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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   New Here (http://birthmark.org/board/showthread.php?t=5416)

SweetBanany 07-30-2011 05:16 PM

New Here
 
Hello! I have a 5-month old daughter with two hemangiomas. She is 16 lbs, and is on propranolol 1.5 ml, three times a day. When she first started the propranolol, we noticed slight improvement, but now they remain unchanged. I have come to this site in the interest of seeing other people's stories, and the course ofaction taken. I have confidence in my daughter's pediatrician, but believe in doing research on your own as well.
Her hemangiomas are relatively small, one the size of a kidney bean, and the other the size of a half dollar. I guess I just constantly struggle with the worry that there may be a bigger underlying issue. I have noticed recently that the leg with the hemangioma is larger than the one without. I plan on scheduling her 6 month well visit within the next few weeks and mentioning it then.

nickbar 07-30-2011 07:07 PM

Are both hemangiomas on the leg? How much difference in size do you see. Are you able to take photos and notice a difference? Are you seeing a specialist?

SweetBanany 08-01-2011 03:15 PM

Hello! Thank you for your quick reply. The larger hemangioma is on her leg, and the smaller one is on her neck. My husband and I both just noticed one leg being larger within the last couple weeks. If both legs are in the same position, you can see it in a photo. She is being treated for the hemangiomas by an ENT, but has not seen any kind of vascular specialist. It is my understanding that only three or more hemangiomas warrant a specialist?

KatieG 08-01-2011 05:41 PM

I agree she needs to see a specialist. Especially if you are noticing a leg size difference. I have never heard of an ENT treating them. Good luck and I would definitely see what they say at her checkup :)

smurph 08-08-2011 12:14 PM

I agree that a vascular anomalies specialist is the way to go. I don't think it matters how many hemangiomas a child has...it just matters what is going on with them and what kind of treatments are suggested. I have heard before that if a child has multiple hemangiomas they may be at risk for internal ones...maybe that's the 3 or more guideline thing you were speaking of?? But I think seeing a vascular specialist is completely normal for having only 1 or 2 hemangiomas.

3 of my children have hemangiomas. They each only have 1 hemangioma. One required a specialist and had oral steroid treatment, surgery and laser. One saw a specialist but didn't have treatment and the other just has a teeny-tiny one on her arm.

I would definitely see a specialist where you have concerns about the size of her leg. Maybe it is not really a hemangioma? They are difficult to diagnose sometimes. I'm not sure where you live, but you could on the list here for doctor's names.

Good luck! Keep us posted!
shannon

nickbar 08-08-2011 09:12 PM

It is not the number of lesions I am concerned with it is the location, growth and size difference in the legs. 3 or more lesions is a typical indication that an mri should be done to rule out internal lesions. The reason we mention seeing a specialist in treating hemangiomas is to make sure you have accurate diagnosis and treatment options given to you. Would you be willing to share a photo of the legs? You can email it me if you prefer.

momof3inpa2009 08-31-2011 01:33 AM

For us we noticed a change right away and then nothing...I was getting so irritated and didn't know why it wasn't working. But slowly it did work. And it looks so much better to the point people have forgotten about it. She is now off of propanolol but is on timolol because her hemangioma is being stubborn. She has a deep one, under the skin by the way. Good luck and all I can tell you is be patient. If you would like to talk further I'd be glad to talk with you.

SweetBanany 09-16-2011 03:44 AM

Hello! I apologize for taking so long to reply. Well, I took her to her pediatrician. She agrees the leg with the hemangioma looked bigger, but when they were measured, they came out the same. The leg with the H has a little extra fat roll that apparently makes it look bigger. Also, the only part of the leg that looks bigger is the thigh. She pointed out that if it were an issue related to the H, that everything distal would be enlarged as well, but it's not.
She said I could bring her back in a month to have it remeasured. Although I see no change, I will Probably do so anyway just to be on the safe side. Thank you again for your reply :-)

SweetBanany 09-16-2011 04:01 AM

Quote:

Originally Posted by momof3inpa2009 (Post 24057)
For us we noticed a change right away and then nothing...I was getting so irritated and didn't know why it wasn't working. But slowly it did work. And it looks so much better to the point people have forgotten about it. She is now off of propanolol but is on timolol because her hemangioma is being stubborn. She has a deep one, under the skin by the way. Good luck and all I can tell you is be patient. If you would like to talk further I'd be glad to talk with you.

Wow! That's great! How long did it take before it became less noticeable? I am noticing steady but very slow improvement. Really, I am just happy they are not getting worse.

spaatz1329 09-16-2011 11:55 AM

We also noticed a change right away, then nothing. Then it started to regrow-turns out her dose needed to be adjusted for weight gain. It's a slow process I think! Hang in there!


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