleven months old.  The plan is now these birthmarks naturally stop increasing their size.  We don't need the propranolol to prevent any more ulcerations from forming.  We revisit the pediatric dermatologist in six months.  At this time she feels that no corrective surgery will be needed and that it will stretch with Addison's normal growth.  We will see changes in color, but that's it!

Almost September

Well it's almost September and way overdue for an update.  Addison is still on her medication three times a day.  During her last follow up with the pediatric dermatologist she said we will start to taper Addsion off the medication in about a month.  At that time we will talk more about possible surgery to fix the remaining tissue.  Her birthmark continues to shrink and is almost flat!  We still haven't had any side effects to this medication.

End of June update

I have to share this picture.  This is so important and such a milestone for Addison.  We couldn't even get her to be on her stomach a month ago.  She now seems comfortable and ready to explore on her belly.  She still doesn't roll over, but she can sit up.  This birthmark might be stunting her development in some ways, but she seems doing everything she can to catch up quickly. 

These pictures were taken the last week of June.  As you can see the birthmark is continuing to shrink, and is getting flat!

Addison's Story

This is the story of Addison's strawberry hemangioma.  We wanted to share our story to help others.  It seemed difficult to find the right help.  We are so thankful that we were able to find our pediatric dermatologist.  This is a work in progress.

http://en.wikipedia.org/wiki/Hemangioma

At birth her Strawberry was a faint pink mark on the right side of her chest.

Birth

By two weeks old it had become a much more visible mark as you can see.

5 months old

By 3 months old her birthmark had grown very large.   We had no other problems until around five months old.  This is when it began to open and bleed.

The skin would peel off a little more every time we had to change the bandage.  She was bleeding through at least three bandages a day.  It was getting blood all over her clothes and on the bed.  As you can imagine we were upset.  It had bleed so much I took her to the Emergency room and sat for three hours to be seen.  She was anemic.

We were referred to a plastic surgeon.  The choices of treatment were not promising.  There is no reason to treat most Strawberry hemangiomas.  They can grow without complications.  It's better to let them shrink on their own.  Addison has a cousin who had a strawberry hemangioma on her arm.  She did not have any complications and it is barely visible on the three year old.  Steroids can be used, but not without high risks of complications.  We were told that laser surgery was our best option and that we had to be referred to Duke.

It took almost a week to get the appointment at Duke.  When we finally got the call with the appointment we were heartbroken to find out it was two months away.  In the meantime, we are waking up with Addsion sleeping beside us in a pool of blood.  We were very upset.  How is this not a more urgent matter?  If she bleeds during her sleep who is to say that we don't wake up to late.

Our family doctor called a pediatric dermatologist to see if she could help us...

SHE COULD!

This series of pictures show the shrinking and healing of her birthmark.  So far this is over three weeks time...

We saw results within days.

It did bleed more.

The bandages were rough on her skin.

And the skin begins to heal

With the help, knowledge, and personal experience of this dermatologist we were put in the right direction.  Under the care of a pediatric cardiologist Addison was put on propranolol.

 http://en.wikipedia.org/wiki/Propranolol

Addison takes three doses of propranolol a day.  The pediatric cardiologist started her on a small dose and increased it for three weeks.  We are giving her 1.5ml each dosing.  Her birthmark is getting smaller everyday.  It has taken a long time for it to heal, but it is finally started to show signs of a scab.

As of the end of May the open wound has closed and the size is significantly decreased.