Vascular Birthmarks Foundation Forum

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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   10 H's and counting (http://birthmark.org/board/showthread.php?t=2833)

ambgrc 03-28-2008 04:05 AM

10 H's and counting
 
My son was born 2.5 months early at a weight of 3 lbs. At about one month I noticed his first H in his pelvic region. It has grown quite large. It is very red, raised and shiny and is roughly 1.5 inches long and .5 inches wide. He is now 2.5 months old and it seems almost daily that I notice another H. He has 10. He's got one above his earlobe that is very reddish/purple that just popped up a week ago and another on his calf that is getting bigger. The other 7 are small, raised but small, and red. At what point do they stop coming up? The doctors and nurses I deal with downplay them and say they'll go away, but it makes me sad that they keep coming up. The one on his ear could affect his hearing if it doesn't stop growing. We see his pedi next week and I'm getting the name of a Hematologist at Texas Children's to make sure he doesn't have and internal H's. Any advice?

EJsMommy 03-28-2008 04:12 AM

IMO, Docs are too passive
 
In my opinion, they need to take your baby's multiple H's very seriously. I had to be agressive with seeking my daughter's treatment because her pediatricians/opthamologists/dermatologists said the same thing. yet, it kept growing and is now making her eye droop. Good thing she has a surgery scheduled for May!

I wish you the best of luck. The MRI is going to be very important to look for internal H's. I request an MRI for my daughter to check out her eye region, but the doctors told me I was overreacting. Either way, seek all the opinions you need. A Hemangioma Specialist is going to be the best bet though, because they know more than any other doctor about these birthmarks.

Best of luck. We'd love to see photos...;)

Rachel06 03-28-2008 12:23 PM

multiple hemangiomas
 
Hi, and first off, good for you for coming here to find help. You will hear from a lot of moms who know exactly what you are talking about. You need to consider seeking the advice of someone who specializes in vascular anomolies/hemangiomas. There is a condition called hemangiotosis - where it is actually in the blood - and several other issues that could be serious if left untreated. This does not have to be the case, but definately worth ruling out. If you want to chat or if you want me to try and help you, feel free to e-mail me privately at sherrirfoster@sbcglobal.net.

Best of luck with your search for answers and treatment. I hope to hear from you.

Sherri Foster
sherrirfoster@sbcglobal.net

ambgrc 03-30-2008 01:17 AM

I will post back when I discuss the referral with our pedi. I received the report from his Early Steps visit (for preemies at risk of developmental delays) and his neonatalogist said all was normal for him except the multiple H's so it's documented. I'm so glad I found this forum because all the parents are like me. No one close to me has ever had to deal with H's so this is a blessing for me.

quinnysmom 03-30-2008 07:17 PM

Dr Metry at the Texas Children's Hospital is a pediatric dermatologist and a major researcher in the field of vascular anomalies. She has a vascular anomalies clinic which coinsists of a multi-disciplinary team who will completely evaluate your child. YOu need to get to a Vascular Anomalies team because as Rachel stated your child is at risk of other internal hemangiomas and related conditions. A referral to the Vascular Clinic would be your best option. Heamatology is part of the team but she will need to be assessed by the team.

Hope this helps, please keep us updated.

Jen


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