Welcome to Birthmarks and Hemangiomas InterNETwork Support Group Page 9

name: Jo Surerus
from: Portland, Oregon
mailto: joannems@penwool.com
location: On the chorid in the eye
I am an adult and the birthmark was discovered when I was about 30.

name: vanessa dyck
from: altona, manitoba canada
location: inside mouth
Jeffrey, my son has had his hemangioma since birth. We've been through surgery, and a variety of doctors with no help so far. Jeffrey is 7. I need to know if there is anyone who could help me find some help in Canada.

name: Jeff Campbell
from: Atlanta, Georgia
mailto: jcampbel@cdcfedcu.com
location: inside of his left leg from the top of his knee to the middle of his calf
Our child is now almost two weeks old. He was born with what has been diagnosed as a hemangioma on the inside of his left leg running from the top of his knee to the middle of his calf. It is raised about 1/2 -3/4 of an inch and is about the size of a golf ball. It was there at birth and does not appear to have grow since birth. It is not a bright red color. It appears to be more of a blueish grey color. I was wondering if anyone out there has gone through an experience simalar to this and what corse of action you decided to take. He also appears to have some swollen lymph nodes on the left side of his groin region. I was also wondering is this is normal. He was the second of a set of twins born in the 39th week of pregnancy. He weighed 7 pounds at birth. Thanks for your help.

name: Crystal Haydt
from: Woodstock,Ont
mailto: bambibabe8@hotmail.com
location: chin,rightarm, rightwrist, chest,leg, back,liver
My Adrianne is 4 months and she was born with one on her cheek I just thoght it was abirth mark bu it kept growing and more and more came when I took her to a pediatrician he told me to get tests done and they found them on her liver her liver is so large also it is causing heart failure and she had sevear aniemia and they gave her a blood transfusion. She is on heart meds and prednisone to try and shrink them and they got her failure under control but if at some point they couln't control it they would try embolization in Toronto then very last resort liver transplant we have been in hospital for over amonth now and I'm getting tired of it but she needs to be wathched carefully she also has a terrible cough that they say comes with the heart failure. I really want to find someone in a similar situation or that has been please help. Thanks

name: Melissa Moran
from: Round Lake Heights, Illinois
mailto: Tmoran2683@aol.com
location: Back and anus
my step-daughter is 6 1/2 years old and has2 hemangioamas...one on her back that is about the size of a flattened golf ball and a smaller oneon her anus which is oddly shaped and bright red. The one on her back was obvious at birth...about the size of a cherry and grew until she was 2 1/2, then got lighter, but the size is the same. The one on her anus appeared at about 4 months of age and remains unchanged. Heather is beginning to be very self-conscious aboout the one on her back...especially sonce people's usual reaction to seeing it it what HAPPENED to you BACK, Honey?!?!? while their eyes glare "what did you DO to her?" at me. We are under a lot of pressure from Heather and my mother-in-law to have it emoved, but we haven't found a doctor to help us.

name: Heidy & David Taylor
from: Indiana & New Jersey - living in Philippines
mailto: dhtaylor@skyinet.net
location: right cheek
Brittany's bithmark was only slightly noticable at birth - like a small rash. Over the next 3 months it grew bright red in color. At around 3 months it began to raise and now looks quite swollen, red and shiny. It is fortunately not effecting her vision or any other organ. Brittany is now 9 months old and she is a delight. WE are living in the Philippines and until I read Linda Shannon's book I thought we were doing the right thing by letting the hemangioma takes it's due course - it would go away on it's own. Now my husband and I are not sure. Living oversea are options are limited but we are more than willing to do whatever it takes including flying around the world and back to make beauty even more beautiful. Heidy & David Taylor

name: Lisa Vogel
from: West Union, Ohio
mailto: ashley240@webtv.net
location: right cheek, on and above jawline
Jacob's hemanginoma started as a small bruise, the doctors said it was nothing to worry about, well, within a week it started to raise, and I guess you know the rest of the story. During it's growth, the hemanginoma developed several ulcers tat would bleed and they required treatment. At this time, doctors say that it has probably stopped growing, but has not started to go away. My major concern right now is that Jacob is not speaking, and I believe it is due to the birthmark. I have seen several dermatologists, and nobody wants to remove it, I'm at the end of my rope!

name: Cheryl Vogel
from: Ripley Ohio
mailto: Sydsworld@webtv.net
location: left ear and below ear on the side of her neck
My daughter Sydney was born June 2, 1996 and like most of the other stories I have read the hemangioma did not appear until she was around a week old and and was just a small red spot, actually at the time we were thought it was a bug bite until we took her to the doctor for a check up thats when they told us it was a hemangioma. It grew very fast, and she suffered with sores and bleeding. We took her to many doctors and dermatologists who all suggested the same thing that we wait and let it go away on its own. So thats what we did and it has shown suggnificant improvement. She is now a 3 year old healthy, active and beautiful girl. But we want (like most others) to have it removed before she starts school. Because she now has been asking us to "take it off", and I am sure you know how difficult this is to expain to a 3 year old. We would now like to find a doctor for treatment. Something else that is very unusual is that she also has 3 first cousins all on the same side of the family whom have hemangiomas. The first was born with a very small one on his chest, his never evolved like Sydneys it is almost gone now. He is 7 weeks older than Sydney. The third (Sydney being the second) has a very large one on his chin. Now the fourth one just went in for a 2 week check up at the doctor and her parents were also told she has a hemangioma on her chin. This is my husbands side of the family, they are a very large family with 10 children and around 21 grandchildren. All of the children with hemangiomas have different parents and are the first! known in the family to have the se. I have never seen or heard they were hereditary. I was wondering if anyone might have any info. on this, if you do would you please email me and let me know. Thank you and God bless, Cheryl Vogel

name: Brandi Decker
from: Casper, Wyoming
mailto: swsmom6687@aol.com
location: face,head,neck,shoulders,left retina,brain, eardrum and arms
My son is one year old. he has sturge-weber syndrome. He has glaucoma to the left eye. he has seizures. He has had a functional hemespherectomy to the left side of his brain. He is my only son out of three children. He is developmentally delayed. I would explain him as beeing a four month old one year old. name: Melissa Cammarasana

from: Washington Crossing, PA
mailto: melissa_cammarasana@ml.com
location: left cheek; close to mouth
Appeared as small pink circle (very negligible looking) at birth. Weeks after birth, it became bigger and redder, and, at one point bled. Visited pediatrician who referred us the Dr. Honig at Children's who diagnosed it as a hemangioma. We were led to believe it would "involute" completely by the time she was 18 months old. At 12 months, there were not signs of progressed involution and were told we'd have to revisit at age two to talk about removal options. Juliet is 18 months old and we are waiting for another 6 months to return to Children's Hosp. in Phila.

name: Jennifer
from: Indiana
mailto: jenericmac@yahoo.com
location: Right Cheek
My 4 mo. old daughter has compound hemangioma on her right cheek. The strawberry is about the size of a quarter and the compound portion is about half the size of a ping pong ball underneath her little cheek. We are having pulse dye laser treatments and steroid injections at IU Medical Center in Indianapolis. We've also traveled to Arkansas Children's Hospital to see Dr. Waner. At this time, Dr. Waner does not recommend surgicaly removing it. If it grows or starts to distort her facial features, we will consider surgery. As first time parents, we are always wondering if we are doing the right thing for Mackenna. The laser treatments are painful as are the injections. She cries a lot which breaks our hearts. After just two treatments about a month apart, we haven't seen much improvement. In fact, the strawberry has grown slightly. The cavernous portion has remained the same. I guess that's a good thing since it hasn't gotten any bigger. I would love to hear from anybody out there...pleae share your story. Please e-mail me at jenericmac@yahoo.com. I could really use the support!

name: Julita Rivera
from: Puerto Rico
mailto: sanddollar19@hotmail.com
location: Face
I was born 1968 with a port wine stain . This blood birth mark covers almost all the left side of my face including part of my neck. the left ear is deep red and larger that my right ear. since i was 13 i loose my hearing from the left ear. The left cheek is deep red in some areas and is also quite enlarged. my upper lip is clear but the inferior lip is deep red and very enlarged. Inside my mouth i also have the hemangioma specifically in the left side my teeth gum and tongue are red . since mi birth my mom tried to do something about my condition but doctors told her in those days that no treatment so far was created for that type of marks. in 1983 i went to Schirners burn instite in boston and the doctors did a cirgury to reduce the size of my inferior lip, they also did a chin implant because they figured mine chin was to small. what i don't like is the scare that i have now. in 1992 a doctor in puerto rico stared a treatment with the tunable dye laser in my fa! ce. he treated it for two years and the stain became a little clear specially in the neck on where my hemangioma is not that deep. i'm not longer in the treatment because the goverment agency who was covering my treatment refused to continued it. i have a medical plan but it doesn't covered it. those first 2 years costed the agency 20,000 dollars. because my stain is so deep and large that 2 years treatment didn't clear up that much the stain. the bad thing is that i'm not a rich person and i'm not able to find the money for 6 or 7 years of treatment. when i think researchers find ways to help people with different medical conditions but then treatment's cost are too high for poor people i feel depress.so here am i wishing to complete my treatment but with no money to paid it. on the other hand i think that with my 31 years old i have learned to leave with this but this doesn't mean i prefer to have it. i don't have any computer friend and i will love to have one.

name: Sylvana Rizzi
from: Montreal, canada
mailto: sylvana.rizzi@sympatico.ca
location: on the right cheek, next to the eye
hello, my son 2 months old son. is born with a cafe au lait spot on is face as big as a quater.since is born i'm doing all kind of reserch to get it removed. in a fews weeks i'm starting lasers treatment, but i'm really anxious. I'm worried for my little boy...if anybody ad that kind of experience i would really appreciate if you could tell me somethings, My only though since is born as been is birthmark... Thanks

name: Samantha & Andy Street
from: Shropshire, England
mailto: supervi5or@aol.com
location: back,left side of face,neck,chest,scalp,behind ears,left eyelid,around windpipe and heart
Emma was born 2 weeks late on March 2snd 1999. The hemangioma became visible first on her back at 6 weeks, at 8weeks her neck, at 10 weeks her face. There was no discolouring, but we were out of our minds with worry. Our doctor kept reassuring us that it was just cosmetic, and couldn't do any harm.At 10 weeks,she started to breath loudly. The Dr said she had a cold, although she had no other symptoms. I asked if the hemangioma could be internal and pressing on her trachea, he said that it couldn't happen. Less than 2 weeks later Emma was recovering from having had a tracheostomy. Her trachea was so distended that the tracheostomy was nearly under her ear.She will have to have the trache until the hemangioma involutes. Emma is on a course of prednisone and tranexamic acid.She seems to be responding well, with few side effects.Everything seems to have stopped growing,at the moment, its one day at a time. Emma is now 6mths old, if she continues as she is we will be happy.But because of the internal risks,the next step is interferon,We don't want to,unless it is life threatening.We really need some more info about interferon, if anyone can help please contact us. We both feel angry that the severity of Emmas condition wasn't recognised earlier, but life is too short and too precious to dwell on the anger.Life is for living. Sam and Andy.

name: AMIE CUMMINS
from: DAYTON, OHIO
mailto: ACDCCUMMINS42@PRODIGY.NET
location: INSIDE MY NOSE, MOUTH, AND NECK
I CURRENTLY HAVE A TRACH. THE DOCTORS HAVE NO WAY OF HELPING ME RIGHT NOW. I AM 19 YEARS OLD. WITH A BLUE CAVERNOUSE HEMANGIOMA ON MY NECK. CAN ANYONE REFER ME TO DOCTORS WITH ANY NEW TREATMENT. CAN ANYONE TELL ME IF THEY'VE HAD OR KNOW SOMEONE WHO HAS A SIMILAR CASE THAT HAS HAD CHILDREN? PLEASE E-MAIL ME WITH ANY INFO. I'M DESPRATE!!

ame: Holly Dykstra
from: Dunnville, Ont. Canada
mailto: dykstraholly@hotmail.com
location: leftside cheek and behind ear
My daughter Chelsea is now 17 months old. When she was 2 weeks old three strawberry marks came up on her cheek and by her ear. When she was 3 weeks old her hemangioma came. That was when we noticed two more strawberry marks come up, one on her neck and underside of her chin. She was sent to a pediatric surgeon and because of the location of the hemangioma he was not going to operate on her unless it interfeered with her hearing or another on grew from one of the strawberry marks on her throat. His suggestion was to just leave it alone and observe it. Her hemangioma was located over the jugular vein and under her cheek muscle. He said it would be a 'bloody' mess and that her left side would be paralyzed (meaning no smiles) because of cutting through the cheek muscle. She went back every 3 months twice and then it stretched out to every six months, now we don't have to take her back for a year. Her hemangioma stopped growing before she was a year old, and now it looks l! ike it might be slowly shrinking . We have been told that after it is gone and there is loose skin she will probably have to have plastic surgeory. We are going to leave that decision up to her. If anyone has any imformation about this type of hemangioma (capillary) I would really like to hear from you. My Email address is dykstraholly@hatmail.com. Thank you.

name: Kevin and Sundae Isgett
from: Greenville S.C.
mailto: SISGETT@BJU.EDU
location: about an inch above her ear
We noticed it about two weeks after Eliza was born. It just kept growing and is now about an inch and a half across and about 1/2 inch high. Our doctor told us that it should stop growing when she is about 8 months old. Eliza is now 7 months old. Sometimes it seems to be getting a little bigger. We just want to find out more about it so we can be more prepared.

name: Lisa Vogel
from: Ohio
mailto: mlvogel@webtv.net
location: lower right cheek
My son is now 23 months old. Immediately ater his birth, we noticed a small bruise on his cheek, the pediatrician told us it was probably just caused during his birth (C-Section), and not to worry. After a few days, I noticed it had began to raise. My neice, who is now three, also has a hemanginoma on her left earlobe, so I knew what it was. We immediately took my son Jacob, to a dermatologist, and we were instructed to leave it alone and it would involute. During the growth phase, Jacob's hemanginoma developed several ulcers and would bleed constantly, still no treatment. Now, at almost 2 years of age, they say Jacob's hemaginoma has stopped growing, but involution has not started yet. However, now we are being told that because of the ulcerations and it's large size that surgery will be needed after it has involuted, at @ 5 or 6 years of age. There are several things that I just cannot understand: 1) Why wait? If surgery is inevitable, why put it off? The! re is not a day that goes by whe n people do not make comments, and little children are afraid to play with him, I am worried about his pyscho-social development, added to the fact that my son has not begun to speak yet, he will be 2 on Oct.1, and believe it is due to his hemanginoma. The speech therapist has said that Jacob would have problems forming his words because of his birthmark. 2) I have two other children, neither of which have a birthmark, I have my neice, which I mentioned above, who does, and I also have a nephew that had a small capillary birthmark on his chest. Now in all three of these birthmarks, an epidural was given, with my neice and my son, a C-Section was performed. I am just wondering if there is a connection there, my other two children were born natural with no drugs. If anyone has any comments, questions, or just want to talk with someone who is going through the same thing, please feel free to contact me. Thank you.

name: Julie Ries
from: Reston, Virginia
mailto: JDRIES@aol.com
location: 2 on neck, 1 on back of head, 1 on hand
Today is September 4, 1999. Like most of you, I am the stressed out parent of a child with vascular birth marks. My daughter, Evyn, is a 5 month old whose neck hamangiomas became evident around 3 weeks of age, the others followed. The lesions on her neck have grown & ulcerated causing her significant pain, asymmetry in the posture of her head and neck, and occasional bleeding. I have seen 2 vascular dermatologists and have been told that these lesions are too thick to respond to laser treatment; one of the dermatologists did a steroid injection into one of the lesions (no result), the other tried to put her on oral Prednisone (can't get it down her--she vomits it back up). I am seeing a pediatric ENT next week to screen for internal lesions. I can't abide by the "wait & see" approach (my pediatrician's suggestion) when I see how these are affecting her daily life & development. I am looking for a clinic or physician in the metropolitan Washington DC area who sp! ecializes in vascular birthmarks . I am certainly willing to travel to get progressive and competent care for Evyn. Any suggestions? Good luck to each of you.

ame: Lynne
from: Pittsburgh, PA
mailto: eklund@bellatlantic.com
location: airway - subglottic hemangioma
My son was born 4 weeks premature in May 1998. When he was seven weeks old, he started having trouble breathing. We took him to the emergency room where he was given a steroid and breathing treatments. Diagnosis: Croup. Week nine, we were back into the emergency room again with breathing problems. Another shot of steroids and more breathing treatments. We were told again that the diagnosis would be Croup. The doctors admitted that they felt it may be something more and suggested we seek the advice of Ear, Nose and Throat specialists. ENT felt that my son had a great cry and good color. They decided to check him for reflux and to scope the airway just to make sure everything was anatomically correct. We were reassured that it was probably something minor. During the scope, the doctors found that 70% of my son's airway was blocked with a subglottic hemanigioma. A tracheostomy was performed. He was ten weeks old. It was agreed that no treatment would be gi! ven to my son and that we would go with a "wait and see" approach. He was scoped in September and told that he was now 90% occluded. In December, the hemangioma started to shrink in size. I am extremely happy to report that in May of 1999, several days after my son's first birthday, he was decanulated. What a joy!!! I wanted to share my story with those who are experiencing similiar difficulties. I understand the heart ache and would love to give my support to those in need.

name: Julie Knight
from: Chapel Hill, NC
mailto: dknight6@bellsouth.net
location: cavernous located across chin, gum, inside gum, sinus, ear canal
Candela laser from age 3 weeks to 1 year. Sinus and ear surgery. Has left scaring and rippling of skin on lip and chin after fast ulceration.

name: Kerri Wipf
from: NH
mailto: jkwipf@aol.com
location: hand and arm
My daughter was born with what looked like a bruise on her hand and arm. over the months, it seemed to grow larger, so we took her to a specialist in Boston. At first they were not sure how to diagnose it. After a few visits, it is now diagnosed as a venous malformation. We are getting mixed signals on how to treat it. It is now raised, scaly and often bleeds. It has grown a lot since her birth and has changed rapidly. It appears it may be too deep for laser to treat it.

name: Lacy
from: Illinois
mailto: Lacy@dls.net
location: Forehead
My daughter's hemangioma appeared on her forehead at about 2 weeks of age. It grew for about the next month and is about the size of a nickel. It is a superficial strawberry hemangioma.

name: Kim Hearn
from: Dallas, TX
mailto: Khhearn@aol.com
location: superficial hemangioma on left eye/cheek/temple/hairline deep hemangioma in scalp
Hailey's birthmark showed up at about 1 1/2 weeks of age. We could always see a light pink color in that area, but didn't think about it until it became redder and raised. I was completely devastated when our ped said it would be there through most of her childhood. We found a pediatric dermatologist in our city and took her in immediately. Due to possible problems with her vision, we started pulsed dye laser treatments at 10 wks old. Now, at 7 mos old, she has had a total of 5 treatmnts. We can tell that the superficial part has stopped growing and is beginning to fade with treatments. The deep part in the scalp never became bulky and has not required any steroid treatment. Hopefully, if she ever grows hair, it will be covered! It is wonderful to find a support group for families learning to cope with this. I had not heard of this to this extent until our daughter developed it.

name: Kristen Sauerland
from: Titusville , Pa
mailto: mboyles@usachoice.com
location: top of head
My daughter Renata has a strawberry hemangioma on the top of her head, I am very frightened that it will continue to grow rapidly. she is now a month old and it seems to get bigger every day. i just pray that our insurance will cover treatment.

name: cindy smith
from: toronto, ontario, canada
mailto: cydsmi@aol.com
location: nose
My daughter is 3 months old. At birth she had a small beige mark on the side of her nose. My doctor told me it would go away in a month or two. It has only gotten bigger. Now it is a bright red protruding birthmark about the size of a nickel - now diagnosed by my specialist as a strawberry hemangioma. They say to leave it alone, that it will go away eventially... in the meantime it has bled uncontrollably, and developed two rather large and everchanging scabs. Right now she is 'scab free'! She is a beautiful, happy baby so it is very difficult when people chose to stare, avoid or make rude comments about her nose!

name: Maria
from: Melbourne, Australia/ Svendborg, Denmark
mailto: gafflarsen@smartchat.net.au
location: between bridge of nose and corner of left eye, right cheek and behind right knee
We noticed Hannah's (DOB 29/3/99)hemangioma when she was a few weeks old, it looked like a pale red area, but soon grew larger. By 6 weeks it was a raised spot, 3cm in diameter with a bright red 1.5cm centre. We have consulted a GP, a Peadeatrician, another GP, a dermatologist, a peadiatric opthamologist and finally a peadiatric dermatologist - they all recommend the same: conservative treatment, in other words, if the hemangioma does not seem to grow from now on, we'll wait a few years and assess the situation again then. I im very happy with their recommondations and would much rather wait and see, than commence medical or surgical treatment.

name: Patti
from: Mpls
mailto: Pattiwag@aol.com
location: right shoulder
Our son Will is only 15 days old. He has been seen by 7 different doctors in this short time. He was born with a 6cm diameter cavernous hemangioma on his right shoulder. We had never heard of this before and have been told many different things ranging from "its just a common birthmark" to "it could potentially be life threatening." We are feeling overwhelmed and very scared. We have not noticed any significant growth as of yet. Any support you can offer us would be greatly appreciated.

name: Warren and Nancy Deppong
from: Plymouth, Michigan
mailto: nwdepp@prodigy.net
location: large deep hemangioma on the nose, 4 superficial ones on the back, hip, hand, and on the larynx
Our son, Liam, is almost 4 months old. The main lesion is on his nasal tip, and has continued to grow since we first noticed it at 2 weeks. He has had three steroid injections into the lesion and lasar surgery on it once, about 3 weeks ago. Neither treatment method seems to have accomplished much, though its hard to say whether or not the steroids may have slowed the growth. We're quite frustrated with the response we're getting from the doctors we've seen. Our first doctor (in Chicago)was good, she did the first 2 injections, and followed up every two weeks. But then we moved to Michigan. The first MD we saw here(at University of Michigan - a dermatologist) said he'd do the injection if WE wanted him to, but he didn't think they would help. He had no other suggestions or recommendations. So then we went to a dermatologist who works through Childrens Hospital of Michigan. He suggested the laser surgery. We were a little leary since we had been told by the M! D in Chicago that Laser wouldn't help since his lesion was deep, but this doctor seemed positive about it so we went ahead. It was pretty traumatic, his entire nose turned black and blue. He has healed from the laser surgery, but it didn't help much, if at all. That doctor set up a follow up appointment for one month - which will be Oct, 1st. I think he's going to suggest laser again, but I'm not sure we'll agree to it. His office claimed that he's "one of the top three docs in the country for treating hemangiomas." But he only seems interested in doing laser surgery. We really want to find someone who knows more about this - is there someone in Michigan who you would suggest. Actually, we will go anywhere to have our son evaluated. Can someone suggest how we should proceed. Thank you so much for the work that you do.

name: Tracy Kiszelewski
from: Buffalo, New York
mailto: Kiszelewski@yahoo.com
location: all over my body over 80 percent of the body is covered
HI! My name is Tracy. I'm 19. I have the portwine stain all my life.I also have glaucoma. I'm blind in my right eye. I go for laser treatment but it hurts. People stare at me because i'm different. When i get cold i turn purple. I would love to hear from people. Thank you!

name: Craig Woodsmall
from: St. Louis, Missouri
mailto: LlewellynFawr
location: ear lobe
Actually, I don't have any children; I had the hemangioma myself. I am currently 30 years old, but I was born with a very large hemangioma on my left earlobe. My parents were told after my birth about hemangioma. The medical advice they were given (this was back in the 1970's) was just to wait it out and hope that it reduced enough in size and discoloration that it would not be noticeable. As a young child, I was teased frequently by some kids, but most just showed curiosity by contantly asking "what's wrong with your ear?" Unfortunately, I was not lucky to have a quick rate of reduction, and the hemangioma was still very noticeable at age 12. In 1981, at age 13, my parents and I decided to arrange for plastic surgery. At the time, it seemed like this was at the fore-front of new treatments for hemangioma. As with any surgical proceedures we were advised of the potential risks, etc... but my personal feeling is that it was the best decision we made. There was! a marked difference in my confi dence and self-image after the surgery. From the benefit of my experience I would only add that it helps to ask doctors lots of questions no matter how simple they may seem and if your not getting the answers you need, don't hesitate to get a second opinon.

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