nevus sebaceous

[mimmi]

My boy was born on 24th and he had a scar on his head , dime size oval shaped area with no hair. He was referred to the dermatologist who said that before puberty he would need to remove the scar to prevent any kind of cancer. I was going thorught he internet which talks in length about nevus sebaceous syndrome which is a set of symptoms of mental retardation, seizures, etc. My son appears to be very healthy, nurses well and I dont see anything out of the ordinary for that age. Please let me know if oyu all have any information. I want to know of nevus sebaceous always come with the syndrome, or this is just a scar that needs to be removed at puberty. Please reply soon. Thank you in advance

[nanakay]

sometimes to much research can be a dangerous thing.  Listen to your doctor they aren't going to keep anything from you.
If they said it was just a scar then it is probably just a scar.
I know it is hard to not to worry about your baby. But sometimes we way over think things.  best wishes to you.

[skd7474]

My nephew had that when he was born. He had it removed when he was around 3 (I think) he is now a healthy 14 year old punk lol. His father also had it and had it removed when he was younger. They say it is hereditary.

[nurse12hr]

There is another condition, called aplasia cuteus congenica (that is probably a gross misspelling!)

here is a link:

http://www.emedicine.com/derm/topic32.htm

There are probably pictures of it somewhere out there.  If your infant looks and acts normal and the docs don't seem worried--I would relax about it.  Good luck!

[quigs]

Don't worry. I had a nevus sebaceous at birth the size of my ear above my left ear. It was basically a bald spot . When I entered puberty I began to get sores (probably zits like other skin). The only risk to your child is possibly developing cancerous and non cancerous growths later in life. I had mine removed in the 7th grade and am now 31 and quite uneffected. I believe the info you have been reading has to do with linear nevus sebaceous which is totally different. Think of it as a bad mole.I understand I have 3 children myself. I hope this reaches you. KQ

[quigs]

Don't worry. I had a nevus sebaceous at birth the size of my ear above my left ear. It was basically a bald spot . When I entered puberty I began to get sores (probably zits like other skin). The only risk to your child is possibly developing cancerous and non cancerous growths later in life. I had mine removed in the 7th grade and am now 31 and quite uneffected. I believe the info you have been reading has to do with linear nevus sebaceous which is totally different. Think of it as a bad mole.I understand I have 3 children myself. I hope this reaches you. KQ

[Abrammann]

My son was born with a large nevus sebaceous on both cheeks 2 spots on the back of his head on the back of his neck and on his chest.  He is 1 and he has already had to have a growth removed.  Nobody seems to know **** about this. I need help. I need information I need to see pictures I need advice. Please.  My email address is ***@**** please contact me through my email.

[golish mom]

My son has a Nevus sebaceous on his head, and we are the fortunate ones because we only have one.  We are going for surgery in Sep, 2007 to St Johns  in St Louis.  A child surgen named Dr Coln is going to be removing it.  His info is Childrens Surgery Associates
                                                         St. Johns Mercy Doctors
                                                          621 S New Ballas rd Suite 6018
                                                           St Louis, Mo 63141
                                                             314-251-5940

[Jennieeve]

I have a sebaceous nevus.  I am one of those incredibly rare individuals who has it on my arm.  No doctor has ever conciderred it worth being concerned about, and certainly every time the posibility of removal has arisen, I have been told that it is merely a cosmetic choice.  It never grew any lesions during pubery, and is the only part of my body that is not freckled.  It's just funny looking skin, I wouldn't worry about it.

[shaw39]

I just had my 4 year old daughter into the Plastic Surgeon to discuss the removal of a Nevus Sebaceous on top of her head.  I was told that as a child with the NS, there is a 25% greater risk of it becoming cancer forming if not removed.  We will have the surgery in the first month of 2008.  If it was an adult getting the surgery they would use a local to numb the area and cut a football shaped incision to remove the NS.  Since a 4 year old would not sit still for such a surgery, she will have to be put under.  Should be about a 3 hour visit in total to the doctors  (we are familiar with this portion, my 5 year old just had her tonsils and anoids out about 2 weeks ago).

[stac9]

Will you please let me know how the removal works out.  My daughter was also born with a NS on her right check about 2 inchs long we were told by the dermatologist to wait until she hit puberty to have it removed.  She is going to be 8 in february and we have not seen a doctor concerning this since she was 3 or 4.  Thanks and Good Luck!

[aadragonfly]

My daughter is also 8, she has an NS on her left side right by her ear about 2 inches long, and we were just told today to have it removed this summer.  I'm scared and worried,....and going a little crazy looking up information, which I think is making it worse.  There are some scary stories and pictures on the internet...don't go there.  Stick with what your doctor says, and have it removed when the doctor suggests, which will probably be soon.  Girls go through puberty earlier nowadays than before, so he suggests before she turns 9.  I think that greatly reduces the risk of it becoming cancerous.  We really had always assumed it was a harmless birthmark, and her hair grew in and covered it, and it never became an issue.  All of a sudden, we're in a panic.  I'll be glad to make an appointment with the actual doctor that will do the surgery so I can get some more information.

[rb05]

My son was also born with a NS on his right cheek near his mouth.  We had it removed when he was around 3. Old enough to not touch the incision sight that much.  It was a simple process for us.  We were told to go ahead at a young age and remove it (1) he wont remember it (2) the scar from the surgery will be less (3) he wont have to go through school and all the kids asking what it is (4) why wait until it turns into something else.  They had to make about a 2 inch incision (moon shape) next to his mouth.  The surgeon did a great job....made it look like his laugh line (if he was old enough to have one).  He is now 7 and you have to look real close to even see the scar....so glad we did it.

[capebaby]

My 7 month old also was diagnosed with NS, I was OK with the recommendation to wait to have it removed until he was older, it is on the back of his head, HOWEVER it seeps and bleeds, and it does appear to have gotten a little bit bigger. Does anyone elses child NS seep and bleed???

[Bruno411]

2/7/08
My son was diagnosed with a NS soon afte birth. It is in the shape of a heart on the back of his head(to us is good luck). At first the Derm. said that we would monitor it every 3-4 months and that it would be best to see what happens around puberty. Luckily my sister is a Dr. and stated her concern and encouragement to talk w/ the Dr. about seeing a Peds Derm at the local children's hosp. Well, that would take a long time and luckily we have a great Derm. At about 10 mo. he said that we should look at removing it, probably at age 3-5 (before school and the psychological stress of undergoing suergery). At almost 14 mo. we just had another follow up and he is recommending removal soon, as it is changing. I suggest that anyone with a child w/ this see a Dermotolgist, as it is something not all Peds and General Dr.'s are familiar with.
When my son was first diagnosed the NS was raised, no hair, pale, apricot colored...which was normal. The Derm measures it everytime we go in. The concern is when it changes color(red), texture and size...esp. if it grows any arms or spindles. Which, all of the above have happened. There was a time when it was bleeding from him scartching it. We make sure to trim his nails and apply Eucerin cream to it to keep it from drying out. He has also gotten a few pimple like marks on it. Luckily, my son is happy and healthy with no developemntal delays.But, we meet with the surgeon on 2/14 and he will make the final decision. More than likely the Derm said that he will agree with the recommendation due the changes and risk of malignency.
I am worried about the procedure for such a young toddler. But, I have faith that these surgeons do this everyday and know what they are doing. I am full of questions about recovery, risk of infection and I do not like to think too much about the procedure itself (cutting into the scalp and being put under). But, I do see the benefit that he won't remeber this and will be resilient. Also, it will reduce the chances of it transforming down the line.
At birth I had a giant cavernous hemangeoma on my right arm, it healed after a severe infection. Now I just have a scar on my arm that looks like I was burned...but I have gotten used to it and don't even notice it. But, it is my understanding that the vascular birthmarks are not associated with the follicle/epidermal ones?
If anyone has had a young child undergo surgery on the head for a NS I would appreciate any info. about the suregery and recovery. I am too anxious to wait a week when we meet with the surgeon.
Best of luck to all of you!
Bruno411

[Bruno411]

2/7/08
My son was diagnosed with a NS soon afte birth. It is in the shape of a heart on the back of his head(to us is good luck). At first the Derm. said that we would monitor it every 3-4 months and that it would be best to see what happens around puberty. Luckily my sister is a Dr. and stated her concern and encouragement to talk w/ the Dr. about seeing a Peds Derm at the local children's hosp. Well, that would take a long time and luckily we have a great Derm. At about 10 mo. he said that we should look at removing it, probably at age 3-5 (before school and the psychological stress of undergoing suergery). At almost 14 mo. we just had another follow up and he is recommending removal soon, as it is changing. I suggest that anyone with a child w/ this see a Dermotolgist, as it is something not all Peds and General Dr.'s are familiar with.
When my son was first diagnosed the NS was raised, no hair, pale, apricot colored...which was normal. The Derm measures it everytime we go in. The concern is when it changes color(red), texture and size...esp. if it grows any arms or spindles. Which, all of the above have happened. There was a time when it was bleeding from him scartching it. We make sure to trim his nails and apply Eucerin cream to it to keep it from drying out. He has also gotten a few pimple like marks on it. Luckily, my son is happy and healthy with no developemntal delays.But, we meet with the surgeon on 2/14 and he will make the final decision. More than likely the Derm said that he will agree with the recommendation due the changes and risk of malignency.
I am worried about the procedure for such a young toddler. But, I have faith that these surgeons do this everyday and know what they are doing. I am full of questions about recovery, risk of infection and I do not like to think too much about the procedure itself (cutting into the scalp and being put under). But, I do see the benefit that he won't remeber this and will be resilient. Also, it will reduce the chances of it transforming down the line.
At birth I had a giant cavernous hemangeoma on my right arm, it healed after a severe infection. Now I just have a scar on my arm that looks like I was burned...but I have gotten used to it and don't even notice it. But, it is my understanding that the vascular birthmarks are not associated with the follicle/epidermal ones?
If anyone has had a young child undergo surgery on the head for a NS I would appreciate any info. about the suregery and recovery. I am too anxious to wait a week when we meet with the surgeon.
Best of luck to all of you!
Bruno411

[Custard]

My son is now a month old and was born with a NS on his right cheek about 1.5 cm long. I have made an appointment to see a plastic surgeon to have it removed but the dermatolagist seems to think it may need a skin graft. I was hoping for minimal scaring and a skin graft seems a little dramatic.. Does anyone know if this will be the case?

[Liz7392]

My daughter had a NS removed from he head at 2.3 yrs of age. She just had a second surgery (3.5 yrs) because the surgeon didn't get it all the first time (odd shape that went down the side of her face and some of the cells were not visible to the nake eye; post-op biopsy found them).

She is doing great and I would do it agin in a heartbeat. Outpt surgery, covered by insurance.

My primary concern was finding an experienced surgeon and a good pediatric team. We traveled 4 hrs to the U of North Carolina Hospital. I couldn't have been more pleased.

Feel free to ask me anything you like about the NS and our choices.

Liz

[musclesjo]

When I was quite young my mom noticed a funny mark on my head she asked the ped. and she didn't seem to think it was any big deal. So life went on.
When I was 16 and went to the derm for acne. He asked if we had any other questions. My mom asked about the funny mark on my head. The derm. said it might be NS and wanted to biopsy it right then and there. Of course, that got my nerves going, more just because they were going to cut into my head, and I didn't have any time to prepare myself, then the actual NS itself. He called back later and said it was and that we should have it removed. So we made an apt after school one day and had it removed.
They had to shave around that area of my head and put thick vasoline-like stuff in my hair to hold it down and out of the way. They cut out an area that was about 3 inches long by about 2 inches wide, put 5 stiches in my head, wrapped it all up, and sent me on my way.
I went to school the next day wearing a hat to cover up the bandages & none of the teachers seemed to mind. The vasoline stuff didn't come out with regular shampoo, we even tried Dawn dish soap (cuts the grease!), but it didn't. So mom asked the pharmacist and he recommened this stuff called "Pssssst." It was a spray shampoo that you didn't need water to rinse out. It was for people who were bed ridden. It worked great!
The derm. called back a few days later and said that when the biopsed the edges of the area that they removed, that it appeared that they didn't get it all. He said just to watch it as the years went by and if I start to see anything again, they can remove it at that time.
I am now 24, I haven't see anything come in (except for hair!) in what I fondly call "my bald spot," which has gotten much smaller. The only time you can see it now is when I part my hair right through it. (Luckily I've always parted my hair on the other side!) It's really not that big of a deal, don't get too worked up or worried about it. I just check it every once in a while to make sure the only funny looking thing on my head is my bald spot (hopefully I won't find any grey hairs up there someday!) and I'm good!

[Asia301]

My dughter has a NS. Is there really anything to worry about. Her Derm. said just to keep an eye on it. But when i research it i find all this scary stuff about linear NS. What is the difference, and how do you know for sure which you have. Also someone mentioned that it is hereditary. We have never seen it in my family nor in my husbands family. Does it skip generations? What kind of questions are good to ask the doctors. My daughter is now 14 months. Is there any need to worry?

[ela16]

Hi Liz,
I'm glad your daughter is doing well!  My daughter is 18 months now.  She has a nevus on top of her head (round about 2 inches) and another one on the right side of her face going down her cheek (near ear).  I was wondering if you could email me any pictures of before and after of your daughter.  Can you tell me where you had the surgery done?  I'm researching hospitals right now.  I live in Maryland and the best around here is  Children's at John Hopkins.  We are thinking of doing the surgery after her second birthday.  Please let me know!
Thank you for your time.
ela16  

[Custard]

I researched all sorts of things on the internet too and scared myself to death but don't worry when I spoke to the derm he said there is only complications with the very large NS that cover most of the body, the small ones are just cosmetic. As for it being hereditary there's nothing in my family or my babies fathers but these things have to start somewhere don't they. You should speak to your Doctor though if you are worried about anything but I really don't think you need to worry. Hope this helps..

[CVStarr]

I am a 51 year old female who has a linear birthmark on my left forehead- I was always told it was just a birthmark, nothing more- until last year.  My dermatologist told me it was a NS for the first time & to seek a plastic surgeon for removal.  Through a stressful period in my life for the last 3 months, it is now hurting after no symptoms except fpr bleeding when I was a child.  Now it is sensitive to heat from my hairdryer, bleeds when touched by accident, itches occasionally and has a drawing feeling.... I am going to Johns Hopkins to get it removed, but am scared right now about the changes......

[chichimom]

Im also about to be 51 and just two years ago found out what this "bald spot" on my head was, NS , wow the doc wanted it off right then I said I have had it there for 50 years it must be fine, we could do the waite and see thing she agreed. Well now Im back in her office to show her some changes after 50 years. I think thats a great stretch. I never ever showed anyone my birthmark till two years ago, as you become an adult you get a bit shy about it. You parents out there with little one with this, do as your doctors say.... get it removed, one for the fact that it can become cancer (why would you even think twice) and  the other no one wants that on there body its not pretty!! It effects you,trust me Im a hairdresser and I have learned to get around it on my head but it effects how you do live.I will not be surprised if Im told that its cancer.I chose the "lets just see how it goes"  deal. I will be having it removed no matter what, as we all know the lets just see if it changes it stupid,lol

[megs44]

my daughter is 7 months old and has a nevous sebaceous mark on her forhead about a dime size. I am trying to find someone who has had one removed on their child. I can't find anything on the internet. I am worried about recovery and the scar. Anyone find any before/after pictures or info on recovery? Thanks!!

Megan

[Arlene29]

My baby girl is almost 8 months old, and I was just told today by a family doctor that the pinkish-peach spot on the crown of her head is NS and will need to be removed.  The spot has been there since birth, she also has a storkbite on the back of her neck ( and on her back above her butt?) so I just blew it off to that, and her regular pediatrician never said anything about it even though he has looked at it in the past.  It's about 1 in. wide and almost that long, after researching NS  I'm kind of worried, but I will have a Dermatologist check it out.  This family doctor also noticed that my baby has slight lazy eye which neither I or her pediatrician ever noticed.  Should I be looking for another pediatrician, the one I have is older and has a lot of experience, was he trying not to worry me or does he just miss things that other docs don't ???  I hope all of you on this board have success with your NS treatment & other cases/surgeries.
Arlene (mom of 3 in Virginia)

[novadust]

hello,

my son was born with a birthmark on the back of his head and we were told no hair would ever grow on it. we have recently been told by a plastic surgeon that it is a sebaceous nevus and should be removed as there is a risk of it changing into cancer or developing a tumour on it. the time frame of this is unknown so we are having it removed in a couple of weeks. jett is 8 years old and being teased at school because of it. now we know it is not just a cosmetic issue but also a health risk. i hate the thought of him going under anesthetic but i have absolute faith in the medical profession. love and light to you all ... x

[mandycamp]

i was wonderin how your babies surgery went on his nevi removal. right now we see a peds plastic surgern in columbia missouri. My son keeps having a reoccuring growth at the corner of his mouth and it is being removed for the second time in a week. If this does not go well i am going to look into that other doctor. So please let me know how it went and what it looks like. i would like to maybe see pictures too if there was any way we could do that.

[mandycamp]

Ped doctors dont always tell you everything, yeah so you dont worry but its crazy that he didnt tell you to see a derm cause you need to. Some NS are nothing to worry bout and some are very serious. No matter what if not delt with young it will cause probs later in life. You need to find you a good derm and they will hook you up with any other doctors you need to see if anything concerns them. My son has seen every kind of doctor that there is.  my sons right side of his face is a tiny bit smaller than the left and the only way you can tell is by looking at his eyes.

[cptcaveman]

Hello.  I would say anytime you or a child have a nevious sebacious that it be removed.  I myself had one but no one ever told me what it was..This year i went to a doctor to see what it was an I am 30.  They immediately scheduled me for surgery cause of the size of it and the discoloring it had formed.  It was 10cm X 14cm an this worried the doctors cause the average size is 8cm X 10cm.   After having it removed they did a pathology on it.  I got the results in about one week.  I will just say I am lucky... it did come back positive for skin cancer and a tumor but they where able to get it all removed an had just started to go a stem.  Now i have to wait 5-10 years to be considered cancer free and trying to find insurance outside of the work place is almost impossible cause of the cancer.. Do not hesitate or blow this off.  For as you see this can affect you in more then just health..

[Olivias_Mommy]

My daughter is almost 4 and has a NS on the left side of her head above her ear.  It's has grown since she was a a baby.  It is now about 1 inch wide and 2.5 inches long.  It used to bleed when she was baby and if she uses really creamy shampoos it will breakout with "zits"  We are going to a ped derm in 6 weeks to have it looked at.  She was being followed by an derm but the derm seems complacent and after reading up on it myself I feel like it should be removed.  The fact that it has grown worries me.  Has anyone had one grow at such a young age?  Does this mean anything?

[maillesmom]

My daughter was also born with a NV on her head. Nobody seemed to know what it was at first. She is now 20 months old. We have seen a ped. derm. in Jacksonville, Fla. and been referred to a surgeon . The surgeon wants to wait til she is about 3 for surgery. Her head will grow a good bit in the next year and should keep the scar from spreading any.

[mandycamp]

well its been something that i am wondering about. I talked to some one who has a son with autism and a nevus. Well i have two sons and my oldest has autism and my youngest has a nevus. I recently spoke with a lady from my sons autism class that has an older boy with autism and then a younger daughter with an epidermal nevus. What are the odds. Maybe there is some kind of genetic explanation for this. What are your thoughts or do you know anybody else with this in there family

[shalusdad]

Hi friends,

My daughter turns 4 in August and we have scheduled surgery for her NS birthmark here in California at the Lucille Packard Children's hospital for the 9th of June.

The surgeon and the pediatric dermatologist we consulted have assured us that this procedure is routine and the anaesthesia or the incision will not pose any danger and ofcourse, we are very worried about having our little one go through this at her age.

Any advice based on what you may have heard of or personally experienced regarding the NS surgery would be appreciated.

Thank you!

[guttentag]

My son had a nevus removed from his head when he was 5.  It was the size of a nickel.  The plastic surgeon said that the scar may strech out when he is much older, as his head gets bigger.  Well it stretched within a year, and the bald spot is now twice the size of the original "nickel size".  I feel really bad, because kids at school tell him he has a bald spot, which hurts his feelings.  I have no idea what to do, because hair will not grow there.  Has anyone dealt with this?  

[mandycamp]

my son has a very large nevus all the way across the back of his head. It has not been removed yet though i know that hair is never gonna grow there. lucky enough for us is that we can keep his hair longer to cover it up where it isnt noticed. Children are very cruel and im not looking forward to my little baby getting older and haveing to deal with this either. My sons nevi is extremely large and all of it cant even be removed. keep your head up and keep encouraging your boy that he is handsome and wonderful.

[mandycamp]

i have new pics of my son posted you guys should check them out and give me some kind of response

[moocer]

my son is 4 years old.  He has a NS on the side of his head about a dime size.  Today I noticed that instead of being flat and apricot colored it now looks like a mosquito bite and is raised to like a small pea.  Should I be concerned?  I know the pediatrician said it would need to be removed eventually because they can turn into cancer.  I just hope this doesn't mean it turned to cancer already.  

[mandycamp]

Just because it is changing doesnt mean that it has turned into cancer. my son has a very large NS on his face and the back of his head. He has had two growths already that have need to be removed because they were in a spot were it irratated him. They were non cancerous. Definitly get into see your ped derm to have it checked out. I hope this helps.

[HOPE021]

My daughter was born with a NS on the right side of her head. Like everyone else, we were told to have it removed before puberty. She was 2yrs old when it was removed. She is now 7 and is healthy as can be. She stayed with a bald spot with a her normal skin color to it.  I also have a 3yr old and a 1 yr old. My 3yr old does not have a NS, but last night I noticed a really small one on my 1yr old. I kinda freaked and started to cry, knowing that I would have to put him threw surgery broke my heart. I made him an appt with his pedi and wanna get this removed as soon as possible. I had never read as much about it as I did today. It scared me even more but know it's gonna be fine. All these stories have made me feel alot better. I wish everyone luck and God Bless!

[kaitlynsmommy]

My daughter was born with a NS on her neck right in the center of it. The docters say dont worry about it until she hits puberty. I even took her to a pediatric plastic surgeon in St. Louis and he said we could get it removed anytime but would probaly want to do it before she starts kindergarten. Well she is turning 4 next week and i'm getting scared just thinking about doing this. The kids in her preschool class already asks what it is and i think she is becoming more consious of it.  I'm glad to know that there are other parents out there concerned about this. I really had to do some searching about this because her doctor really wouldnt tell me much about it or why she was born with this.

[casey4383]

My daughter is one month old and has a NS on her forehead.  Her doc sent us to a ped plastic sur to see what he said. He has sch'd her to have it removed Oct 28th.  Has anyone heard about having a NS removed so young.  He says that at 3 months the risk for being put to sleep drops and never drops again.  I am relieved to be doing it when she is so young b/c she won't remember but want to know if anyone else had it done this young!

[kylernoahsmom]

My son has had his Seabceous Nevus since birth and we have had the same pediatrician for years but his nevus has been hurting, itching and bleding so we had the doc look at it and he freaked out he asked"have you showed me this before? " I said yes and you look in his ears at every visit how could you not see it? We always called it his birthmark  but now we are going to a surgeon to have it removed and biopsied and we hope it's not cancerous but from what I have found about it at St. Jude's website it doesnt look good. And it's funny to me that when you search AOL, Yahoo and other sites the first thing that pops up is Melanoma so those of you that have had your childs SN removed I hope you got it biopsied. I wish you all the best of luck. he is 10 the longer they have it the greater the risk of it turning into cancer.

[christinez48]

My son was born with nevus sebaceous on his head.  Nobody ever told us it could be removed until now, he is 15yrs old now.  He went to a dermatologist when he was younger and they said just keep an eye on the size and color.  We recently switched family doctors and he didn't like the looks of it at all, he wants it removed immediately.  We had it biopsied last week and are waiting for the results to come back.  My sons birthmark also itches and hurts to touch.  I didn't realize the seriousness of this condition until recently.  I have enjoyed reading all of your comments and I will let you know how his removal goes.

[FeathersOR]

My son was born with a NS and an hour after he was born the Pediatrician said that he would need to have it looked at when it started changing.  He is almost 11yo and I noticed it started changing about 3 months ago when puberty started to hit him (just the beginnings).  I did some reading on the internet and found that that is usually the time it will start to change.  I took him to a dermatologist yesterday and they are going to do a biopsy next week to confrim it, but they know that is what it is.  They need the biopsy to send him to a plastic surgeon.

Anywhoot...the derma doc said that they normally wait until the children are around 12-13 years old to remove them as they can sit quieter in the chair and be under a local instead of having to use general anesthesia.  But, that all plastic surgeons are different, so we'd have to wait and see what the one that we go to says. I have always thought the earlier you do things, the better??

I was reading on person's post here and it said something about autism and NS.  My son is Autistic.  His NS is about 3 inches tall and an inch wide.  It is on the side of his head in front and above his left ear. And it grows no hair.

I read another woman's blog that also has an autistic son the same age as mine and he also just had a NS removed.  

Good luck to all!

[nikkismom]

My daughter is 7 and she has ns on the top of her head . its about 3in long and maybe 1 an half wide . i didnt find out when she was a baby i was one of the ones that slipped through . they told me at first it the mark on her head was from internal monitors and then they told me it must have been a birth mark it wasnt until my daughter was about 3 yrs old that i changed doctors and during a regular check up she went to get her height that she said to me do you know what that is on her head . me being the person i am i sure its a birth mark .. she then told me how wrong i was pulled out books and stuff to read and told me to see a pediatric derm well it was hard to find one where we lived finally we found on at johns hopkins . he had told us to come back last year so we did and then he said that we should come back if it changes ? my daughters is like a mood spot sometimes its a nice skin color sometimes its red other times it looks as if it has a nice lil tan . it has already had a lil blood come out of it at time although i think that was from scratching . and it gets these lil bumps on it at times as well .. its kinda weird . nik is in the 3rd grade and every year i have the same meeting wth her teachers when they notice after her hair tie falls out .. what is that on her head . i guess the reason i even came here was because well all this time later i think its kinda cool that there is a board to post about it wish i had known that before and because im not sure what i should do . with all the mood changes hers has and now she has bad headachs i have set up an appt with her doc for tomarrow . not sure what to expect . deep down i thought they were goin to take this out last yr like they had stated an they didnt .. i kinda wish they would have .. im a wreck and she is at that age were shes getting teased at school .. kids can be so hard to one another .. i just wondered does anyone have a mood ns as my daughter does .. and if so do you know of kids getting these removed when they are around my daughters age . .

[jenk116]

My son is 14 months old and has a large sebaceous nevus on his scalp onto his face.  We saw a pediatric dermatologist and just saw a plastic surgeon who said to remove it by 2.  I don't really know what to do!  It looks fine now, but I know it can change and as people have said, children may make fun of it later one.  Even if we remove it, there will still be a scar and something kids will pick on.  If anyone has pictures or comments of after removal, please share!

[mandycamp]

My son is 2 years old and his nevus is very large and covers most of his cheeks, his neck and the back of his head. I have asked myself the same question many of times and have prayed about it and I have decided not to have his removed now. A have seen horrible scars and after effects of just having it removed because the parents dont want it there. My sons looks fine now he has had a couple of problem area and they were small and i had them removed by his is just to large and it would leave major scaring. i have decided not to remove it unless it causes problems later on and then only remove the problem areas. I think he is beautiful the way God made him and dont want to scar up his face unless i have to. You can look at my profile and i have tons of pics of noah on it.

[neo126]

I just found out that my 8 yo daughter has this NS.  What I thought was a birthmark has turned out to be something that may be linked to cancer. I have to say I am shocked, and mad at myself that I didn't have it looked at when she was 1.  I think that is when I noticed it.  It is slightly larger about 1 inch in length about 1/2 in wide.  It is on the left side of her head, its not exactly a complete bald spot.  She has an appt on Sat with derm.  I am not sure what they are going to do if its just a consult to confirm or if they will do something about it then??  Anyone know?

[Tiffagus]

My daughter is 8 months old and she was born with NS on her face.  Fortunately it is only dime size.  She is having a 2nd bronchoscopy for other reasons, and since she will already be under, they plan to remove the NS.  Our biggest concern is the possibility of nerve damage, although very low, due to the location of the NS.  The NS was looked at by her primary doctor, her ENT and then by a dermatologist.  She will have her surgery at Children's Hospital in Minneapolis on Tuesday, October 21st.

[Wendi1007]

My daughter has a Nevous Sebaceous on the top of her head. When she was born it looked like she had a dry spot on her scalp or maybe cradle cap about 1/2" in size. The symptoms started when she was 7, it became red in color, oozing, yellowish crusty stuff, and painful to the touch. We had a Dermatologist look at it and they did a biopsy. They said it was NS and came back benign, they gave us a steroid cream to heal it. It never went away but stopped oozing. They gave me a hand out and told me not to worry. With that we got a second Dermatologist to look at it and he said that because there was a hair follicle in it, that it was not NS. Now she is 10 years old and hormones are changing because of puberty. The spot is now 1.5" in length, red in color, oozing, yellowish crusty stuff, and very painful to the touch. Now we are on to the 3rd Dermatologist and they have concluded that this is defiantly NS and needs to be removed. We are now waiting for our appointment with the Plastic Surgeon that they referred us to. He will remove the NS and send to pathology to see if there are any cancerous cells within the area. Don’t wait- as soon as you can get this removed the better.

[Donco]

My daughter was born with a Subaceous nevus on her scalp approx 2cm by 1cm round. We had it removed with 3 operations, each removing a little bit, between the ages of 1 - 2 years.  At age 3 she was diagnosed with Autism, although she never quite fit the Autism title and many paediatricians and neurologists were not sure.  Recently i found another neurologist who believes her delays and behaviour are related to the nevus and stated that he has seen many children with a nevus who present with autistic like symptoms.  He explained that as a fetus the skin and brain develop first and although we cannot find anything on a MRI or EEG, something is probably wrong with her brain.  It does  not change the therapy we do with her, but it maybe explains why she is the way she is.

[LisaBug0626]

I have a daughter that has a NS on her head.  She is 10 yrs old.  We have always called it her bald spot and haven't been too concerned with it.  Recently my ex husband took her to a dermatologist to have it looked at. The doctor just suggested we keep a eye on it through puberty for any changes.

My concern is that she has been diagnosed with having had a stroke in utero and has a 6 mm. length difference in her legs.  All these problems are on the right side of her body... the same side as the NS.   What I am wondering is if this really could have anything to do with the NS?  I have just recently started doing a lot of research on NS and the syndrome and can't seem to shake the feeling that it is all related.

[itbehannah]

Well, i'm 13 and i have NS on my right temple. There are actually two, one arch that is 2.5cm and about a half inch back there is another glop right by my hairline that is 1.3x1.9cm. The first time we ever saw this was when i was in 4th grade, so about four years ago. I went to my family doctor and they have given me about 3 perscription creams that have done nothing at all. Well yesterday i went to a dermatologist and they told me that it was nevus sebaceous. When he told me that it would only go away by plastic surgery I was freaking out. I have another appointment in six months, from today. He said that for plastic surgery i would have to have skin grafts and it would leave a pretty big scar, A scar that a 13 year old girl wouldn't want on the side of her face. They don't get my point of view though, a scar is just as bad as this, and I am really scared that I will develop cancer from it.
Good luck to everyone else though, I hope everything goes good with you guys.

[lasi1227]

I am wondering if there is someone out there who has had experience in dealing with the bald spot left after removal.  My son had surgery to remove a nevus above his left ear.  A skin graft from his leg was used and he is now left with a bald spot about the size of his ear.  He is almost 13 now and is becoming very worried about the bald spot there.  He has to keep his hair quite long to cover it and gets picked on a lot about it.  So my question is, has anyone had experience with any type of surgery (tissue expander, hair transplant, etc.) that could fix or reduce the spot?  Just curious.  Thanks.

[Wendi1007]

My daughter had her NS removed since my last post in Oct. She has recovered well and they said she doesn't ever have to worry about this again. It did leave a bald spot on the very top of her head. The Doctor said that some of the hair may grow back up through the area. He also said as an alternative we could have the hair transplant/ plugs taken from the back of her head and place in that spot. We will see what it looks like in time, but at least it is gone.

[momofllh]

My son is almost 9 and has lots of nevus sebaceous - down his back, the front of his torso, on his neck, and some on his face. He has had a few surgeries to remove "pieces" as they bother him (itck, crack etc) However, we have left the rest alone. He may have a minor part of the "syndrome" associated with this disease - he has congential facial palsey on the left side of his face; most people think he has a crooked smile and find it endearing.  Let me  tell you how worried I was when he started Kindergarten...I was afraid this joyful, smart child would be left alone. How wrong I was!!! We live in an awesome community, have a GREAT network of friends and nobody treats him any different! He gets asked "whats on your neck?" When he was little he'd say "a shark bite" or "thats where I had surgery". Now that he is older, he explains to people that is a birthmark-a type of mole and that satisfies their curiosity. So, it may not be as bad as we all think. His moles have begun to change (he is pre-puberty) so we are revisiting the surgeon and going to have some more removed as a precaution. my fear is all of them will be changing at some point in time and we will be unable to remove them all. I'd love to share pics and stories : )

[giuffre63]

My son who is now 12 was born with a Nevus Sebacous on the back top part of his head.  It was the size of a quarter.  We had his removed when he was 5.  He did fine with the surgery.  The scar is like a 2 inch line across the crown of his head. Not that bad at all.  Sometimes he complanes of it hurting for like 7 second intervals like once every four months or so. He says when the pain comes it is only when he tenses his head.  I started keeping track of the frequency and when the pain comes. I figured it could be scar tissue.  Any suggestions?

[nonajo]

My story sounds very similar to some of yours. My son who is now 13 was born with a NS the size of a nickel and another right next to it the size of a pencil eraser on the left side of his scalp, near the crown. It was flat, pink, and shiny in appearance. I noticed it a few hours after he was born and was told that it was just a birthmark. We were not told that this was a NS. Over the years as a precaution, we always covered the area with sunscreen and baseball cap in the summer because it would always thicken and darken after sun exposure. When my son was 11, at puberty,  the area began to change. Still not knowing that this was NS, it began to grow up and branch out like a wart. The pediatrician in fact thought that it was a wart growing over the birthmark, and removed it via cryotherapy. He recommended that we follow up with a dermatologist if it returned because of the involvement with his birthmark. The growth did return but my son scratched it off by accident. Now he is 13, the area did again return, and we saw a Derm who for the first time told us that he suspected NS. He biopsied the area and in fact we got this dx after all these years. The Derm immediately referred us to a pediatric surgeon. We saw the surgeon last week and he is scheduled to have it removed in 3 weeks. The biopsy was done 3 weeks ago, and already the growth has returned. I advise everyone to take care of this sooner than later. If I had known that this was a NS, I would have had it removed years ago. Our Derm says these almost always begin to change at puberty, and there is a greater risk for skin cancer.

[Gamit450]

My son was born 3/10/09 with a NS on his right cheek approx. 1 inch long by 1/2 wide. At first in the hospital we were told it was a hemangianoma which we found out later it was not. We had to go to a specialist to get the answers we were looking for and were told that it is  benign and should be removed as early as possible to avoid any future issues. So we already scheduled it be removed at 6 months hopefully in one surgery but possibly 2 depending on it's size at 6 months. We were weary about the getting this surgery so early because our son will have to be put under for a half hour. The surgeon said there is nothing to worry about and this is done all the time,lets hope. I feel confident in the doctors decision mainly because it's the best childrens hospital in the country.

Childrens Hospital Of Philadelphia

[hellofrom66]

My son was born on March 30th, with 2 unknown birthmarks on his face and forehead/scalp.  The doctors first thought they were hemangiomas or possibly Sturge-Weber Syndrome, so we were referred to a nearby dermatologist who determined they were NS.  The one on his cheek near his ear is about 1inch by 3/4 inch.  The one on his forehead/scalp is very large (even according to the dermatologist) and is about 3 inches by 3/4 inches.  We have been referred to a ped. dermatologist at UCSF.  I don't know what will ultimately be recommended, but it appears that most doctors recommend the removal of the affected areas.  This really concerns me because of the extremely large area that the NS covers.  I'm worried about this, and hope that good news comes around once we see the specialist at UCSF.  

Does anyone else have experience with such large NS??

[rcatbunn]

Hi Mimmi! I am a 30 year old woman and I was born with a sebaceous nevous. I have asthma otherwise I'm very healthy. I have never had my sebaceous nevous removed, until last Friday. It never caused any problems for me. I hope this helps you feel a little better : )

[Fran1234]

I am a 33 year old woman, with a large nevus sebaceous on my left cheek and neck. I am a college graduate, and I'm starting a masters program in the fall. My parents nor pediatrician did not notice it during at birth but hey, I was born in the 70's. It only became  large and thick during puberty. I have no others problems. I did see a specialist during my early 20s who had no idea what it was and said live with it, unless I want to pay for removal out of pocket.  On a recent visit to a plastic surgeon for other issues, he notice the mark and asked me questions. So, I concerned myself lucky! Finally I’m having it removed in July and although I will have a new scare I’m looking for to having this one beening GONE! So don’t worry, it’s not the end of the world. Just have it cut off, and live life. :)

[mk5]

I remember being where so many of these posters are when our daughter was born nine years ago with an extensive case of sebaceous nevus covering her head and face.  There wasn't a whole lot of information on the web then and much of it was frightening.  However, our story has a good ending.  After 17 surgeries and 5 rounds of tissue expanders, our daughter has very little nevus left at this point.  We highly recommend Dr. Bruce Bauer in Chicago for an extensive case of nevus.  We saw specialists in Boston, Atlanta, and elsewhere, and many of them pointed us to Dr. Bauer.  He is an expert with expanders and also with ears (our daughter had nevus on both ears).  Two recent stories have been done on our daughter that might be helpful:

http://www.wgntv.com/news/medicalwatch/wgntv-nevus-surgery-sept02,0,5857324.story

http://www.kitsapsun.com/news/2009/aug/23/gig-harbor-happy-girl-nevus-life/

Good luck to everyone!  Even an extensive case can be addressed.  Our beautiful daughter is living proof!

[Karen110]

The just found a nevus on my son and it was thought to be a nevus. Please help as I am trying to find the best good plastic surgeon.
Karen
***@****

[gummie23]

My son, who is now 3 1/2 has a NS spot about the size of a nickel on the top of his head.  I've been told different things from different doctors.  One told us like many of you to keep an eye on it and it may change during puberty and likely then it would need to be removed.  But today, I had him at a plastic surgeon who said we should remove it soon.  He told us about 80% chance of it eventually turning malignant, and once it did, the incision would have to be larger around the NS and a  skin draft from the leg would have to fill the hole left.  But if it was removed now, before it is malignant, you could have a scar in the shape of a 1/2 wide line.  That sounds like the better option to me, but I wonder about what that scar will do as my son has alot of growing to do yet.   He is often itching it, and it does sometimes have little red spots during periods where he itches it alot.  Any thoughts?

[elfmate]

Can someone please tell me the NAME of the PROCEDURE or SURGERY that removes nevus sebaceous?