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cafe au lait marks

(13 Posts)
helenhn Sat 20-Jan-07 23:22:14

My doctor has pointed out that DD, who's only 4 months old, has 4 cafe au lait marks on her, 3 on her side and 1 on her thigh. We've been told to keep an eye on them and that if more than 5 or 6 develop this could indicate neurofibromatosis. There's no history of this in either my or DH families. Do these marks often develop into neurofibromatosis. I'm really worried. Can she have cafe au lait marks and nothing develop beyond them being a birthmark? She seems perfectly fine and normal but I'm now constantly looking for signs of something being wrong with her. Anyone else with experience of this?

hester Sat 20-Jan-07 23:42:09

Sorry, Helen, I know nothing about this (other than having a cafe au lait mark myself) but thought this could do with a bump.

maddiemostmerry Sun 21-Jan-07 10:09:24

My ds has 3 cafe au lait spots, 2 on side and a large one on thigh. He is five and fine, no new ones have developed.

Go back to gp if worried, I have a look at ds every now and agian but at one point was also checking constantly for signs.

peegeeweegee Sun 21-Jan-07 23:31:15

My ds has two cafe au lait marks - one large one on his thigh and a smaller one on his neck.

No new ones have developed.

Don't worry, from what I have read, they are nothing more than harmless birthmarks, unless they are in a great number.

lulabelle Mon 22-Jan-07 10:19:36

Excuse my ignorance, I have never heard of these marks, what are they?

peegeeweegee Mon 22-Jan-07 10:26:02

they are large-ish (my ds's ones are just over 2.5" diameter) flat birthmarks the colour of milky coffee (hence the name cafe au lait marks)

lulabelle Mon 22-Jan-07 12:06:38

Reason I ask is, I have two of them, one on the back of my leg and one on my back, they are both about the size and shape of new potatoes, DS1 also has one on his leg and has little dots of the same colour in the same place as the one I have at the top of my leg. I have never heard them referred to as cafe au lait marks but I asked as no one has ever shown any concern over them, I know nothing about them, just thought that they were birth marks?

WigWamBam Mon 22-Jan-07 12:17:36

Dd has several. The GP mentioned them when she was about 2, but didn't say there were any other considerations with them.

Usually they are just birthmarks, but I googled and found this - it says that cafe-au-lait spots don't develop into neurofibromatosis, but can be a symptom of it. But only if there are more than 5 of them, they are more than 5mm in size, and there are other symptoms present as well.

I would go back to the GP and ask for a full explanation of the situation, and whether they are concerned that your dd may be at risk. It may just have been an observation, rather than an indication that the GP thinks there could be a problem.

lackofgravitas Mon 22-Jan-07 12:20:57

This is a useful page on the link between cafe au lait spots and neurofibromatosis

Before you read it and freak out though, it's worth pointing out that several paragraphs down it says:

"NF is often so mild that a parent isn't diagnosed until café-au-lait spots are found on his or her child."

lackofgravitas Mon 22-Jan-07 12:21:30

Argh, x-post.

helenhn Tue 23-Jan-07 23:02:34

Thanks for the links. I'm mainly worrying so much because dd is so young and has 4 cafe au lait marks already and I'm hoping that I never find that 5th or 6th mark. If dd only had 1 or 2 marks I don't think I'd be worrying as much. I think I'll go and see the doctor again and see if its worthwhile pursuing any tests as it is worrying me although no-one in our families have these marks.

psychologist Mon 27-Aug-07 20:16:21

Our only son was born with a brown birthmark on his nexk and running onto his chin. It was then a solid patch. After a worrying time, as it was quite big proportionally I asked gp for referral to dermatalogist. After a biopsy and a consultation doctor to doctor in Birmingham they diagnosed cafe au lait mark and hes now had 4 laser treatments at Bedford at a specialist clinic. Mark is now paler and more freckly mostly rather than solid. Very tough decision as its a general each time for a cosmetic thing . But hated thought of him being teased, although kids will tease about anything. Would only have considered given its size and location.Now hes nearly 4 and a very active, happy, bright little boy but it was very worrying soon after his birth and doctors and health visitors could be unhelpful although mostly our gps were good.

cocolepew Sat 01-Sep-07 12:52:34

My DD has NF1. if you are checking your child who has cafe au laits look at their armpits/groin area as there will be 'freckling' if it is NF1. Lots of people have these marks and it means nothing, as someone else has said there has to be a certain amount at a certain size for it to be NF.

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