Welcome to Birthmarks and Hemangiomas InterNETwork Support Group Page 6

name: Danna Cruzan
from: Fontana, California
mailto: dcruzan@crgmail.com
location: Front lip and right side of nose
My roommate, Belinda Ramirez' daughter Destiny who is 1 year 1/2 old, has a terrible hemangioma on her lip which affects her nose. Belinda is a single parent with no support from her estranged husband. The insurance of her work will not help her and she has been struggling to pay for the freezing method which has done nothing. She want to have the henagioma cut out but does not have the money. I said that she needs help and should contact a support group. Please guide us to help in our area. Thanks.

name: Stuart McKay
from: Melbourne Australia
mailto: hpeng@hookplastics.com.au
location: face
Aden was born with a dark purple discoloration to the right side of his which covered half of that side. We were told by some Doctors that it would probably fade away. He is 14 months old now and guess what, well you know what. We started the Candella Laser Treatment at the Royal Childrens Hospital in Melbourne 7 months ago, he has had 2 treatments in that time and we have seen some lightening of the mark (it is not raised) we feel that he will need at least 3 more treatments before it will really improve.

name: Lori B. Taylor
from: Indianapolis, Indiana
mailto: Taylor_Lori_B@Lilly.com or loriintern@aol.com
location: 1. right side of face by ear 2. right upper lip 3. left side of chest
My son, Brett, is now 9 months old. We noticed the first hemangioma when he was 2 weeks old. We noticed a small red dot near his right ear. At his 2 week check-up, the doctor told us that this was a hemangioma and the area would grow in diameter as well as out. Currently, it is as big around as a quarter and sticks out about 1/2 inch from his face. It appears to still be growing. We noticed the second hemangioma when Brett was about 2 months old. This one is located on his chest. It also started out as a small red dot. Currently, this hemangioma was mostly under the skin and looks kind of like a bruise. There is only a small area that is raised on the outside of the skin. Finally, the 3rd hemangioma is located on the right side of his upper lip. Until about 3 months ago, we thought this was a sucking blister caused from the pacifier. However, it to has been diagnosed as a hemangioma. This one is completely under the skin. Brett's lip just looks swollen. Two months ago, Brett underwent a scan to determine if any hemangiomas were located internally. (I had done quite a bit of research and learned that if a child has 2 or more externally, then there could possibly be some internally.) Fortunately, he does not have any internal hemangiomas. During this whole process, we have switched peditricians. My husband and I didn't feel that Brett's first doctor took our concerns regarding internal hemangiomas seriously and would not approve any testing to be done. She felt that we were overreacting and were only concerned with how they looked. This is not at all true. The doctor he is currently seeing is using the wait and see approach. We are not planning to have anything done to the 3 hemangiomas in the near future. I would like to hear from others with similar circumstances.

name: Kristin Woodman
from: Concord, NH
location: right cheek under eye, left cheek under eye, lips and above lips
It is actually my experience. I had the birthmark at birth. At that time the doctors didn't know a lot about it. I went through school with it. I was teased constantly. My birthmark wasn't a raised one but it one side of my face was bigger than the other for many years. It is actually still a little bigger on the left side but not as noticable. I attempted lazer surgery on many occasions. The first resulted in injury to the skin under my left eye. The next few times however resulted in the removal of most of the birthmark on my right side. The left side and upper lip area are still present. I am still self concious of it which makes being in public places a bit uncomfortable. One good thing has come out of my experience. I am a teacher and I find that due to my birthmark, I am better able to understand the sensitivity of children, not just because of their appearance, but other reasons too.

name: Goldie Dawson
from: Plymouth, Michigan
mailto: gkwilson@earthlink.net
location: Entire right side of ear and neck
I am writing on behalf of my sister and brother-in-law. About three months ago their son Alec was born with what appeared to be a port wine stain on his neck. Unfortunately, it has grown absolutely huge covering the right side of his neck and is growing into his ear. It is also blood red and very blistery and we believe painful. After comments from their pediatrician to not do anything about it, I went on the internet and printed some information for them I had found about hemagiomas they have since found a doctor that would do laser surgery on infants. His first procedure was Friday, October 9th, and when they came home from the hospital there wasn’t any difference in the appearance of the hemangioma however, I just spoke to my sister today and it now looks even worse and there is a smell coming from the area. The doctor is still saying that this is all normal, yet my sister is justifiably scared (he has about 14 more surgeries to go through) If anyone has gone through the laser surgery with similiar outcome I would appreciate if you would contact me so I can help my sister in calming her fears.

name: ANNA KRAISLER
from: BATTLE GROUND, WASHINGTON
mailto: KRAISLER@PACIFIER.COM
location: NOSE OF MY INFANT SON
I NOTICIED A BLUE MARK ON MY SON'S NOSE. I TOOK HIM TO THE DOCTOR AT 2 MONTHS FOR SHOTS. HE TOLD ME IT WAS A BIRTHMARK. IT'S GETTING BIGGER AND I'M SCARED BECAUSE I DON'T KNOW WHAT TO DO. I HOPE I CAN DO SOMETHING FOR HIM. I WILL SEE THE DOCTOR AT HIS 4 MONTH CHECK UP AND ASK ABOUT TREATMENTS THEN.

name: ANNA KRAISLER

mailto: KRAISLER@PACIFICER.COM
location: MY SON'S NOSE
I HAVE A 4 MONTH OLD SON WITH A HEMANGIOMA ON HIS NOSE. I NOTICED IT AROUND 4 WEEKS OF AGE. I TOOK HIM TO THE DOCTOR FOR VACCINES AND HE TOLD ME IT WAS A BIRTHMARK. IT IS GROWING AND TURNING BLUE-PURPLE AND RED. MY HUSBAND DOESN'T WANT TO DO ANYTHING BECAUSE HE SAYS IT'S NOT LIFE THREATNING. I'M AFRAID MY SON WILL GET TEASED VERY BADLY LATER. I AM GETTING ASKED ALOT NOW WHY "HIS NOSE IS PURPLE"? I EXPLAIN IT'S A BIRTHMARK AND SOME PEOPLE TELL ME THEY HAD ONE OR UNDERSTAND. THIS BABY IS THE MOST IMPORTANT PERSON IN MY LIFE AND I WOULD DO ANYTHING FOR HIM. HE'S SO SMART AND HAS SO MUCH PERSONALITY, EVEN AT 4 MONTHS, BUT I'M A NEW MOM, SO LET ME BRAG ALITTLE. I REALLY NEED TO KNOW WHAT I CAN DO FOR HIM. I KNOW THERE ARE DRUGS FOR THIS AND LASER TREATMENTS. I NEED TO KNOW SHOULD I SEE A DERMATOLOGIST OR PLASTIC SURGEON AND SHOULD I WAIT FOR A CERTAIN TIME OR SEE SOMEONE NOW. I LIVE IN THE PORTLAND, OREGON AREA.

name: Jill
from: Oklahoma
mailto: Itsjillyg@aol.com
location: left cheek
My daughter was born in July and is now 3 months old. She is a beautiful little girl. We noticed her hemangioma right away. It started as a faint red mark on her left cheek just under the eye. By the time she was ten days old, it had become much darker. Now, at three months, she has had an MRI and CT which revealed a mixed hemangioma. She has a cavernous hemangioma which goes back behind the globe of her eye and has caused swelling around the orbit of the eye. She also has a capillary hemangioma on the outside. It appears to be growing somewhat slowly, but she is being followed closely by a pediatric opthamologist to monitor eye involvement. All the physicians we have seen recommend we do nothing unless her vision in compromised. It is so difficult to take the "watch and see" approach. It breaks my heart that this had to happen to my little angel. We are coping much better now than at first, but it is still a daily struggle. I finally decided it was time ! to contact others who were shari ng this experience. Thanks

name: LeAnn
from: Illinois
mailto:
location: upper right side of chest
My daughter is 2 months old.We noticed that she had this purple lump on her.Doctors tell me not to worry,but how can you not worry.I am looking for any information on Strawberry Hemangiomas.

name: A. GREG ALTER
from: SANTA CLARITA, CA
mailto: ALTIM7@AOL.COM
location: UPPER LIP, LEFT LEG OPPOSITE OF ANKLE, RAISED QUARTER SIZE IN SMALL OF BACK,SMALL BELOW RIGHT BREAST
JUST STARTING TO BE A PROBLEM...ANY SUGGESTIONS FOR NEW TREATMENTS WOULD BE APPRECIATED

name: Victoria Gabhart
from: Huntingburg, IN
mailto: rgabhart@fullnet.com
location: right side of face down into chest
We saw that my daughter had an external hemangioma when she was about weeks old. When she was 7 months old we had a CT Scan done and found it extended into her chest and was wrapped around her trachea and esophagus as well as the carotid artery and several nerves. She was only breathing through a slit in her windpipe. We started her on steroids immedaitely and it shrunk considerably. As soon as we stopped the steroids it started growing again and is now almost as big as it was originally. We don't know what we're going to do now, probably another course of steroids or interferon. She's 11 months old so hopefully it won't grow too much more.

e: Goldie Dawson
from: Plymouth, MI
mailto: gziles@zdnetmail.com
I’m writing on behalf of my sister, whose 4 month old son, Alec has a huge hemangioma on the right side of his neck and growing into his ear. The growth had broken into a huge scab which was bleeding constantly and had a horrible smell to it. Alec is receiving his fourth laser treatment, and although at the last treatment the surgeon removed the scab, in less than two weeks it has started to to reappear and the smell is coming back. Even though the surgeon keeps saying this is normal... there doesn’t seem to be any improvement, in fact the hemangioma is growing larger. My sister is terribly worried and still wonders if they’re doing the right thing....Any suggestions???

name: Shari Olson
from: Spokane, Washington
mailto: shari96@juno.com
location: left side of neck, under left ear, extends onto scalp and back
We are in the early stages; Amy is 8 weeks old. Growth was very rapid, starting about 3 weeks of age. It seems to have slowed over the past 2 weeks somewhat. She is scheduled for an MRI in about 10 days.

name: Becca Squiers
from: Des Moines, IA
mailto: roushfan99@aol.com
location: by right ear, bottom lip, bottom gum, trachea, oropharynx
Andrea was born 5-25-97. She had redness on her bottom gum. No one was really sure what it was at the time. Several weeks later she developed one by her right ear and lip. We went to a dermatologist and he said to leave them alone because they we not a problem. When she was 2 mo old she started having breathing problems. Within 3 days she was diganosed with a subglottic hemangioma. She had a trach tube placed. She started Interferon and laser surgeries shortly after. Andrea is now 18mo old and doing fine with her current treatments.

name: Spencer
from: Western NY IN lawton OK for 6 mths
mailto: spencerdm@sonetnet.net
location: bridge of noise toward right eye
my husband and I are having a hard time trying to decide if our 12 week old bump should be removed. It is growing and the doc. left it up to us. please help

name: Courtney LeBlanc
from: Fort Polk, LA
mailto: court@wnonline.net
location: forehead
My daughter's name is Kelsey and she is nine months. We first noticed her birthmark when we brought her home. It was a tiny red dot. We just thought it would stay like that, But of coarse it didn't. It continued to grow for the next 6 months. We have talked to several doctors and they all have told us to leave it alone. So I guess that's what we're going to do. It has been really difficult for us when we go in public. She gets stared at and I get the ugly remarks."What happened to your baby's head!" I have learned to deal with it. She is so beautiful! I just remind myself of that everytime I get an ugly stare. If they can't see how beautiful she is that's just to bad. I love her and that's all that matters!

name: Toni Brocksmith
from: Jacksonville, Florida
mailto: ibr'sbac@aug.com
location: lower lid of right eye
Our daughter Lauren is 8 weeks old. We began to notice a small bruise on her lower lid when she was about 4 weeks old. The pediatrician thought maybe she had scratched the inside of her eye and had me apply antibiotics. After 2 weeks with no change, we were referred to a specialist who diagnosed her as having a hemangioma. At 8 weeks, it is now starting to grow that her lid is blocking her pupil and the doctors have recommended a steroid injection. We are very scared of the effects it might have, but we realize that if some thing isn't done soon, it could effect her vision. I am hoping that someone out there has a child with a similiar birthmark in the eye and they would be able to talk to me about what type of treatment they have sought and the outcome.

name: Sara L. Rodgers
from: Greeley, Colo
mailto: sarar@psd.k12.co.us
location: lymphangioma lower left jaw
This is a follow up to my son Elijah (page 1). He was diagnosed with a lymphangioma and had plastic surgery in April. We were most blessed that the lymphangioma was totally removed and he has a jaw line! It is funny though that he missed his big cheek for several months afterwards.

name: Susan Jennings
from: Ponca City, OK
mailto: srjenn@horizon.hit.net
location: right breast
My daughter was born with hemangioma on her right breast size 5x5inches. She bled most of her 1st 6mths of life and cried continuously. doctors told us to treat like burn wound covering with guaze and cortisone and frequently re-dressing wound. She is now 11 years old and scarring has disfigured and contracted the skin so much that we are concerned about breast development and normality of breast function. I do not think that reconstructive surgery can be performed at such a young age especially in this particular area due to puberty. If anyone has experienced a female breast hemangioma of this size, I would appreciate your help.

name: Melissa
from: Lawton, Oklahoma
mailto: immelissa@juno.com
location: right eyelid
My daughter's hemangioma did not appear until she was about 4 weeks old. We first thought she had bumped her head on something. When we took her to the doctor, they told us to see and opthamolgist. The opthamologist told us not to worry about it, it would go away by itself. It got to be the size of a large grape. It has finally started to get smaller, but the doctors are still telling us not to worry about it. They say they will refer us to the right people when the time is right.

name: Stacy & Mike Kiley
from: Cleveland, Ohio
mailto: Stacer107@AOL.com
location: Under the left eye
Our son's Strawberry Hemangioma showed up about a week after he was born. It quickly grew and we were referred to a pediatric dermatologist at the Cleveland Clinic. The dermatologist was very concerned about our son's eyesight because the birthmark was starting to block his vision, so she prescribed oral steroids and steroid injections directly into the lesion. Thankfully, as a result of the steroids, the birthmark stopped growing when he was 4 months old. As of today, he has had 4 laser surgeries and the hemangioma has faded and shrunk considerably (We have another surgery scheduled for February). Our son is now a happy, healthy and energetic 15 month old. Like all of the parents who wrote letters in this support group, we were completely terrifed when our son's birthmark developed (especially at such a rapid rate) and we were very upset by all of the staring and comments made by strangers. But this experience has made my husband and I stronger and more confi! dent people. Our strong faith i n God got us through this ordeal. We just want any parents who are just experiencing this to know that there is definitely hope-that these birthmarks do go away (much faster when they are treated). We look at our son now and there is such a wonderful improvement with his birthmark and it wasn't too long ago that it seemed so hard to believe that it would ever look better.

name: CarolAnn Burrows
from: Port Huron, MI
mailto: burrows@advnet.net
location: on cheek, under eye, extending down even with bottom of nose
Our daughter, Jessica, is 13 1/2 and she was born with a PWS on her cheek. We were advised to wait til around this time to start laser treatments. She has undergone 10 treatments. They have not been in the O.R. room, but under local numbing creams and with 10 mg. valium. She is probably 1/2 done but the progress is very slow now. It's hard to plan around school activities that a teen is involved in. She wears makeup called Derma Blend. Does anyone have any info regarding better numbing creams, or what lasers have worked for them. We have been using a short pulsed dye laser and are switching to a longer pulse for her next treatment. Looking for ideas and encouraging words! We need each other! CarolAnn-Port Huron, MI

name: Mary Mahieu
from: Port St Lucie, Florida
mailto: alex5150@earthlink.net
location: upper lip
My daughter Amanda who is now 11 months old has had a hemangioma on the upper part of her lip she was 2 months old. Her former pediatrician believed in the wait and see approach although she referred us to Miami Childrens Hospital. Amanda had her first laser surgery when she was 7 months old. There was not much improvement. Since then she has had cortisone injections and was on 25mg of prednisone for six weeks, while on the steroids the hemangioma began to shrink slightly and become lighter in appearance. The specialist in Miami can not do much more for Amanda except more laser surgery. My husband and I are not sure if we want to continue putting her throught that so we are at a stand still.

name: Patricia Albarracin
from: New Jersey
mailto: alba2061@rowan.edu
location: From her waist down to her toes.
Well, My sister is 26 years old, and has a combination of hemangiomas, lymphangiomas, and Klippel trenauny weber syndrome. For her whole life she has been in and out of the hospital. Alot of you seem to have children who are still very young. So I am not sure about what can be said about my sister since she is already 26. She has had all five of her toes on her right foot amputat- ed because of the hemangiomas, she is also no longer able to walk. The hemangiomas are growing in her organs causing her both to have to catheterize 4-6 times a day, and she has a colostomy bag on her side because the hemangiomas have destroyed her colon. She is very depressed, and knows noone to talk to who knows what she is going through. I am a college student, and have dealt with this all my life, but I don't know how to help her anymore. I want to help her.

name: Grace Gonzalez
from: Miami, Florida
mailto: grace_gonzalez@hotmail.com
location: Under my daughter's left eye
It first appeared when she was five weeks old. Ericka was born on Nov. 10, 1998. She is our first daughter. Yesterday we visited her pediatrician and he suggested to keep watching it closely. Since it is so close to her eye it might block her vision field. He said it was too soon to do anything. My brother-in-law, also a pediatrician, said not to worry, that it will go away on its own.

name: Stacey
from: Queens NY
mailto: perry123@aol.com
location: above left eye
Our daughter;s name is Jaclyn. She has a hemangioma above her left eye. It is the size of a large red grape. We are now going to plastic surgeons looking for the right treatment. People, friends, family even strangers ask"Are you going to get rid of it?" or" Just have it taken off".It's not so easy. We are finding it very diffucut to find just the right treatment. When we do find it how will we know it's the right one?

name: Mark Nolan
from: Edinburgh, Scotland
mailto: mark@wnolan.freeserve.co.uk
location: Top of head
Our 5 month old son has a large raised strawberry hemangioma on the top of his head. It is still increasing in size, as are the comments form others! We sought treatment but were told repeatedly that it would be gone by the time he is one year old. My research has shown that this will most probably not be the case. How do we convince the doctors to treat our son? Should we seek treatment? Should we wait?

name: CINDY WILLIAMS
from: CHATSWORTH,GEORGIA
mailto: sierra@dalton.net
location: about 2cm beside right earlobe
MY DAUGHTER SIERRA WAS DIAGNOSED WITH A HEMANGIOMA AT AGE 8 WEEKS. IT LOOKED LIKE IT WAS ABOUT THE SIZE OF A PEA AND LOCATED JUST BESIDE HER RIGHT EARLOBE.WE TOOK HER TO HER DOCTOR AND HE SENT US TO EMERY UNIVERSITY HOSPITAL IN ATLANTA TO CONSULT WITH A SPECIALIST IN EAR,NOSE AND THROAT DISORDERS. UPON OUR ARRIVAL WE WERE SHOWN THE INSIDE OF SIERRAS EAR CANAL AS HE CHECKED FOR ANY OBSTRUCTIONS AND SHOWN WHAT TO LOOK FOR IN THE FUTURE. HER DOCTOR TOOK A WAIT AND SEE ATTITUDE. HE DIDNT RECOMMEND ANY INTERVENTION. WELL I TOOK IT UPON MYSELF TO CHECK OUT ALL AVAILABLE OPTIONS WE LOOKED INTO LASER SURGERY AND WERE TOLD THAT THE DANGERS FAR OUTWEIGHED THE BENEFITS. IF THERE WERE COMPLICATIONS SIERRA MAY NOT EVER BE ABLE TO SMILE OR CHANGE EXPRESSIONS AGAIN. WE WAITED. WE WATCHED IT GROW AND AT ITS LARGEST POINT IT WAS 14CM AND GROWING. LUCKILY AT THIS POINT IT HADNT CAUSED ANY DANGER TO HER EYES OR EARS. WE ENDURED THE RUDE QUESTIONS AND COMMENTS AND STARES AND KEPT PRAYING THAT SHE WOULD GET BETTER. HER IMMUNE SYSTEM WAS WEAKENED AND SHE COULDNT ATTEND DAYCARE BECAUSE OF THE RISK INFECTION MAKING IT GROW. WELL AT AGE 18MONTHS IT BEGAN TO SHRINK. BY AGE 2 YOU COULD BARELY TELL IT HAD BEEN THERE. MY DAUGHTER IS NOW 4 AND HAS NEVER BEEN MORE BEAUTIFUL. WE WAITED AND OPTED FOR NON-TREATMENT AND HAD WONDERFUL RESULTS. THAT HAD TO BE THE HARDEST DECISION WE MADE. IT ALMOST KILLED ME TO SEE THIS GROW ON MY BABY AND NOT DO ANYTHING. PLEASE EDUCATE YOURSELF AND DONT SETTLE FOR A QUICK-FIX. THE RISKS INVOLVED ARE TOO GREAT. KEEP PRAYING.IT WILL GET BETTER. I WISH I HAD KNOWN ABOUT THIS SITE WHEN SIERRA WAS GOING THROUGH THE WORST OF THIS.GOOD LUCK!!!!!!!

name: sharon calvert
from: Nashville, Tennessee
mailto: sharon.calvert@columbia.net
location: right cheek
comment: My daughter was born 9/22/96, and 1 week later, her hemangioma "appeared". As it begin to occlude her eye, we went to Vanderbilt University to Dr. Ries. At age 6 weeks, she began treatment with the YAG laser (under the skin), with short recovery time. 8 surgeries and a year later, we tried the candella laser twice, and that took away the redness. Today, she has some extra puckering of the skin, which she should grow in to. She is very outgoing, adorable, and has lots of blond curly hair. She makes everyone around her fall instantly in love with her. We are so proud of our smart daughter. Like other parents, we experienced the comments, and my fear of taking her out in public when she was very small. My husband and coworkers were very supportive, and my therapy was taking pictures of her. Today, she looks at these pictures, and says she loves her birthmark! We were fortunate that we caught it in time, and were able to save her vision. I would love to talk t! o other parents, and help them t hrough this tough time. I cannot say enough wonderful things about Vanderbilt and Dr. Ries (and of course, insurance)! Thank you for this forum. PS: Your daughter is beautiful!

name: Steve Nettik
from: Bozeman, Montana
mailto: nettik@reveng.com
location: upper left cheek and eye
My daughter Alyx is 14 weeks old and we have been watching her hemanginoma grow since birth. Initially our doctor had us take the "wait and see" approach. Last week after examining Alyx, the doctor recommended that she be seen by a dermatologist. That was today. He immediatly wants to put her on prednisone and watch her over the next several months. As many of the other letters request, are there others who have any experience with this theropy? Thanks

name: Jamie Thomas
from: Olympia, WA
mailto: jtjedi@aol.com
location: Left lower leg, knee, calf, ankle
Hi! I have hemangioma, in my leg! I am a 31 year old female and have extensive, cavernous hemangioma throughout my left knee, calf and ankle. As all of us, I was born with it and have had surgery 3 times to remove portions of it. But it keeps growing back! It was suggested to me that the entire muscle be removed. But my parents opted to take out what they could but leave the leg intact. Thank GOD! I have always lived with great pain and have tried everything to control it. I find I need 6 Advil a day just to walk. I too get the "cramps" in the middle of the night and shooting pains during the day. I always limp and it has caused me psychological pain and embarrassment as well as physical pain. I didn't wear shorts until I was almost 25 years old. My lifestyle is quite limited in that I can do. I could never play P.E. as a child and contact sports were a disaster waiting to happen, in that if I got hit, I couldn't walk for a week! Even though I cant go for walks, or jog, ! or be really active on the groun d, I wouldn't let it interfere with my true passion, horses and riding. Even though it hurts, I found that riding was an activity I could do, without fear of getting "hit" and sitting on a horse is easier than walking. I would be glad to share my experiences and treatments. Let me know if you want to chat! Anyone had a successful laser surgury on the leg? Jamie Thomas jtjedi@aol.com

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