Just wanted to come back and update agai

iVillage Member
Registered: 11-30-2009
Just wanted to come back and update agai
4
Mon, 09-20-2010 - 12:18am

I know how frustrating it can be when you are looking for help and answers and people do not update, etc. I've been there, so I'm updating again. Some of you may remember me from my previous canverous hemangioma post or the propanolol posts.



My daughter did the 72 hour treatment in Childrens to see if she could tolerate the propanolol and she could. (this was in February)



We saw an improvement right away and then it just stayed that way for a few months and then we saw a dramatic improvement.



When we went wo wean her off, (twice now) the hemangioma got larger. We think it's due to the dosage given because the amount has not been changed since she first started this in February at 6 months old. She is now a year old. Anyway her dermatologist doesn't want to increase the "dosage" unless we have to because then whe will have to do another

Avatar for purple31
iVillage Member
Registered: 03-06-1998
Mon, 09-20-2010 - 8:12am

Hi!!! :o)



Thanks for the update. I love hearing how everyone's doing.





I do know how frustrating/disappointing it is when your child doesn't fit into the usual mold. BTDT.





Most of the people I've come across whose children have had H's... they do stop growing by 12 months of age. Sometimes, unfortunately, they don't. I'm hoping your dd has finally hit the end of her proliferation phase and you'll soon see more improvement.





Your advice about getting a 2nd opinion is so true. And if someone doesn't get the answers they need by that 2nd opinion, go for a 3rd. As parents we need to be given all the information we need to make the right medical decisions for our children... whether that be wait-and-see, steroids, propanolol, laser or other surgery. The old saying "the more you know..." comes into play here.



Thanks for the update!!! I would love to see your blog (I'm sure I've seen it but I have a new computer and didn't move all the bookmarks/history to this one) but your profile isn't set up to accept messages. If you read this, please send a link to my email listed below. Thanks.








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Melissa's Hemangioma Page






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iVillage Member
Registered: 11-30-2009
Mon, 09-20-2010 - 8:21am
I will have to set my profile up to allow messages, not sure how to do that but when I have more time I am sure I'll figure it out. lol Sorry.
Avatar for purple31
iVillage Member
Registered: 03-06-1998
Mon, 09-20-2010 - 8:31am



To enable messages, click on the "board settings" link (in the light brown bar above) and when the window pops up, scroll to the bottom and checkmark the box for member to member email. Thanks.








Photobucket








Melissa's Hemangioma Page






e-mail tag














Help support NOVA and the VBF...
NOVA logo and
Click their logo(s) to find out how.












"Nobody can make you feel inferior without your permission."

~ Eleanor Roosevelt ~












iVillage Member
Registered: 09-30-2003
Tue, 09-21-2010 - 9:04am
Where is your daughter's hemangioma located? How big is it. If it covers a large area on the face near the eye or beard area has she ever been screened for PHACE? Some PHACE kids have hemangiomas that don't want to quit growing, or at least do not follow the norm.

Barbara - Mom to Veronica aka Roni- Large facial Hemangioma and PHACE



Just Remember that God does not give us more than we can handle, but why does he think I am so strong?

Barbara - Mom to Veronica aka Roni- Large facial Hemangioma and PHACE


Just Remember that God does not give us more than we can handle,