5 week old has Hemangioma in Liver HELP!! - Vascular Birthmarks Foundation Forum
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  #1  
Old 09-11-2003, 11:11 PM
pk8183
 
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Default 5 week old has Hemangioma in Liver HELP!!

My wife and I just returned from the Childrens hospital afer a 10 hour day of ultrasounds, dermatologists visits, Cardiologists, etc on our 5 week old son.

He ahs about 30 Hemangiomas on his body (including one on his eyelid) They informed us that he has 7 small Hemangioma's on his liver.

Does anyone have any experience on this...we are scared to death!

Thanks in Advance
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  #2  
Old 09-12-2003, 02:57 AM
nickbar nickbar is offline
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Location: Pacific Northwest
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Default Re:5 week old has Hemangioma in Liver HELP!!

My heart is breaking for you. I remember so well the fear three months ago (when our son was your son's age). We do not have experience with internal H. But, our son has a large h. on his face and neck and behind and in the ear,

This is a great website and hopefully someone will have more infor. for you. The good news is that you know early on what your baby has...and the right tests and doctors to help you go forward with the best treatment. People here are really good resources for Doctors too.

Also, you might want to ck out the website link below. it is a great support group. There are parents on both sites with experiences like yours and positive outcomes to give you hope. Babies are amazing...they often handle things better than adults.



http://groups.msn.com/vascularbirthm..._whatsnew.msnw

My son's picture (Nicholas) is posted on the site above also...he has come a long ways.

Corinne
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  #3  
Old 09-12-2003, 02:24 PM
mesa
 
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Default Re:5 week old has Hemangioma in Liver HELP!!

I have just read your post on your son. I wanted to let you know that I know exactly what you are going through. My son is now 2 years old and he has 20 external hemangiomas and several internal. The only internal organ that he has them on is his liver. My heart aches for your family. This is really hard to go through and I understand your worry and concern.
My husband and I took our son to see Dr. Milton Waner at Arkansas Childrens Hospital in June. He relieved so many of our fears. He stated that Nicolas will be fine and to treat him like a normal healthy boy. There are signs that you need to watch for: blood in the stool and urine, difficulty breathing, coughing blood - all these are signs that an internal hemangioma has ruptured. I really don't want to scare you, I look for these signs everyday, but I do want you know what to look for. What did they say about the liver hemangiomas? Are they posing problems with the function of the liver?
Also, are his external hemangiomas compound, superficial or deep? Dr. Waner explained to us that hemangiomas that resemble a mushroom (round top above the skin and a "stem" beneath the skin) don't go away by themselves. The other types do eventually. We are having surgery on Nicolas next year due to he has two of these "mushroom type" hemangiomas.

I would refer you talking to Shannon Smith. She helped us out a great deal with Nicolas and she is a God-send.

Remember that God does not give us more than we can handle - I think some days that he has more faith in me than I have in myself! I will keep you in my prayers.

Please feel free to e-mail me anytime,
Melissa



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  #4  
Old 09-12-2003, 04:44 PM
pk8183
 
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Default Re:5 week old has Hemangioma in Liver HELP!!

Thank you for the words of hope and inspiration. It is comforting to know that there are others out there that have the same worries and concerns.

Jacob has about 30 H's on his body...I am unsure of what the different types are. Most are very small (about the size a pen tip) with 1/2 dozen or so being a few Cm wide.

We met with Dr. Amy Nobber at Childrens Mercy Hospital in KC yesterday. She seems to be very knowledgable and understanding. I think I asked her 20 questions and she was very patient and answered everyone of them.

Dr. Nobber wants to see him again in a week, and we are going to a cardiologist next Friday to do an EKG and make sure that his little heart is working well.

Right now they are going to hold off on the Steroids a little bit to see if the H's are growing or are reducing on their own. I agree we need to be patient, but I am still worried about letting it go to long.

I really appreciate the watch list....Jacob was Jaundice after birth and was under the bilie lights for two days to reduce it.

My wife and I tried for over two years to concieve Jacob, and he is a miracle everyday. I am hopeful that everything will workout. He is a strong boy and has gained two & a half pounds in the past 5 weeks. This is very encoraging.

Thanks again!
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  #5  
Old 09-12-2003, 10:14 PM
nickbar nickbar is offline
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Default Re:5 week old has Hemangioma in Liver HELP!!

I just saw his pictures. SOOOOOOOOO CUTE>

Kisses to your sweet amazing baby :-*

Corinne and Nicholas
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  #6  
Old 09-17-2003, 05:10 PM
jennazmommy
 
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Default Re:5 week old has Hemangioma in Liver HELP!!

I could get you in touch with someone who may be able to help you. Could you email me at smas73@msn.com?

Shannon

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  #7  
Old 09-23-2003, 01:48 AM
pk8183
 
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Default Re:5 week old has Hemangioma in Liver HELP!!

I just added some details on Jacob @

http://www.jacobkilgore.com/Hemangioma.html
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  #8  
Old 09-23-2003, 04:15 AM
nickbar nickbar is offline
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Default Re:5 week old has Hemangioma in Liver HELP!!

He is so cute!

We will continue to pray for him and you. I am glad you found doctors that will keep a close watch on him.

Please keep us updated.

Corinne
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  #9  
Old 07-16-2008, 12:41 AM
summersmom summersmom is offline
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My daughter is 3 months old, and she has probaly about 50 H's external and then we did the ultrasound on her liver and they said she had to many to count on the liver. and right now they are marble size. We have been sent to gastrologist, cardiologist, dermatologist, and we are waiting to see a hematologist and a ent doc. i am in the same boat as you. I will pray for you and your family. I just wish they would tell us what to do, it is a scary thing.
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  #10  
Old 07-16-2008, 08:31 PM
lo1 lo1 is offline
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I just wanted to reply to your post summersmom - my daughter has one large segmental H on her eyelid, head (external) and behind her eye (internal). One H is stressful enough to deal with so I'm thinking of your family. Good luck and we are here for you!

Lo x
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