Caroline had an appointment this week with Dr. Prose, so I decided to print off some comparison pictures to take with me to show him the difference. I had not really compared Caroline's most recent pictures to ones before propranolol, so I was shocked at how different the hemangioma
looked. Maybe there has been dramatic change after all! Although I was hoping to keep her on it just a little bit longer, it was decided to continue weaning her off the propranolol. We had decreased to two doses a day, now we are down to one. Dr. Prose really feels like Caroline is at the point now where her body will take over and the hemangioma will begin going away on it's own.
This week, I've really been thinking about the blessings to be thankful for in all of this. While certainly if given my choice, I would rather have never known what a "hemangioma" is at all, there are countless ways I truly believe the Lord has taken care of Caroline and her needs. I'm thankful to have a pediatricians office who listened to my concerns and referred us to a specialist in the early stages of the hemangioma. I'm thankful that we were led to Duke and the wonderful care that Dr. Prose has given Caroline. I'm thankful that Dr. Prose was willing to try a new treatment for her (propranolol) when the hemangioma began growing again and we were trying to avoid the awful side effects of restarting the steroid. Even the location of her hemangioma is a blessing! Most doctors advocate taking a "wait and see" approach with hemangiomas unless it is impacting a vital function or organ. Basically, this means that unless it is affecting seeing, eating, or breathing, NO treatment is given and the hemangioma is left to run it's course. This could take years! Left untreated, hemangiomas like Caroline's can grow very large, very quickly, causing ulceration (sores) that are extremely painful and difficult to manage. I have seen the pictures and read the stories from parents who are dealing with that firsthand and it's heartbreaking. Thank you, Lord, for protecting Caroline!
Here are the before and after pictures so you can see for yourself:
Day one of propranolol
This is day two 0r three
This is now, taken two weeks ago.
Pretty dramatic to me!
8 comments:
Holy cow!!! That is truly amazing! I guess we just weren't being patient enough, haha. She looks wonderful - as she always did. I'm so happy for you and your family.
WOW!!!! Looking good! Can't wait to see you this weekend and see Caroline's new "tricks"!!
Wow - that is a dramatic difference!! What great news. I am so happy for you and Caroline! I can completely identify with your comments. I feel the same way.
That really is a dramatic difference! So glad that you found a medicine that worked so well!
Hope you're doing well! We need to get Caroline and Mary Kenzie together!!
Wow! How wonderful, and what an adorable little girl! This was so random how I landed here. My daughter, Maggie (3 1/2 months), just began her propranolol treatment this morning. We are starting at .36ml and will increase to 1.0ml next Monday. Her heart rate has been great and I'm praying we can avoid the steroids. Her doctor said if we don't see any improvement by 3 weeks, we will add steroids to her treatment. How long was your daughter on the steroids? I'm going to read through your blog, but I just found it tonight and my jaw hit the floor after seeing those before and after pictures. What a blessing, you must be so relieved!
Please email me with any advice or if you want to just share what we have each learned with each other. How long was Caroline on the propranolol and how high of a dose did you reach?
jmrenee@hotmail.com
All the best to you and your sweet Caroline,
Julia
Just read over your blog. It looks like Maggie will be on the same dose that Caroline was, though only 2x a day at this point.
I would really love to hear how this experience has been for you.
I'd also like to send you a link to my blog, but I would rather not do it here.
Sincerely,
Julia (from Oregon)
Kate,
As I was searching hemangiomas + propranolol on the internet your blog popped up. My 3 month old daughter has a very large hemangioma that covers her left shoulder. We are seeing the same doctors that you are and after having 3 weeks of laser treatment to her ulcerations the doctor now wants to put us on the propranolol, but we're a little skeptical regarding side effects, so I was doing a little research. I'd love to chat with you if you have anything else you'd like to share regarding your daughter's progress. I can be reached at: bullsbay99 (at) yahoo (dot) com.
I'd love to hear from you!
Megan
I found your site a while ago and have been meaning to reach out to you. My daughter has a very large compound hemangioma on her left cheek, and has been on steroids and propranolol for 3 months. She is almost 6 months old and every time we try to stop the steroids, it keeps trying to grow. I am curious to know if your daughter is still on propranolol and if so, if you are still seeing improvement now that she is a year old. I am looking forward to Allie getting to the point where her hemangioma will stop trying to grow. If you have time, please reach out to me at haller00@ca.rr.com
I look forward to hearing from you,
April
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