Strawberry Hemangioma

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Strawberry Hemangioma

Postby lauchlan » Wed Sep 08, 2004 05:48 am

My daughter has a strawberry hemangioma on the back of her head. It's about the size of a tennis ball and is ulcerating. We've been seeing a specialist and is being treated with steroids to prevent it from growing any further. However, it causes her a lot of pain and it bleeds a lot.

I guess I'm just looking to see if any other preemie parents out there have had to deal with this and for how long???

Thanks!

Proud co-sleeping, baby wearing mom to
Grace - 3/14/04
3 lb. 7 oz. 16 in.
Born at 33 weeks due to PE
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Re : Strawberry Hemangioma

Postby peanutsmom » Wed Sep 08, 2004 05:56 am

My DD has a hemangioma on her cheek, but is lucky that is is flat and never grew. She is two now. When she is closr to starting kindergarten, we will have it lasered. A friend of mine had a daughter with a huge one on the tip of her nose. They went through several surgeries and now you can't tell it was ever there. I recommend finding a specialist asap. My friend started a foundation and she might be able to help you find a good doc. It is called Share a Smile. I don't have the web address handy, but you could probably find it pretty easily if you did a search. The earlier you handle these things, the better the results. Good luck!

Dawn
Carolyn born at 36 weeks- PE with severe HELLP
#2 due 3/05
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Re : Strawberry Hemangioma

Postby bhargavidd » Wed Sep 08, 2004 11:43 am

my dd has a massive cavernous parotid hemangioma along her left jawline. she was on oral steroids for it, but they didn't work. we found a GREAT specialist in NYC and he performed an intralesional injection of a steroid concoction. it shrunk immmediately! she is going to receive her second injection by her doctor here on friday. check out: groups.msn.com/vascularbirthmark support

good luck!
bhargavi.

Mommy to Karuna Sindhu, born 1 pound 3 ounces at 25w6d.
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Re : Strawberry Hemangioma

Postby samarasmom » Wed Sep 08, 2004 05:21 pm

Isaiah had a hemangioma on his Butt :) It was removed at 2 wks old when they removed all the other tumors that he had in his body called Myofibromatosis.
It caused him some pain and that was why they operated. HAs your doc suggested surgery and is he aware that its painful and bleeding for your little one. I would let him know and push another form of treatment. Are you aware if they can do surgery. It can be scary but it is better than to have them suffer. Isaiah is 2 yrs old and had 11 tumors removed and the Hemangiona AND Pyloric Stenosis correction. WHEW.
If you have any questions or concerns or need someone to talk to please feel free to email day or noght. I have been there.

Sandra 23
Michael Abron ( fiance)
Elijah Kristopher Michael Abron ( 43 wks no complications) 5/6/99
Isaiah Liam Abron ( 37 wks PE and Preterm labor) 3/25/02
Samara Juliyana Abron ( 35 wks PIH and poss PE ) 7/21/04
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Re : Strawberry Hemangioma

Postby laura » Wed Sep 08, 2004 05:53 pm

My niece had (has) one that's about three inches diameter on her side-- they always said that hers not was removable, and at 19 she still has a little red patch, though not as big or raised as it was when she was a child. She was born at 32 weeks from PTL. Good luck with Grace's removal, though!

Laura
Administrator/AK Area Coordinator

Alicia (severe PE) 5/98 ~ Camille (htn, oligo) 4/03
http://www.babiesonline.com/babies/c/camilleandallie/
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Re : Strawberry Hemangioma

Postby aimeejane » Wed Sep 08, 2004 07:09 pm

My sister had a strawberry on her chin, and as an adult, it's completely faded. (My parents and I can see the remnants of it when we look hard, but no one else can.)

Nicky has a raised hemangioma on his left pinky. It was the size of his whole finger and bright red a few weeks after birth, but thankfully has caused him no problems. It has not grown as he has, and it's faded. It's basically the same size it was back then, but it's the same color as the rest of his finger. The doctor won't do anything about it unless it starts to cause him problems.

So, that's our story, but yours is COMPLETELY different. With the pain and bleeding, I would think it should be taken care of, according to everything I've read/heard. When I asked our pediatric surgeon (who did the hernia surgery) about Nicky's, he said that if it ever had to be removed, a pediatric hand surgeon would do it. What kind of specialist are you seeing for your daughter's? With the symptoms she's having, I'm surprised they're not doing more. If I were in your situation, I would probably ask for a consult with a pediatric surgeon.

Good luck!!!!

Aimee
Georgia State Coordinator
Moderator - Pregnant Again

Ds Nicky - 3/24/00 (28 wks - eclampsia)
Ds Kalen - 7/10/03 (36 weeks - preeclampsia)
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Re : Strawberry Hemangioma

Postby wcarder » Thu Sep 09, 2004 06:24 am

Did any of you catch the special on Discovery Health (my favorite channel....) last night about hemangioma's? I thought it was such a coincidence...I didn't know anything about them, but aparently there is a doctor in Little Rock Arkansas who is THE BEST. They talked about steroid treatment and surgery, etc. They may have more information on there web site or something if you missed it....

Wendy

DD~ Kenzie Celeste, 30 weeks GA, severe PE,

ps~ his name was Dr. Waner.
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Re : Strawberry Hemangioma

Postby lauchlan » Tue Sep 28, 2004 07:50 am

Sorry, It's been a while since I've been around. We've changed Grace's bandage to one made for people with serious burns & found a tape that she's not allergic to. It's doing MUCH MUCH better. Now that it's back to not bleeding, it seems to be causing a lot less pain and I'm able to take a good look at it. It has definitely flattened and is starting to turn gray. Those are both good things. Thank goodness!!!

Her doctor is a pediatric dermotologist who specializes in Hemangioma's. His name is Tor Shwayder and he's fabulous. He thinks a lot of doctors remove them prematurely and that can cause more problems than the Hemangioma itself.

However, I'm ready to be DONE WITH THIS!!! Our next appointment with him is on Oct. 7 and I'm going to have him explain to me again why we aren't taking it off.

I'll let you know what he says. Thanks as always for your support ladies!!!

Proud co-sleeping, baby wearing mom to
Grace - 3/14/04
3 lb. 7 oz. 16 in.
Born at 33 weeks due to PE
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Re : Strawberry Hemangioma

Postby catherine » Tue Sep 28, 2004 08:10 am

Hey Wendy, yes I've seen the Discovery program, one of the best things about being in Little Rock is the quality of the doctors that practice at the Arkansas Children's Hospital. I know that they offer a lot of different treatments for hemangioma in the clinic, not just surgical. All my kids go to the faculty pediatricians and needless to say they've always been scrupulous in monitoring birthmarks. Chloe has a strawberry hemangioma on her butt which has yet to fade. She had two little raised hemangiomas when she was born, one on the tip of her tongue which looked very strange.... but they have faded now. I believe that time does help improve things. I know that the tissue involved is believed to be derived from the placenta, hence that awesome capacity for growing blood vessels. Weird fact of the week.

Catherine
Mom to Finn, Lucy (preeclampsia and HELLP) and Chloe.
Moderator HELLP Syndrome Survivors
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Re : Strawberry Hemangioma

Postby samarasmom » Tue Sep 28, 2004 09:10 am

There are other options such as steriods that i recall you saying she was on to reduce. Hemangiomas actually are avoided being removed unless they are causing some type of obstruction or problem.Will be looking for an update on the seventh for what the plan is for this. I can understand the frustration of it all and wanting it all to just go away. I am here for you on this. Email me or vent on here what you feel. Keeping you and Grace in my prayers

Sandra 23
Michael Abron ( fiance)
Elijah Kristopher Michael Abron ( 43 wks no complications) 5/6/99
Isaiah Liam Abron ( 37 wks PE and Preterm labor) 3/25/02
Samara Juliyana Abron ( 35 wks PIH and poss PE ) 7/21/04
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