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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   Advice neeede quickly (http://birthmark.org/board/showthread.php?t=5369)

HLA76 06-21-2011 06:19 PM

Advice neeede quickly
 
I posted on here about a month ago about my son with an H on his upper lip. We saw a ped derm at Children's Memorial in Chicago, and she is WONDERFUL. She decided to do the steroid injections directly in to the H, she didn't want to start him on a daily regemin if she didn't need to. She did the injection and told us to come back in a month. Well, here I am a month later and the H has grown. It hasn't grown alot, but it has definately grown. I didn't expect miracles, but I thought it would at least stop growing. Also, i feel horrible watching my son get injections in his lip.

Anybody who has been through this treatment please give me a realistic expectation??? Is this normal??? Should we continue this treatment or ask for a new one???

Thank you!!!! :p

KatieG 06-21-2011 06:22 PM

I am not an expert, but our Dr. told us that steroid injections would not work since the H will continue to grow over the first year or a little longer. He said that our options would be daily drug therapy or removal. My daughter's H was not on her lip though.

HLA76 06-21-2011 06:23 PM

She told me that she was worried about where it was on the lip because typically the skin on the lip doesn't bounce back as easily after stretching, which makes me even more concerned.

KatieG 06-21-2011 07:39 PM

Well maybe ask more about the daily medicine option. I agree that you want to keep growth to a minimum in that area.

smurph 06-22-2011 02:35 AM

Hi there! My daughter has an upper lip hemangioma. I'm not sure what the most common treatments are for lips, but I can tell you what happened with us. She had a quickly growing lip hemangioma that ulcerated when she was about 2 months old. She was put on oral steroids at that time (this was 6 years ago, they didn't really offer propanolol to us as an option then) She remained on the steroids until she was about 10 months old (started at a high dose and slowly tapered over a long period of time.) Our doctor mentioned that lips can be kind of tricky in terms of involution and having them look right in the end. So I'm glad we chose to do the medicine...I think it really stopped the growth and perhaps prevented major surgery for her down the road. She is now 6 years old and did have surgery last year to remove scar tissue from her previous ulceration and to just kinda reshape her lip a bit..it was relatively easy and the outcome was super! So I think it wouldn't hurt to look into the steroid or propanolol option...or at least consider it. Our daughter didn't really have any major side effects so it ended up being worth it for us. Here's some pictures if you would like to see:


http://www.facebook.com/media/set/?s...l=a18fd285 c7

Let me know if you have any questions! I feel like I was in your shoes just yesterday. I know it can be stressful trying to figure things out. Hang in there! :)

Shannon

HLA76 06-23-2011 01:37 AM

Shannon,
Thank you soooo much for sharing your pics. Your daughter is gorgeous!!! Her H is in the same place as my son's, but my son's is not as large as your daughter's. His seems to be growing inside his mouth. I am now noticing I can see an outline of it on the outside of his lip, more than I did before. We go back to the ped derm tomorrow so I guess we will see what she has to say.

nickbar 06-23-2011 08:42 PM

I am glad you are seeing the doc again to ck on the growth. I would also encourage you to take advantage of the great VBF ask the expert page to get other treatment options. It may be helpful to know what plan b, c might be. Let us know how the appt. goes

HLA76 06-24-2011 01:09 AM

Well, we went back to the doctor today and the doctor agreed that it had definitely grown. His H is spreading into his mouth, but you can see the outline of it on the outside of his lip. She asked if it went down at all after the last injection or if it stayed the same and continued to grow....we told her it just continued to grow. She decided to try another injection, this time with more, and see if that effects it at all. She said that if it doesn't work, that she may consider other options. We go back in a month, yet again.

For those of you who have gone through the injections, how soon do you see results. She explained that his lip may go down and then it may come back, but didn't say how long it will take to go down or how soon it may come back. There is part of me that hopes I will get him up tomorrow morning and his lip will be better, but I also know I have to be realistic.

Thank you!!!!

Jenni 06-24-2011 02:49 AM

Hi- My daughter is 3 months old and has a lower lip hemangioma that runs all the way down to her gum line. The H started to enlarge around 2 weeks of age. Our doctor started her on Timolol (topical medication) at that time. Our doctor told us that it works very well on lip and eye lid hemangiomas because the skin is thinner in these areas. We have had a lot of success so far. It has stunted the growth and lightened the color dramatically. I saw results after the first night we used the medication. My doctor initially talked about steriod injections also, but the medicine has been working so well, we haven't had to start them. You may want to ask your doctor about Timolol. Best of luck!

Jenni


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