NS (Nevus Sebaceous)

My 13 year old son with autism was recently diagnosed with NS.  I researched and found some alarming information about it.  I read that "this birthmark can be associated with other health problems, including birth defects affecting the eye, skeleton, heart and urgenital tract, which your doctor should examine for.  There is a very rare "nevus sebaceous of Jadassohn syndrome," consisting of a linear sebaceous nevus, seizures, and mental retardation.  For this reason it is generally recommended that children with sebaceous nevi have a neurological assessment."  

If you know of anyone with a child diagnosed with autism and has NS, please let me know.  Where there is there any connection with the two or mental retardation?  

We will be meeting with a pediatric surgeon for a consultation next week.

[mandycamp]

Crazy enough i have a 6 year old that has autism. but he does not have a nevus. But his younger brother was born with a very large nevus sebaceous on his head and face. I know thats not exactly what you were looking for but i am really looking for ppl to talk to bout my younger sons nevi or my older sons autism. my email id ***@****

[Brysonsdad]

Being that this is very rare it is hard to find any other parents in the same shoes. I do not know if my son has autism yet or not being that he is only 5 months old. He does have the NS and concerns me as well after reading the possible associated illnesses/symptoms. The dermatologist failed to mention any of this and just said that it was pretty much a skin thing that needed to be removed around puberty, but I don't want him running around with these warts on his head that could lead to other problems. Also the dermatologist didn't see it necessary to run any other tests however the sites I have visited say that neurological tests need to be run to rule out an developmental issues or brain defects.

Any ideas, don't know if you will even still get this being such and old posting but I figured I would give it a shot and see if you had learned anything else.

Thanks
Brandon

[Donco]

I have a 6 year old daughter with a subaceous nevus.  We had it removed when she was younger.  I was told that it was just a skin concern,had it removed and never thought about it again. It was difficult to get her diagnosed with autism because she was so different to most other kids with autism and as yet have never come across anyone like her.  She also has a bit of a squinty eye on the same side as the nevus.  Sometimes she holds and pushes around this eye, as if it is painful.  
we have had an MRI scan which showed nothing when she was2, I am planning on asking for another one just to double check.  I certainly believe the nevus is a sign or a red flag alerting us that something was wrong, but we had no idea early on.  I have tried lots of autism treatments such as diet, chelation, biomedics and therapy all with no success.  She attends an autism school which is helping at the moment.  I dont think we will ever really know what is wrong with.  I have seen paediatricians, metabolic specialists and neurologists and noone can explain her behaviours.  I dont know where to go next.  I dont think it is a coincidence that quite a few kids with a nevus on the scalp are diagnosed with autism.

[Annie_Jo]

Hi!  My 5 year old daughter actually does have the "nevus sebaceous of Jadassohn syndrome" that you mentioned, also known as linear nevus sebaceous syndrome (LNSS). Plus, she also has a diagnosis of autism!  It's a rare combination, but we're obviously not alone out here...

I think that maybe it's not so strange that nevi and autism can go together -- from my information gathering (I'm a university librarian!), my understanding is that it's generally thought to be genetic.  There's a whole group of so-called "neurocutaneous disorders" that involve both skin conditions and brain/central-nervous-system conditions, which makes sense because in fetal development, the brain and skin originate from the same structure.

If anyone wants to be in touch about this, I'm working on a web site and support group for LNSS and other related syndromes, and would love to get more people together to share support & info!

[Annie_Jo]

P.S.  I should give the web site... it's called LNSS Connections and the address is:

http://www.lnss-connections.org/

The support group with the same name is at:

http://health.groups.yahoo.com/group/LNSS-Connections/