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Cafe-au-lait birthmarks - I've scared myself on google :-(

12 replies

SpawnChorus · 17/09/2007 09:32

DS (13 months) has at least three (barely noticeable) cafe-au-lait birthmarks. They are approx 1-1.5 cms. I never google health things as it inevitably ends in panic and tears, but I thought these marks were entirely harmless and was curious to read about them Anyway, it transpires that having several of these marks can be an indicator of neurofibromatosis (a progressive genetic disease).

Does anyone else (or their DC) have several of these marks and a happy tale to tell?

OP posts:
tissy · 17/09/2007 09:39

To make a diagnosis of NF you need at least six cafe au lait patches.

Stop panicking!

SpawnChorus · 17/09/2007 12:02

OK...I'm trying not to worry, I really am

(DS does have two further small (less than 5mm) ones though )

OP posts:
TinyGang · 17/09/2007 12:10

My ds has one very small pale one on his back.

Fil's brothers children are affected by neurofibromatosis and mil was worried when we were having our children.

I asked the doctor (I'd never even heard of it before) and he checked but said that as fil wasn't affected it couldn't be passed on to our children.

I don't pretend to understand how it is passed on genetically - it all seems rather complicated - but I don't think it will affect us.

I think it's quite possible to have a cafe au lait birthmark and it be nothing to do with neurofibromatosis at all.

Ikwym about googling though. I did too and got myself worried. Googling health concerns is a bit of a double edged sword sometimes.

hippipotami · 17/09/2007 12:11

Like tissy said - you need at least 6 cafe au lait marks (and I believe some other traits too ?) before NF is even considered.

Ds has 1 very noticeable 3cm diameter patch, and one smaller, paler patch.
They are harmless, and nothing to worry about.

So relax!

LilRedWG · 17/09/2007 12:13

I did the same and scared myself silly when DD's birthmark 'appeared' at ten months. A quick trip to the GP put my mind at rest. She told me that it is a common concern and was worth checking out.

HTH a little.

Peachy · 17/09/2007 12:13

DS2 has a cafe au alit mark, dad has NF, there is no link as ds2 only ahs the one amrk- indeed they all do, but ds2 the largest- it was noted in DS3's notes as he ahs undiagnosed sn, but even then Paed only wants to know if mroe appear

Do Not Google these things!

LilRedWG · 17/09/2007 12:14

In fact, GP said it might be a fungal skin infection (whici horrified me) and to used Canisten for two weeks. If it went it was fungal and if it stayed it was a birthmark! It stayed!

Peachy · 17/09/2007 12:15

Oh and not all NF is the severe type- Dad has had a few ops to remove lumps (actually I had a nf lump removed but GP didnt do further tests) but thats about it, the are two types of NF, one of which is reallys evere

Elibean · 17/09/2007 13:01

My dd2 has one teeny cafe au lait mark - I worried too, a bit, because my BIL had NF.

However, he had several large ones, plus the mixed eye-colours, plus various other markers - and dh says there's no comparison. We did talk to a geneticist before having any kids at all, and apparently BIL's type was non-genetic - a one-off bad luck sort of thing, as there is no other history of it at all in dh's family on either side.

Spagblog · 17/09/2007 13:03

I have a huge one on my inner thigh and DS has three small ones on his groin area.

Don't worry. I think in cases of neurofibromatosis the amount of cafe au lait marks are much higher - 10 or so...

Pitchounette · 17/09/2007 13:07

Message withdrawn

SpawnChorus · 17/09/2007 21:25

Thanks everyone - it's helped (a bit!) to hear your rational advice and positive stories

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