Welcome to Birthmarks and Hemangiomas InterNETwork Support Group Page 11

name: Stephanie Grantham
from: Pensacola, Florida
mailto: Stephanie9999@webtv.net
location: neck
My son, who is 8 months old, has a deep hemangioma on his neck. It first appeared when he was about two weeks old. It has been growing fairly rapidly and we, along with a pediatric surgeon, are keeping a close eye on it. There is a chance it may block his windpipe. We discussed surgery, but neck muscles would have to be cut to remove the hemangioma. So, for right now, it is watch and wait, and pray....

name: Amy & Addison
from: Texas
mailto: aimlessf@aol.com
location: left jaw, left bicep and small of back
UPDATE! The last time I wrote was when Addison was about 4 months old. Well, she will be 3yrs this April. Her hemangiomas never got any bigger than what I mentioned previously (the size of kidney beans). The one on the small of her back is 1/2 gray, like a donut, the center is grayed out and involuting wonderfully. The one on her jaw is still pretty red but a darker shade and has the graying occuring as well. Her cavernous one is just about flat with a small red dot on top. 8-)

name: Carlene
from: Utah
mailto: CarAnn30@aol.com
location: Top of head
My daughter is 5 months old and I am just looking for information on what to do. Her Dr. says don't worry just wait and see. It is growing and now there is another one starting next to it. I am worried. So I am just looking for help to know what to do.

name: MARCY NELSON
from: CHARDON, OHIO
mailto: CNELLYBEAR@AOL.COM
location: RIGHT LEG, FROM KNEE TO UPPER THIGH;LOWER BACK (SACRAL AREA); genitals; buttock
My daughters hemangioma was noticed the day after she was born, 7/98.It began to grow rapidly and because of the size, our pediatrician referred us to a dermatologist. She had an MRI in 9/98 which determined it was not growing into organs or bone. She had started prednisone and had received laser treatment once in 9/98. She has significant scarring from the laser due to extensive blistering. She also had been hospitalized for probable infection. She came off the prednisone at 6 months. The hemangioma on her back had developed an open sore in 10/98 and we treated it with a duoderm dressing until 2/99 - the sore persisted for - I believe - over 5 months. Obviously, we opted for no further treatment. We will have to let nature take its course. It has not impaired her mobility or caused any obvious discomfort. It is rather extensive.

name: Helen Price
from: Grand Junction, Colorado
mailto: dad@excelonline.com
location: Neck
My daughter is 12 years old. She was born with multiple hemangiomas which we did not notice right off. She has cavenous hemangiomas which are under the skin. We were told they would probably get smaller as she got older. This has not happened, if anything they are getting larger and she is getting more. She has had surgery to remove approximately 6 hemangiomas. If they don't cause any problems we leave them alone until they become a problem. She currently has a large hemangioma that came up rather quickly on her neck. We monitor her hemangiomas with MRI's and don't know why this one grew so fast. We are seeking other means to treat these other than having them surgically removed. Any information would be greatly appreciated. Thank you.

name: Wendy Stuff
from: Waukesha, Wisconsin
mailto: wmomstuf@aol.com
location: Left eye and cheek left side of neck and back of neck
She was diagnosed at 3 weeks, after being told of the possibility that she may have Sturge Weber Syndrome. We were relieved to find out it was cavernous hemangioma rather than the previous. She is now 19 weeks old, and has been receiving treatment weekly at Children's hospital by a dermatologist, eye specialist and ENT. She is on oral sterroids and seems to be responding well. The birthmark covers most of the left side of her face and neck, but is breaking up and subsiding with time. We are optimistic at her progress, and are extremely thankful for the care and compassion we have received from the physicians and nurses at the hospital and clinics. I am still learning all I can about hemangiomas so I can seek and give the best care for my daughter. I am glad that there are support groups like this available. I wish I had found it sooner.

ame: jan nash murphy
from: evanston, illinois
mailto: jmurphy@itpld.lib.il.us
location: base of spine
Timothy was born in 1992 with a full-blown, giant sacral hemangioma on the base of his spine. In- volution occurred after 8 months of prednisone and interferon (Intron-A) therapy. Doctors also inserted a central line when he was one month to aid in blood withdrawal. At the end of his therapy, Tim manifested a weird (and undiagnosed) sleep disorder that lasts to this day. He literally screams in his sleep. As he has aged, it has slowed somewhat, but continues to be a major feature in our household. In the past two years, he has also shown signs of panic disorder. HELP!! Other than normal childhood ups and downs, his life has been uneventful EXCEPT FOR his early hemangioma experiences. Has anyone else noticed such behavior in their child? I can understand the psychological dimensions for a child who must cope with facial hemangiomas. But I'm wondering if there's any connection between early therapies and subsequent behavior.

name: Janine Penner
from: San Diego, CA.
mailto: jpenner@san.rr.com
location: left cheek
Our baby girl, Jordynn, was born with a bruise on her left cheek. At her two week check up the spot had filled in with blood and was diagnosed as a hemangioma. By 5 wks. of age it was the size of a quarter and was beginning to swell. We were told that it was a compound hemangioma. She began taking large doses of Prednisone that reduced the cheek size entirely. Unfortunately after she was weaned off of the meds it rebounded and started to grow again. The strawberry also spontaneously ulcerated and a scab formed. At this point Jordynn had laser surgery and steroid injections. The injections once again shrunk her cheek and the laser helped to stop the scabbing. Jordynn is now 9 months old and has had three steroid injections and five laser treatments. Her cheek is the same size as her other cheek and the strawberry is starting to gray in color in spots and is dark purple in others. It is soft and flatter then it used to be. Lately I have heard about about a techinique ca! lled Photoderm (sp?) Has anyone had treatment with this type of laser? I hear it is better then the pulse dye and leaves no scarring. Any truth to that?

name: Dee Martin
from: Indiana
mailto: mayhem5@SoftHome.net
location: left, upper eyelid, forehead and scalp
Ben (born 9-8-99) was originally diagnosed with PWS (Port Wine Stain) with thoughts he may also have SWS (Sturge Weber Syndrome) because of the size and location of his birthmark. When the birthmark began to grow, he was rediagnosed as having a capillary hemangioma. Ben had a CT scan at 4 weeks to determine the involvement of the hemangioma with his eye. The hemangioma encircles 3/4 of his eye and was compressing the optic nerve cavity. The swelling was causing the eye to be shut and not allowing the eyesight to develop. Ben has had oral, topical and direct-inject steroid treatments to shring the swelling and save the eyesight in that eye. When the hemangioma had shrunk enough, we began patching the right eye to force the left eye to work and catch up in visual strength with the other. Ben is now 9 months old and doing wonderfully. He will hopefully have 20/20 vision when we are through! He is the delight of our lives and we can't imagine our world without him!

name: karen Ifert
from: Connecticut
mailto: KIfert@aol.com
location: hip/side 3"x5"
My almost 13-year-old has a large hemangioma on her hip/side. It is purplish red and develops lesions that catch on clothing and bleed profusely. She had one laser therapy session 4 years ago, but it made little difference and she found it very painful--she only had EMLA cream for anesthetic. I would love to find a specialist close to DAnbury, CT who could advise us on course of action. At the very least, I'd love to get rid of the lesions. At most, I'd love to free her of the hemangioma itself.

name: Caren Millar
from: New Zealand
mailto: millars@ts.co.nz
location: Right Frontal lobe of brain
Our son Logan is 3yrs and recently diagnosed with a haemangioma in the right frontal lobe of his brain, as well as brain damage to his frontal lobe. The haemangioma showed eveidence of bleeding on an MRI. We are trying to find other parents who are going through something similar or have been through it. Thank you.

name: Susan Surratt
from: Columbia, SC
mailto: surratt95@aol.com
location: right side of neck
Caitlyn is a 6 mth old twin. When she was born we noticed a birthmark and the doctor told us it was a portwine stain. In a matter of weeks it had grown quite large and Caitlyn had to be hospitalized due to severe anemia. Caitlyn was treated at a local hospital and was given an overdose of Alfa Interferon 2a. My husband and I then took her to Duke University and she is being treated at the hemangioma clinic there. Her hemangioma did ulcerate, but it is now clearing up and she is on oral steroids. She has had severe stomach trouble but seems to be doing better on a special formula. I would like anyone to email with information on alfa interferon and effects it may have. She now has to have occupational and physical therapy because of some effects already. Any help and input would be appreciated.

name: S K GAUR
from: INDIA
mailto: sakshi@chequemail.com
location: cheeks,left side of head & neck
My daughter at present is of 7 yrs. 9 mths. old. She is suffering from Extensive Vascular Malformation, more on left side of face with huge dark pink patches since birth (color of which is reducing with the age) involving left portion of head & neck and all the soft tissues including palate & both the cheeks (almost 2/3 area of face). All the affected area of face, head & neck remains warmer than other areas. Also a clear pulsation could be seen at & below left ear & this could be felt by soft touch at between her nose & upper lip. She also has hypertrophy in palate more on right side than left . Lesion seen in the palate is soft in touch & is compressible . In short she has uneven face with very short (round) chin. Physical activities are not up to the mark if compared with other children of the same age. Under the condition of cold/congestion, she mostly breaths with mouth because of thin air passages. Further her adenoids glands has been removed at the age of 5 years because she was facing hearing problem (mostly in winter) & ENT specialist advised for the same . First time we have observed 'hypertrophy of palate' only after removing of adenoids gland though "thickened soft palate" was existing before removing of this gland as reported in X-ray (but hypertrophy became visible only after this operation). At the time of birth (06/92) her face was too puffy & proportionately big in size but it seems that it was coming to normal slowly till Human Growth Hormone treatment started in 01/96. Photographs confirms this. As it seems that Hypertrophy of Palate is also growing with the time. MRA , CECT & DSA of the face have been conducted so far. Planning for Digital Substraction Angiogram as well as 4 vessel carotid & cerebral angiogram as advised in MRA report. Here Doctors are giving different opinion one says it is Cavernous Haemangioma , one says it is Diffused Capillary Haemangioma of face subcutaneous tissues & some says it is vascular malformation of face involving all the soft tissues. Risk Involved : 1) Extensive & congenital vascular malformation may cause sudden block of breathing tube at any time. 2) Eating & Speech are being affected due to Hypertrophy of Palate (Bulgy mass at palate) .It bleeds time to time when solids are eaten which may cause excessive bleeding due to extensively dilated blood vessels of the face. Help required : We have already seen the most renowned Hospital/Institution of INDIA like All India Institute of Medical Sciences, Apollo Hospital, Sir Ganga Ram Hospital at New Delhi & Sree Chitra Thirunal Institute of Medical Science & Technology at Trivandrum As it may be noted here that no doctor in India has diagnosed the problem correctly neither they are able to advise for a treatment . On Internet I made a lot of contacts with the Doctors all over the world including at Bosten Childrens Hospital , Little Rock Arkansas Children Hospital in US & with various institutions/support groups/foundations working in this field & came to know that at Little Rock Arkansas Children Hospital Dr. Milton Waner is doing a lot of work in this field .I had also made a contact with him on the net. He needs to see & evaluate the case by doing some tests. I want to know the followings : 1) Would it be possible to get some financial aid from any foundation in US for the treatment at Little Rock Arkansas Children Hospital ? 2) I came to know that some Airlines/Support Groups in US have special travelling policy for such type of medical patient & their family members(if required) ? Would it be possible for you to provide fax & email address of these airlines so that I could contact them. Whether these airlines provide service to only US citizens ? 3) Through net & from the peoples who are suffering from such type of medical problems in US I came to know that Doctors dealing with such types of cases might be aware of the aids & facilities one can get from different institutions. If someone could contact them in person or on phone we might get the information & proceed for the treatment. WE WOULD BE VERY VERY MUCH THANKFUL TO ALL WHO WILL HELP US IN THE WAY THEY CHOOSE.

name: Cora Conley
from: Michigan
mailto: knconley@hotmail.com
location: inside skull bone
My son is 16 years old. He was recently diagnosed with hemangioma in the bone in his skull. My understanding is the hemangioma went through a rapid growth phase. This phase robbed the blood supply from the bone which caused a lesion about 4 inches by 1 inches in the bone. The surgeon removed the section of bone and performed a cranioplasty. His symptons prior to the surgery were headache pain and swelling which lasted about 3 months. When the pain and swelling subsided, he was left with a very noticeable "dent" in his head which was the lesion - or hole, in the bone. Upon excision, he was diagosed with the hemangioma. We requested a second opinion on the lab work and it also concluded the hemangioma diagnosis. I want to know more about this and am interested in any information or experiences others have had that would help me understand his diagnosis and what this may mean for him in the future. Thank you....

name: Tracey Shuck
from: Keller, Texas
mailto: traceyshuck@home.com
location: on the tongue of my 6 month old daughter
We saw a purple spot on my daughters tongue about the size of a pencil eraser when she was 4 months old. The pediatrician said he felt like it was a hemangioma and that they go away when the children are about 2 years old so we will watch it. About a month later it had tripled in size and wraped from the top to the bottom of the tongue and stuck out on the side. I became frantic, not knowing how large a hemangioma can get, and called the Pediatrician. He then referred us to a hematologist/oncologist who started steroid treatment. Whent he lesion grew on the steriods he recommended an MRI - quite a traumatic experience for me as she had to go under general anesthesia. BUT I desparately wanted to know if she had cancer or not. Thank God she did not. The hematologist/oncologist referred us to a Pediatric Plastic Surgeon who then referred us to a Pediatric Dermatologist with a lot of laser experience with hemangiomas. The Dermatologist decided that he believes this is a venous malformation and is sending us to a different specialist. As my daughter is a twin and has a 3.5 year old brother as well. I can not continue to visit so many doctors for her to then be referred and referred and referred. I started doing web searches and found the site www.birthmark.org I emailed the information to her Pediatrician and hope to get a referral set up to visit the doctor listed on the site in Little Rock Arkansas. I want to get her treated before she gets teeth and bites it or it affects her speech. If it is a venous malformation there are even graver concerns as it doesn't ever stop growing...

name: Marty Miliziano
from: Houston, TX
mailto: gjmm@dellnet.com
location: My daughter has a hemangioma above her right eyelid
My daughter is 3 months old and recently diagnosed with a hemangioma over her right eyelid. It is causing her eye to become more and more closed and we fear if growth is not stunted she will lose vision in her eye. We just started steroid treatment, by mouth, and will see what happens next. She is having an MRI done on the 14th of June (don't know what that will be like) Would love to hear from anyone with similar experience!

name: Anna Hunter
from: Cleveland, Ohio
mailto: thehuners1@cs.com
location: Lip, neck, back of head, lower back and stomach
My daughter was born with 4 hemangiomas and at 8 weeks now has 5. I understand that we need to be patient and see how much they grow and in time shrink on their own. The hemangioma on my daughter's lip has become ulcerated. We have been to a dermatologist once for laser treatment of the ulceration. It "healed" the ulceration but left a big chunk, that looks scared, out of her lower lip. Now, a new area above the scar has become ulcerated. We are scheduled for more treatments but I have not found any other stories on the internet similar to mine. I am wondering how these treatments will affect the actual hemangioma.

name: Laura Severs
from: Ventura, Calif
mailto: Seversla@cs.com
location: Left Leg
My daughter Riley was born 3 weeks early. She was born with a bluish discoloring on her left buttocks cheek and down her left hip as well as down to her calf. When she was 9 months old I was changing her and I lifted her leg and noticed a lump in the back of her left thigh. We had a MRI done and it showed a tumor that the doctors thought was cancer. Went to Seattle Childrens hospital and had Dr. Conrad tumor Specialist remove and he said that it was a hemangioma. The tumor was lodge insude her hamstring muscle and they removed two groups of her hamstring muscle to make sure they got all the arms of the tumor. At the age of 2 we had another MRI and it showed no signs of reocurrence. Now at the age of three we had another MRI because I felt a small lump in the same area and the MRI showed reoccurence of tumor and new areas of problems. I took her LA Childrens hospital where I was told that she has Vascualr Malformation, and it was not necessary to remove her muscle because this will always grow back as it has. I was told to leave this because if they do another surgery, it will just grow back. So he said that until it bothers her jsut leave it alone. My concern is if she is properly diagnosed, and we are suppose to have an MRI every six months to a year to keep an ey on the progress of growth. It is suppose to grow with her. I am hoping for some feedback on this because everything I read is not like my daughters problem. If anyone out there knows anything about her problem or has had the same expierence, please let me know. Seversla@cs.com

name: Shauna Miller
from: Southern CA
mailto: smiller@cwsredlands.com
location: Left cheek
I am 25 and was born with a lymphatic hemangioma on the left-hand side of my cheek (very close to the jaw-bone). When I was a baby like everyone else it started out very small. As I grew it grew also. The doctors my parents took me to also told my parents to wait and see what would happened. At about age 6 it was the size of a plum. The only difference with my hemangioma was that it was wrapped around the nerve in the left hand side of my face. I too have a little discoloration along the jawbone, it looks a little bruised. When I was 8 years old I saw a plastic surgeon at UCLA in CA and he removed most of the hemangioma. He had to keep some of the hemangioma there because of the nerve situation. Now at 25 I am more self conscious of it then ever before. Was wondering if anyone else has had a similar situation like this that wants to talk. Or, if anyone know any great doctors that specialize in hemangiomas, that would be very helpful too. Look forward to hearing from you. Shauna

name: Kim curtis
from: San Antonio, TX
mailto: kimcurtis@satx.rr.com
location: Upper lip
I'm have a 2 month old daughter with an upper lip hemangioma. We aren't sure what the severity of it is yet, as we can't see the doctor until the end of June. In the meantime, we have some fears that it will get too larger and hard for her to nurse, as it goes from her nostril (left side), covering the majority of her upper lip. At 2 weeks old, we thought it was a blister as she was an agressive nurser, until it continued to get larger (now protruding about 1/4 inch from her face). I'd like to hear from anyone in similar situations who can shed some additional light and information on this...such as do they hurt??? Looking forward to discussion.

name: Tracy Gartner
from: Beaumont, Texas
mailto: jcg815@netzero.net
location: two are on her head and one on her back
My daughter's birthmarks appeared shortly after birth. They grew rapidly the first year. The two located on her head are raised but the one on her back is flat. It was very difficult having people stare at my child like she was a freak. Now that she is almost 3 her hair covers them but you can still see them. We visit her doctor at Texas Children's in July. We will then find out if surgery is next since they have not decreased in size over the last 2 years.

name: claire davies
from: Cardiff, Wales
mailto: cjdavies@uwic.ac.uk
location: Upper airway
My daughter Rebecca started to have noisy breathing from about 7 weeks of age. I took her to the doctor on several occasions but was sent home after being told it was nothing to worry about. When she was 4 months old her chest started to dip inward as she was breathing. I took her to see a different GP who sent us to the hospital immediatetly. She was admitted and had a scope to see what the problem was. It was a subglotic hemangioma. We were given the option of a tracheostomy of the chace of other possible treatment at Great Ormond Street Hospital in London. We chose to go to London where she was given a steriod injection straight into the birthmark. She was in intensive care on a ventilator for 10 days before the having the tubes removed. We were home for about 6 weeks before her breathing got worse and we had to go back to London. It was found that her airway was over 90% blocked but she was fine in herself - sleeping and eating well. They then decided to remove the birthmark from the outside, as far as I know this hadn't been done in Britain before. Again she was on a ventilator in intensive care for 10 days. She is now a fit and healthy 1 year old with a scar on her neck which hardly shows.

name: Lori Atwood
from: Ft. Worth, Texas
mailto: peapie@swbell.net
location: face, tongue, throat
My 5 year old stepdaughter was born with this birthmark. I have been trying to educate myself more about it and would love to find a local support group or group with other children with the same type of birthmark that she could meet. Her doctor's have referred to it as a venus malformation and a hermangioma. She has visible veins on her left cheek up to her ear. The hermangioma is on her tongue and goes down her throat. It wasn't until just last week that another child said something very hurtful to her about her face. The child told her she was ugly because of "that thing" on her face. Before this it was usually just small children asking what it was on her face. She will be starting Kindergarten next year and hope that the children will be kind. Her doctor has been testing a new laser that he hopes to be able to use on her within the year. This laser will only lessen the visible veins on the side of her face.

name: Cheryl Nein
from: Columbus, Ohio
mailto: randy.nein@gte.net
location: left side of head, neck, and chest
My daughter Mackenzie (18 months) just had her 8th MRI done to find out if her massive internal hemangioma has started to involude. It has not. I was under the impression that hemangiomas started to go away (at least slightly) by this age? If anyone knows anything about involution I would appreciate anything that you could tell me.

name: Lenora Moore
from: Spartanburg, SC
mailto: Jasimine7@yahoo.com
location: Located on right arm from below wrist up-to arm pit
It was first noted at brith. When Kalope was three mounths old it begin to raise up and started breaking down into ulcerus places on his arm. He had a great deal of bleeding this started trips to the ER. Then his peditrican sent him to Charleston to Dr. Robin Young whom has performed 10 lazer surgery on Kalope over the past five years due to the fact that I felt my child was to young to have surgery done to close together. I feel as if Kalope condition was not evluated to the fullest and his problem is very misunderstood here in SC.

name: Daphne Washburn
from: Seattle, WA
email: mitsy@nwlink.com
location: on my daughters face
Please come visit my website about my daughter's hemangioma. The address is https://www.angelfire.com/wa2/hemangiomabirthmark/index.html

name: Stacie Ritter
from: CA
email: critters3@earthlink.net
location: right between the eyes on forehead
Her mark appeared at two weeks old. It is bright red, but flat. It is in the shape of a diamond, a little smaller than the eraser on the end of a pencil. Her pediatrician says that it is no big deal, that it will most likely go away within a few years. My problem isn't the mark, it is OTHER people. Why can't they comment on how beautiful she is, instead of "that mark?" She is now 2 months old, and I want to get rid of it. Kids nowadays are so cruel, and a young girl's self-esteem is so fragile. My doctor says not to do anything yet, but isn't it better to do something when it is so little, and she is so young? Please write back. Thank you very much.

name: Valerie Jones
from: IL
email: Vjace@aol.com
location: upper lip
My daughter is 6 months old. She has a hemangioma onher top lip in the center. She was born with it. She was given prednisone at about 6 weeks of age to stop growth. We have seen no change to date.

name: Cheryl Nein
from: Columbus, Ohio
email: randy.nein@gte.net
location: external-cheek, ear, neck- internal-neck, chest, spine
My daughter Mackenzie's hemangioma started causing problems at the age of 4 weeks old. At first we were devastated by the appearance of the external hemangioma, but that became trivial when the doctors discovered her internal hemangioma and it was causing life-threatening problems. The internal tumor wrapped around her trachea, causing it to close as the hemangioma grew. It also wraps around her aorta, goes down the back of her heart and lungs, and goes into the epidural space of her spine. We used HIGH dose steroids for a while, then used interferon injections for about 17 months. We have finally come to a pointto where we are almost off of the steroids, andhave been off of the shots for about 3 weeks. I feel a sense of peace and hope that I haven't felt since this all began. I finally feel as though the worst is over, and we can one day have a "normal" life.

name: Liliana Estrada
from: New York
email: Leestrd@aol.com
location: leftside of the nose close to the left eye
My son was born premature, at 34 weeks. He stayed in the hospital for approx. 1 months we started noticing a little red mark on his nose, I thought it was from birth. One day I asked the nurse why was the mark getting bigger, I was told my son had a hemangioma, that it would get worse before it would get better. Being ignorant to this "hemangioma" I did not ask any questions. when Matthew came out of the hospital we were advised to take him to a dermatologist, she performed 3 laser surgeries, but it made it worse and the growth was getting closer to his eye. I finally, freaked out and said there has to be some kind of specialist for this, and I was referred to a Dr. Krystal, at 3 months of birth he put Matthew on predisone and this immediately stopped the growth. Matthew is now 18 monthis and his hemangioma is turning greyish in the middle and it is still a little pink around the area. I was told that by age 4 or 5 we would know if Matthew will need reconstructive surgery to the nose.

name: Sarah Petrescu
from: Ohio
email: micpetrescu@aol.com
location: Middle of her forehead
My little girl will be 1 July 14,2000. To make a long story short. My little girl is learning to walk. On July 1 she stumbled and hit our couch and her hemangioma split wide open. There was blood everywhere. We took her to the emergency room, they tried to glue it together. It hasn't worked. We saw a plastic surgeon in Cleveland Oh (which is two hours away) he said he is going to remove it August 1st. He is going to cauterize it. I am very, very nervous. And I am not sleeping much because althought it has a scab over it, it still bleeds.

name: Kim Stater
from: Illinois
email: Allysmom99@mail.com
location: left whole side of her face including eye, nose, mouth(inside&out) and inside of ear
My daughter, Allyson, was born with what they thought was a port wine stain across the whole left side of her face to her ear. 4 days later her upper lip began to ulcerate. That is when they thought maybe it could be a hemangioma. They immediately put her on prednisone, and she had her first laser surgery when she was 29 days old. They thought that the laser could possibly stop the ulceration. After the surgery, she developed more ulcerating, was in the children's hospital for a week until they got it stopped. 2 weeks later she had another laser surgery and this one caused an ulceration that extended up into her nose. Needless to say we had no more laser surgery after that. The laser surgery did get rid of most of the redness but it caused a great deal of scarring and she only has half of a top lip now. It is also a cavernous hemangioma, so it began to swell at about 9 months when they started decreasing her prednisone. She is now 18 months old. It has stopped! growing but is not yet in the i nvolution stage. We get all kinds of stares when we go out but that doesn't stop us. We think she is gorgeous! Children seem to be a little frightened of her and she has been called a monster baby by some children. It really hurts and I am scared of the day when Allyson realizes what they are saying. Please feel free to e-mail me at anytime!!

name: Kelsey
from: iowa
email: kelby_40@hotmail.com
location: right whole cheek
When i was about 3 months old my right cheek became red and then as i got older it grew into a hemangioma birthmark. Then when i was about 2 my parents brought me to a doctor and they kept track of it for a few weeks, and they said it was growing rapidly. So i need to start surgery as soon as possibe, because it was affecting my eye sight and also my hearing. Since there is not any plastic surgens near where i live i had to go to a doctor about 150 miles away every time i had a check-up or surgery. Now that I am growing up and people are so immature, and they dont know what I have all been through. They think it is funny to call me names such as "scar-face". Dont get me wrong or anything I have friends and they do stick up for me but other people that dont know that YES i have been through a lot such as 15 surgerys and a lot of humiliation. Now that they can not do anything else but remove the scar, and I am waiting and excited till that day when that happens!!

name: Colleen McCasland
from: Florida
email: ronncoll@bellsouth.net
location: right back of neck at the base of skull
We live in Stuart, Florida which is about 20 miles north of West Palm Beach. My daughter is 13 months old and has a cavernous hemangioma about the size of two golfballs on the base of her neck. I have been to several different doctors a dermatologist, 2 plastic surgeons, and am currently seeing a pediatric surgeon. We have tried the prednisone with no reward. The hemangioma is quite large and she is constantly pulling on it. It has recently started to scab up as well. I am unhappy with my current course of treatment. The pediatric surgeon is currently using the "wait and see" approach. When I visited him last he told me that in his opinion the hemangioma would not involute much more than it already has. He told me surgery would be risky and could leave my daughter with an open hole at the base of her skull. He said there probably wouldn't be enough skin to close the hole because the base was very wide. He then told me that he would perform the surgery if I c! hoose to do so but it would be v ery risky with a very high chance of infection. He said it was my call even when I asked him for his opinion. I don't want my daughter to keep being pointed at and whispered about every time she leaves the house. I am not even sure if my HMO is going to allow the surgery. I was wondering if anyone could recommend any good doctors in our area that specialize in this field. And if not if there is any information you could give me that you think might help me! Thank you so much for your time and your consideration!!!

name: Corda Hill
from: Pennsylvania
email: hillabee@yourinter.net
location: entire right buttock extending down to Right knee
Had initial surgery at Children;s hospital Pitts. pa. Dr. Gordon , 3 months ago , on June 28 had second surgery, they anticipate 4 or 5 more surgeries, and I would like information on this type of malformation and anyone who has had similar surgery. He was born with it and was initially diagnosed with Hemangioma .

name: Lisa Munson
from: Texas, USA
email: lisa.munson@interflect.com
location: bridge of nose
My daughter's birthmark first appeared at 6 weeks as a small red dot on the bridge of her nose. It stayed flat and unchanged for about 2 to 3 weeks, At about the third month, it started growing rapidly. It is now about the size of a large grape, remains skin-colored and still has a small red dot. Her pediatrician recommended seeing a pediatric dermatologist, who was basically NO help. I'm a former medical reporter and in the medical media relations business and knew of a well-respected pediatric plastic surgeon in Dallas. He has a clinic devoted to cranial facial deformities and vascular malformations/hemangiomas. I have complete trust in him; he's exceptionally knowledgeable about these and treats hundreds of them. He's recommending oral steroid therapy for 6 weeks. The only side effects we are aware of include GI upset, irratibility, cataracts, loss of appetite, increased appetite, sleepiness and a few others. Are there more serious ones? He's using an usual cortiso! ne called Cortef. His philosophy is treat them quickly when they involve the face. My only regret is that I didn't take her immediately to a plastic surgeon well-versed in hemangiomas. DO NOT WASTE YOUR TIME WITH PEDIATRIC DERMATOLOGISTS AND PEDIATRICIANS. Too many go by the old school of thought, "they'll eventually go away on their own." From what I've researched, they don't and modern medicine offers many choices today. As a parent you have to take into consideration the growth cycle potential (in our case it may affect her vision) and the cosmetic aspect. ONE IMPORTANT NOTE, DOES ANYONE HAVE ANY RESEARCH ON THE CAUSE OF HEMANGIOMAS? SOME THEORIES I'VE COME ACROSS INCLUDE: 1. high levels of estrogen 2. genetics 3.a newly discovered immunohisto-chemical marker (just announced Jan. 2000)

name: jessica
from: texas
location: left cheek under ear lobe
Catherine was born w/ a strawberry birthmark. When she was about 1 month, we noticed that a bump was forming under her ear on her left cheek. Her ped. told us that it was a hemangioma and that it would go away. He said that it is common and not to worry...but...it stopped growing at 4.5 months but has started again. It takes about 3/4 of her jaw line and is raised about 1/4-1/2 inch. It is a pink-red color. I am more worried about it than anyone else and would like to speak w/ someone who knows what I'm feeling

name: sharon mann
from: ohio
email: smann20194@aol.com
location: outer thigh of left leg
she was born with this birthmark and when she was just about 2 yrs old, we took her to the cleveland clinc and had laser surgery done. This birthmark bleeds and it can bleed for 15mins to an hour at times. We are at a standstill as no one knows how to help us. We had the laser surgery done and it made the birthmark lighter but the so called "berries" that bleed slowly came back 10 months later. She is 14 yrs old now and deals with this pretty good but we are still searching for help and answers. With all the blood in this left leg, her leg is bigger than the right leg and her one leg is 1/4" shorter than the other. she has had surgery done on it several times and nothing seems to work, the birthmark itself has become lighter over the yrs

name: Daisy Zabala
from: Philippines
email: daisyz@dar.gov.ph
location: lower left shoulder
My daughter is 7 month old now. I though it is just an ordinary bithmark which appeared when she was 2 weeks old. Its size was about 1/2 inch. Now, it has grown more prominent one inch and has raised. My pediatrician informed that it is hemangioma, and i was alarmed. That is why, here i am sharing my daughter's experience. For now, i am observing this birthmark, if this eventually disappear when she grows old. I am still looking for a specialist for this. My daught still lucky and I thank God for it, for hemangioma did not grow anywhere in her face.

name: Liz King
from: Sacramento , CA
mailto: SIMBA555
location: Right side of tummy
Candice is 10 months old and has a strawberry on her right side of her tummy. It has been growing very fast and I don't know what to do about it. If you have any advice please write back.

name: Helen
from: Sacramento, California
mailto: treschq1@aol.com
location: left side of head, neck, chest and left arm, lower lip enlarged
I am a 60 year old widow with six grown children and am on the Executive Staff of the Episcopal Bishop of my diocese. I have, what had been described to me all my life as a "cavernous hemangaeoma", until my recent experience with treatment here in Sacramento, California. The mark involves the left side of my head, face, down my neck and part of my left chest and arm, and also my lower lip became quite enlarged as I grew older. My parents took me to several "specialists" in London, England when a child, and no one chose to touch it. (of course there was a war on, and they had more important things to deal with) I had an "anonymous benefactor" step forward when in high school, offering to send me anywhere at any expense to seek treatment, but I declined, remembering the parade of doctors' offices and nodding heads I had experienced. However, in 1962, prompted by the pain of a divorce, and having some complications as a result of my first pregnancy, I took courage in hand in Denver, Colorado and found a doctor (after a couple of attempts) with an optimistic spirit. His plan was to tie my external carotid artery (thinking this would reduce the blood supply) and did considerable reconstruction in a series of surgeries on my lower lip. The results were quite "pleasing". I married again, and had five more children, but each pregnancy, especially the last, seemed to precipitate a little more aggravatio! n with the mouth and gum area. By the birth of my last child, we were living in Sacramento, and I was referred to Stanford University and the laser department there. We did some "test patches" with the argon laser which produced huge blisters and burn like results.(No thank you) A cranial arteriogram was done, and it was determined that the carotid artery had regenerated itself, and "then some". So further plastic "reconstructive" surgery was done on my lower lip. The results were "pleasing", but more scarring. Two years ago, during a routine checkup, my doctor urged me to look into the new laser treatments being offered. So I did. A seriies of pulse dye laser treatments in various areas has definitely reduced the intensity of color, especially in the cheek areas. (At first there was some scabbing, but it healed very smoothly). There was not much effect on the bulk of the lower lip though (which had grown again over the years) even though some laser treatments were directed precisely in that area. A cranial arteriogram was done again in January of 1999, and the doctor's opinion was that he did not wish to intervene, as he felt that the treatment he could offer would be too precarious and painful. (It would essentially involve "freezing" the blood vessels.) So I was referred to the Plastic/Reconstructive Department at UC DAvis Med Center. The doctor's assessment was that I had a "venous malformation" and he could indeed re-form my lower lip. This was done on April 19 and is progressing extremely well. He has totally re-shaped my lip, by taking out several "sections". The results are far superior than either of the other previous surgeries. What was especially encouraging, is that there was very little bleeding (obviously something that is a challenge in working in these areas), and I was able to go home at 3 o'clock, after surgery at 10:30 a.m. I am scheduled for a further "face-lifting" procedure on the left side of my face and chin to "de-bulk" a lot of the tissue inside my mouth. While I know full well that the physical appearance is not everything, it is really "nice" to have one's facial contours a little more defined. I do chuckle at all the people who tattoo themselves, while some of us are busily trying to undo what God tattoo-ed!!!!!!! I encourage everyone to keep searching for the right doctor. (I would also add my insurance has covered all the procedures of the past couple of years). And to the reader....... your child has been granted a gift of understanding that only a privileged few can grasp. He/she will be the greater for it, and will bring compassion, sensitivity and a sense of joy in all things to a hurting world. This child will have a deeper understanding of living, and of him/herself that will enable him/her to be a giver and not just a taker in this journey we call, "Life". Celebrate the uniqueness!!!!!! And do write if I can offer any words of encouragement. Helen

name: Kimberly Mayes
from: Hartsville South Carolina
mailto: rwehvnfun1@aol.com
location: on the lip, bigger than her nose, obstructing one nostril
Morgan was born at 27 weeks on March 4,2000. The hemangioma started as a little dot thought to be from the nose canula. After being taken off the canula, it grew rapidly. When it began to obstruct her nostril she began taking prelone orally. The hemangioma is bigger than her nose and obstructs one nostril. The prelone seems to stop the growth but does not shrink it. She wears socks on her hands to keep her from grabbing it. It is painful now because the center is raw. She cries when I feed her because the bottle pushes it up. I am from a small town with limited resources. The doctor has only seen one other hemangioma. I am scared to death to just "wait until she is two for it to go away". There has to be other options. I am looking for any information or comments. I feel so alone. Thanks, Kimberly and Morgan Mayes

name: Agnieszka Millhouse
from: NY
mailto: emachinery@yahoo.com
location: lung
My mother recently underwent a serious lung operation to remove a large tumor. It turned out that her tumor was deemed dangerous enough by her doctor to deem it necessary to remove the entire lung. The doctors have since informed us that the desease she had is called Hemogioma, however I have searched everywhere on the web---medical dictionaries, health sites, general web searches,etc.--- yet I have been unable to find any information about hemogioma until I found your informative site. Even the word itself fails to turn up in searches; there are no definitions for the word that I've uncovered in over 2 dozen on-line medical dictionaries. From FAQ i gathered that Hemogioma mostly occurs in small children...what about cases such as my mom's? Were we given the wrong information from my mother-in-law's doctors? Please, if you can, let me what causes the disease specific to lungs. Additionally, what is the worse case scenario if it goes untreated in lungs, how many such cases are reported in the US and what the best treatment is? If you have any additional information about this lung desease, please let me know. Your insight would be most valuable and appreciated. My family eagerly awaits your response. Many sincere thanks, A. M.

name: Shelley Smith
from: Monticello Arkansas
mailto: shelley_jordan@yahoo.com
location: neck, under her chin
My daughter, Jordan, has had 2 infections in her birthmark, and we are being treated by Dr. Waner at Ark. Children's Hospital. After becoming ulcerated, Dr. Waner has us scheduled for removal in July.

name: ROBIN BARTOLI
from: CT
email: MORSEMVG@AOL.COM
location: DAUGHTERS CHIN
MY DAUGHTERS STRAWBERRY HEMANGIOMA CAME OUT ON HER CHIN ABOUT 10DAYS AFTER HER BIRTH. IT STARTED SLOWLY GROWING TO OVER THE SIZE OF QUARTER. IT WAS LARGE AND PURPLE AND BUMPY. I BROUGHT HER TO 5 DOCTORS WHO TOLD ME TO LEAVE IT ALONE. SHE IS NOW 2 AND QUESTIONED WHATS ON HER CHIN. I TOLD HER A BEAUTY MARK BECAUSE SHES SO BEATIFUL. IT HAS SHRUNK ABOUT 1 INCH IN DEPTH AND IS MUCH LIGHTER. ITS NOW A LITE PINK ITS HAS FADED A LOT, BUT NOT ENOUGH FOR US. SHE IS GETTING POKED IN THE FACE BY KIDS ASKING WHAT IT IS. THE WORSE ARE THE GROWN UPS ASKING WHATS ON HER FACE OR DID SHE WALK INTO WALL OR FALL. I HAVE BEEN TAKEN ABACK BY THE REMARKS OF STRANGERS. THIS WEB SITE LETS ME KNOW IM NOT ALONE. IM PLANNING ON BRINGING HER TO ANOTHER DERMATOGIST. I WOULD LIKE TO LOOK INTO LASER OR STERIODS FOR TREATMENT EVEN THOUGH THEY SAY LEAVE IT ALONE.

name: Sunny
from: Nebraska City, Nebraska
mailto: ck24802@alltel.net
location: almost the entire right leg and part of daiper area.
When my daughter was born in january of 2000 we noticed that almost her entire right leg was covered with a purpilish colored birth mark. A few hours later I noticed that it was also on part of her daiper area. I had never seen a birthmark like this before. The doctor assured us that it was not deep enough to cause any problems but it still worries me. Aimee is now 4 and a half months old and so far we have not had anyone make any comments about it, but i'm sure eventually we will have to deal with that. If any one has any advise on how to handle wierd stares and comments I'd really appreciate it. The birthmark doesn't bother anyone in our family but I'm afraid of how Aimee will feel about it when she gets older. Thanks alot.

name: Jichao Sun
from: San Diego, CA
mailto: jichaosun@yahoo.com
location: Left cheek
My son Jerry, 6 months old now, has a strawberry in his left cheek. It grows fast between 1-5 months. First his Pediatrician said it will take care of itself and eventally gone. So we didn't concern it much. A few days ago a demartologist said my son need to be treated oral medication. This remind us the seriousness of his illness. I found this site very helpful. The hemangioma size is 2 by 2.5 by 1.5 cm. It does't influence any fuctions. I'm very concerned about the side effects of steriod or predisone and their effectiveness. Is there any case similar to my son's? How do you think the effectiveness of oral medications? We must make decison for this within a few days. If my son will not be treated, what are possible consequencies? Is it OK if we observe the development of his hemangioma for a year, if the situation is worse, we select treatments (is it too late for treatments?); if it is better, he doesn't need treatments. We greatly appreciate your valuable information!

Jichao

ame: John Trickey
from: Union, Ohio (Dayton area)
mailto: trickeyjr@webtv.net
location: on left cheek
This concerns my grandson, Michael, who was 3 years old in January. His mother Stephanie (my daughter) first noticed what was later diagnosed as hemangioma when he was 1 year old. Another note: the spot where the hemangioma is now had fuzzy hair there when he was born. My daughter has found a Dr. that did do an MRI on Michael, but his idea is to do nothing in the hopes it will go away. Other doctors didn't test, but told her the same thing--do nothing. It is still growing and at what appears to be a more rapid pace now. In the last two weeks Michael has begun to complain that it is bothering him. We are very upset and frustrated at this point. We don't know where to turn to get something accomplished. Any advice would be greatly appreciated!

name: Holly Peterson
from: Indianapolis, Indiana
mailto: Harrellhol@aol.com
location: One Strawberry on left eyelid & one deeper purple one on the nose between the eyes
My girl is 6 month old and has 2 hemangiomas. One strawberry on the left eye lid and one deeper purple between the eyes on the nose. They are growing bigger each month. I have a good Doctor watching them. The problem is they are looking really bad and the looks I get when I have to bring her in public are terrible. The "OH, your baby had a bad fall allready". I want to do something about this, before it really messes up her eyes. Yet I want to the safest thing too.Holly

name: Shelly
from: Iowa
mailto: shaylee_1999@yahoo.com
location: covers left arm, breast, armpit, entire shoulder blade, and also goes down my left side
I might not be in the right place here gut I'll give it a shot anyway...I am 29yr old female who has never been able to accept this monsterous stain no matter how hard I try, I have a very low self-esteem and always have had ever since I was this tiny little girl. Maybe if I could talk to someone who knows what I'm going through, I've never had any kind of contact with anyone who knows truely what this is like. All the info I have read up on I find the portwine stains are on the face, if you know of a support group where people can talk with one another either by e-mail or anyway for that matter I would deeply appreciate it if you could give me any type of info on that! There is so so much more i could write with 29 yrs of experience having to live with such a thing, but I'm not sure I'm at the right place. Hope to hear from you!!! Shelly

name: Cheryl Rose
from: Australia
mailto: cherylrosen1019137@garbo.nepean.uws.edu.au
location: Right forehead, right eyelid,right eyebrow,nose - both nostrils, under upper lip.
My daughter Michelle, was born on 20th May 1998, she is one of twins, her sister has no haemangiomas. They have three other siblings. I have been a single parent since the twins were born. My daughters were born at 34 weeks gestation. She had a small red mark on her right forehead. By the time she reached 3months she was developing breathing problems. Her treatment included 5 months of predisone and then 3months of interferon injections.Michelle has required continual treatment because the haemangioma didn't stop growing. I understand that has a general rule these conditions stop growing by 6 months. Of course my daughters' have not stop growing. After 3 months on interferon, her haemangioma, seems to have calmed down, with thinning out and colour changes. After 5 months her eyelid has flared up again and the size of her nose is growing again. Much to my disappointment, after consultation with a number of specialist, I have agreed to put Michelle back on int! erferon. I have agreed because I want non-invasive treatment for my daughter. The option of laser treatment is not encouraged in Australia, and I have to agree with this current decision. However, I am interested in hearing from other parents who have had similar issues with their childs haemangioma? Have any of you members had success with 'interferon'? Please contact me at your earliest convenience, I do have some photographs if any one is interested. Regards Cheryl Rose

name: Jennifer Ann Hall
from: Murrieta, CA
mailto: jenniferannhall@yahoo.com
location: Internal tumor in upper right humerus (shoulder)
I really feel like a freak now! I've read all of the other cases listed and I am definately a case for the textbooks. I am a 32 year old woman who was pre-mature at birth, fair skinned and have two normal birthmarks. I never thought I had any problem of this nature. At age 28, my hemangioma was discovered after 3 months worth of misdiagnoses. First they thought the pain in my hand was tennis elbow, then rotator cuff disfunction. Finally, an x-ray showed a marbelized growth in my shoulder bone. After a bone scan and an MRI, a very confused orthapedic specialist sent me to a bone tumor surgeon at Scripps in San Diego, CA. Even the CAT scan revealed nothing conclusive, so they scheduled biopsy surgery. The tumor bled so profusely they removed it all and filled in with bone cement. They half-heartedly attributed it to hormones I was taking for infertility a few years earlier. A year later, I tried to have a second child, took the hormones again at the reassurance! of my OBGYN and a year after th at(& no baby), it returned with a vengeance! It had grown twice as large and was outside the bone. They were going to remove up to five inches of my bone, replace it with donor bone and an allograph (metal pin and cap). They were convinced it was cancerous now and were talking about radiation (amputation was not out of the question). I have never been so scared in my entire life - and I'm a veteran of trauma. This was to be my 6th surgery. My son was only three, my career as an educator had just taken off, I'm right handed and very much into every craft imaginable. My whole world came to a halt. When you put your faith and hope in the medical profession to know what to do, and they don't, it's very unnerving. They went in and removed the tumor again - it was benign (THANK GOD!) It had merely regrown and followed a natural fissure in my arm and had seeped through. They filled in with more cement and did not have to do the allograph procedure after all. They took me off ! of all types of hormones an! d B vitamins that could stimulate further growth and a two year waiting period to try and get pregnant again - thoroughly natural. They seriously beleive that if it comes back it will probably be cancerous. We have another 8 months to wait - it seems like an eternity, but at least I'm still here to wait it out! If anyone has any similar occurance, please contact me! I feel very alone out here. Thanks!

name: Gabriela Jimena
from: Hayward,Ca.
mailto: pumpkin_pie71@hotmail.com
location: Right arm above elbow.
Hi everybody my name is Gabriela and I have two very beautiful daughters.They were both born with hemangioma birthmarks.My oldest daughter is now 3 years old and hers is gradually going away,but my little pumpkin pie is only 16 months old and hers seems to be growing more and more.We asked numerous doctors about it including my uncle who's a doctor in texas about it and they all seem to have the same answer....It's going to eventually go away just leave it alone.Alanas birthmark is so big on her arm that when people see it they just can't stop staring at it,I even had some people ask me if she had an accident or if I burned my daughter.I think that that one was the one that hurt me the most.For somebody to think that I could hurt someone so inoccent and small especially my little daughter.Every day I wake up and get her dressed and put back all the little dresses that she really cannot wear because they are sleeveless and sometimes i just cannot hadle people looking ! at us the way they do.One day wh ile Teresa and Alana were playing out in the yard Alana came in the house and decided to pull a scab off her birthmark that had form,when the scab came off blood stared to pour out and would not stop.I think that that was one of the scariest days of my life.When little childern come and ask me about Alanas hemanioma I just tell them that an Angel kissed her right there.And they just smile.Thank you for your time.We would love to hear from you....God bless you all.

name: Rajagopal
from: Southern California
mailto: rajgopl@ibm.net
comment: My daughter is 15 months old. She has a compound hemangioma on her nose. She had gone through the traditional treatments of prednisone (oral and injection) and laser treatments. The hemangioma shrunk to some extent. She will be undergoing a surgery next week in San Diego Children's Hospital. I would like input from anyone who had gone through such suregery. I would also be happy to share our experience.

name: J. Langtim
from: Cincinnati, OH
mailto: JLangtim@yahoo.com
location: left cheek
My daughter was diagnosed with a hemangioma when she was one month old. It grew for a while, it is about two inches long. It appears vascular and red. She's had a CT and everything appears normal and it stopped growing and there is no bulging...it is flat. Her ENT said it is wrapped around her facial nerve so surgery is out of the question. But I wanted to hear from people regarding lasers and other treatments. She's only two, so I'm not sure how long we should wait. I've read early intervention is better.They keep telling us it will probably fade, but if it doesn't I would like to know our options. Coincidentally, I have a port wine stain on my left cheek which I have not have removed so I understand how mean kids can be teasing etc. Thanks, please e-mail w ith advice or options. Julie

name: Allison
from: Perth Western Australia
mailto: amaka@optusnet.com.au
location: right cheek and stomach
Hi, my son Kellan was born 7 weeks premature and on about day 4 or 5 he began to develop an hemangioma on his right cheek. At first I thought it was caused from the surgical tape used on his face to get his gastro tube in his nose. He is now 3 and 2 months and the mark on his cheek is about the size of a dime (US) or a 5 cent piece (Aus). It has very slowly begun to turn a slight gray color only on the surface of the skin. He will start kindy in Feb 00 and I'm slightly concerned about teasing but I haven't yet stressed to much over it. Our experience has shown that children under about 4 or 5 are more curious about what the mark is and how he got it. Then they tend to accept it and continue to play. However, I have to admit that I more so worry about the later years so I am beginning to do my research now. Are there any of you out there that have decided to let nature take it's course? What have your results been? Has the hemangioma completely gone or only sligtly fad! ed? I have been told that lettin g it go away on it's own is the best option. I don't see my son's hemangioma "going away" on it's own so I feel it's time to look for alternatives. Anyone please email me and let me know your experiences. My son is a totally happy and ENERGETIC child. He is aware of his birhmark but it totally doesn't faze him. Looking forward to hearing from everyone.

name: DeAnna Goodsell
from: Eaton Rapids, Mi
mailto: deedeeg00
location: on back of left arm
My experience is not as alarming as some of the others that I have read, but it is something that plagues me often. I have twin daughters who just recently turned two. They are happy, healthy and energetic. One has a hemangioma on the back of her arm. It doesn't seem to bother her much most of the time because it is located in a spot that can easily be hidden. But in the summer, I like to dress them in cute matching sun dresses and of course short sleeved shirts. The tumor is quite large and draws attention from strangers and even friends and family. People like to pretend that it doesn't bother them, but out of the corner of my eye I can see them trying to get a better look. At daycare, the older kids look at it and make comments such as: "ooh, gross!" or "come look at this". Even her sister every once in a while will look at it and touch it. I know that kids are curious, but I can hardly stomach the thought that people are going to see nothing but this wh! en they see my daughter. Every parent wants the best for their children and I have a very hard time sending her to daycare knowing that she is going to be stared at or picked on. I guess in the end it will only make her stronger but I want to protect my children from enduring any and every possible pain in life. I wish that there were more that I could do, but their doctor doesn't see an urgency to do anything with it because it's not life threatening, and unfortionatly, I am trying to finish with my degree and am unable at this point in time to cary the best insurance so I am also unable to afford much for a second opinion. I feel stuck and am not quite sure what to do at this point.

name: Darrin Whitt
from: Vermilion, Ohio
mailto: wwhitt0408@aol.com
location: entire right leg and right pelvic area, splotches on left leg, buttocks and back
She has a light portwine stain that covers nearly 1/3 of her body. We started laser treatments on her at 3 mos. of age. She has undergone 5 flashlamp laser treatments, 2 on her entire right leg, one on her diaper area, and 2 on the blotches on her left leg. We have seen a definite improvement. There is a visible line on her right groin area where the laser treatment begins/ends. Her right leg is about 2 shades darker than her other leg. She is presently 13 mos. old. We figure we will have to continue this treatment for another year and a half, lasering every 3 mos or so. I have heard of people who have been told that similarly large PWS's can't be removed with laser and others who believe it can be. I'm interested in hearing from past patients.

name: Shira & Itsik Afriat
from: Israel
mailto: itzhak-a@teledata.co.il
location: The center of the nose & under the left thumb.
Right after birth the doctor's diagnosed Hemangioma on the left foot, under the thumb. Two weeks after birth, another Hemangioma started to show in the center of the nose, mostly in the right nostril. Our daughter, Roy, is 6 months old. Now, both Hemangiomas are bigger than they were. All the doctors we saw, recomended us to wait, and did not suggest any other treatment. We wanted to ask, if you can recomend on other treatment. Sincerely, Shira & Itsik

name: Lynda Sweet
from: New York
mailto: Lynda--Sweet@webtv.net
location: Left Leg (Klippel Trenaunay Syndrome)
My son Tyler was born April 6, 2000, now six weeks old. he was diagnosed last week with Klippel Trenaunay Syndrome, at the time of his birth he had a portwine stain on his left leg extending from his hip to toes, doctors told me that this was just a "birthmark" after doing numerous tests and the vascular surgeon told me to come back in a year and not to worry about it, well after tyler came home from the hospital( he was in for two weeks due to jaundice and he didn't like to eat) I noticed his left leg was growing larger then the right, the foot was a 1/4 inch larger then the right and the circumference of the leg was larger, i took tyler to his pediatrician who stated he thought that this was this klippel trenuanay, he now has appointments with more dermatologists and an orthopedic surgeon, his leg is discolored with the port wine stain, but it is flat and smooth skin he has no bumps or bleeding, the length of his legs arent any different at this time. I am lookig for any information from somone whos been thru this to let me know wat to expec and what worked what didnt. Thank you for any help

name: Theresa
from: Commack, NY (Long Island)
mailto: oyknee4u@aol.com
location: Queens, NY
This is about myself... I am a 35 year women with a PWS on the left side of my face. It runs from over my eye down the side of my nose and upperlip over my chin and spots on my the middle of my neck. I have had about 6 laser treatments over the past 10 years or so. I feel that it did make it a little ligher, but then with age it seem to have gotten darker. I am very imbarrassed about it. I never leave my home without covering it with dermablend makeup. But then i feel like i have a plastered face. I wish more people were updated with this birthmark.

name: Deidre Claunch
mailto: dedarris@aol.com
location: right side of neck around ear, inside throat, up into nostrils
My name is Deidre, I am 28 years old and was born with a hemangioma. It is noticable on the right side of my neck and up around my ear. The majority of the hemangioma is located in my throat, around my tonsills and up into my nostrils. I am going into the hospital May 18, 2000 for a tracheotomy, I have been diagnosed with severe sleep apnea caused my the blockage in my throat and nostrils. I understand from the web page that you mostly deal with parents of children with hemangiomas, I hope that my experiences can also help you.

name: Gaetane Gagnon
from: Charters Settlement, NB, Canada
mailto: sergae@fundy.net
location: Upper right side of forhead
About a week after our daughter was born, we notice a slight discoloration on her forehead. At first, we thought it might be a bruise resulting from the birth. But after another week, it started to grow and turn red. We soon realized it was a strawberry birthmark. She is 9 months old now, and it is now about a nickel in size, quite red and slightly raise. I believe it is starting to go away. It is changing color, turning a slight grayish/blue. We don't even see it anymore, but like most other parents, I am tired of the stares and comments. I had one very good experience though. One mother told answered her daughter's incessant questions by explaining that the birthmark was so "her mother will always be able to find her baby among all the other babies. I have really gotten strenght and good info from all the sights regarding hemangiomas. I am really disappointed I didn't look it up before. All the stories where so similar to our own. If anyone would like to see pictures of our beautiful daughter, please email us and we will forward some site links.

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