cafe o lait spots

[pokhara]

i just a quick question, a few times we have seen new medical professionals they notice ds has a light brown colouring on his neck and arm and go off subject and start looking over his body for more and ask a lotof questions about them, has this happened with anyone else and do you know why?

Hi POKHARA
Just to say yes my dd has about 4 of them pead did look for more of them.Apparently if they have more than 6 marks it means something,not quite sure what did google it when dd was born but she is 4.4 now and no one has said any more about it.
They also kept looking at dds back as she has a small patch of hair on it they do worry you dont they.
I shall watch this thread to see what other people say.

Both DS's have one and DS2 also has one of those areas of de-pigmentation which can also have some clinical significance, but only ever the HV has checked for more, each time when the boys were small. There are a few conditions which have these sort of marks as a sign, but they're looking for several rather than just one or two.

There are a couple of neurological conditions involving seizures which are linked to cafe au lait marks. Only know as when DS started with seizures and i started madly googling I came across it and of course spent days examining him

It can be a sign of neurofibramatosis (sp). But they are also very common, all my children have them.

Is your child mixed race/olive skinned/Asian?

i have 2 and my midle DS has 3 one of mine is very large on the back of my arm.

One of my children has lots. First picked up when he was about a year old and he was then monitored by geneticists. the thought was NF1.
I was the one that sought a referral - as he had quite a few and a couple that were quite large.

Apparently they tend to refer if a child under the age of 2 (i think) has more than a certain number and partic if they are bigger than a certain size (the end of a pencil). I had some other concerns about my ds and his development which is why I sought the referral.

ms ds has 2 about size of a 50p and has delays, might mention it when i next see paed

I think it was more than 6! My worries at the time were that my ds was late in walking and talking.
For a while he was just being monitored - we went for blood tests in the end to try and rule out NF1 and that showed a genetic change (although not NF1). It has ended up not meaning a great deal - other than that he has an incredibly rare syndrome that no-one else has ever heard of!
His biggest issue is a heart condition which we already knew about and is related to the syndrome.
Does your Ds already have paediatric input

yeah for poss asd, adhd and lang delay, but they havent mentioned genetics, so maybe its nothing but think might mention it anyway

My children are mixed race so they all have them. I always have a look for them when they are newborns.

No one has ever expressed concern. I am not worried either but what if they were significant? Have they been over looked due to my DC's ethnic background?

Just a thought.