Cafe au lait birthmarks

[Dinkydonut1]

Does anyone else's LO have more than one cafe au lait birthmark, or just have some random tan pigment marks on their skin? My son was born with one brown birthmark and after a summer holiday last year I noticed another on his arm. He also has a bit of hyperpigmentation over his spine. He is almost 5 and his doctor isn't worried, but I tend to get quite anxious over these things. Can anyone chime in with a similar experience?

My ds (also 5) has a constant patch of freckles on the back of his neck, more a patch of darker skin now than freckles really. Dr isn't concerned.

My dd (2) has a cafe au lait (didn't realise the name before your post) mark next to her belly button too, pretty small though.

@Blessedbethefruitz thank you for your reply. I think generally they are pretty common, I just worry because my son has more than one. Apart from the one he was born with though, the other couple are very faint, I think the one from summer has pretty much faded, but will probably show up again once the sun comes out. Hopefully it's normal and I'm just being overly anxious!

2 cafe au lait marks for my LO (now 7yo)

I have a child with Neurofibromatosis, is this what you’re concerned about? If so, my understanding is there has to be many cafe au lait marks and over a certain size for it to indicate NF. My child has dozens. I have another child who does not have NF (They have been screened) and has maybe 2 or 3 cafe au lait marks so they can also just be very normal. I hope this puts your mind at ease a bit!

I am 32 and have lots, both mh sons also have lots!

Thank you all for sharing, it's helpful to hear others experiences. Dr google is the worst!!

My DS had some on his thighs. I had never taken any notice of them but after we went for his autism assessment and the genetic test results had come back positive, they asked to check for them.

I have 3, both my dc were born with 2, my dd has got 3 more now. I've never thought about them at all.

@marriednotdead do you mind me asking what their genetic test came back positive with? We’re just going through this process with my son now as he is also autistic and was born with an eye problem

@Dinkydonut1 It was an extra arm on one of his chromosomes- I don’t remember which one. They told me at the time it was related to autism. I’d have to dig for the paperwork as it’s 15 years ago.

Yes my daughter who is 7 has 2 on her chest which she was born with, never thought anything of them and then I heard of Neurofibromatosis and I checked her for more and found one under her armpit which is a telling place for Neurofibromatosis. Although I do have health anxiety too.. she seems perfectly healthy and I have spoken to a paediatrician about it who wasn’t concerned but I didn’t notice the one under her armpit at that time so I’m planning on taking her back but I also don’t want to keep taking her and give her a complex. It’s so tough.

@raffathegaffa just to try and ease your worries, I was told that under the armpits is only a marker for NF when they are freckles. It’s called axillary freckling. I had the same worry with my LO as one of his cals is right near his groin!

now you mention it, and I know you were trying to put my mind at ease but she does have two tiny freckles in her groin too which I forgot to mention! Anyway because it’s not a usual thing to take your child to the GP about and it’s probably not very well understood it’s hard to get anyone to take you seriously despite it being quite a ‘common’ underlying health condition- something like 1 in 6000 births I’ve read

Ahh, I see! Are they freckles like you’d get on your face, or are they the little dark pin prick ones? My son has a lot of the dark pin prick ones that are like moles but flat and teeny tiny x

@raffathegaffa i also have health anxiety, so I know exactly how you feel xx

DS has a few and was checked over for neurofibromatosis as he has another condition that increases the chances of having neurofibromatosis. The doctor went to get a second opinion but they came to the conclusion there weren’t enough to be worried about them. This did make me concerned but 7 years down the line there have been no other signs so the worry has faded. It’s hard to trust a doctor who breezily says all is fine after a cursory glance but it is probably their bread and butter and more invasive tests have their down sides!

My daughter has them though she's an adult now. Both her and DH have Neurofibromatosis.

Stay away from Dr Google!
a very experienced eye hospital nurse said this- Anyone can write anything on Google- and as she said “ Where are their medical degrees?”
A friend said that feeding garden peas to dogs is dangerous- “ Google if you dare”

Even the most innocuous thing can be deadly on Google.

Nope, they’re light brown in colour like freckles, very tiny. I’ll keep an eye on them anyway, she does have some other freckles elsewhere on her body though not just in the creases. I’ll just hope it’s coincidence and get it checked out 😂

@raffathegaffa my son has lots of freckles and moles too. He is very pale so I do often wonder if that's why. One of his cals only shows up in the summer when he's got a tan

@Dinkydonut1 my sister is soooo moley and she is really really pale.
im fair and not very moley but my partner is Greek and he has a lot of moles and a couple of small CAL’s. Our daughter is a mix of us both but definitely ‘dark’ compared to me. Our son is paler than our daughter but still dark features and she was paler as a baby than she is now so he might get darker. He doesn’t have any cals but he’s only nearly 1 so might not show yet, he does have a blue birth mark on his bottom though which looks like a bruise

My DD (now an adult) has lots of varying sizes, but they are the irregular, "splodge" like ones. They darken in the sun every summer.

When she was younger, she was assessed for NF at the specialist NF unit at Guy's hospital in London. They could find no evidence of NF other than these marks (no axillary freckles, no lisch nodules in her eyes). They said they were 99% sure she doesn't have NF and that it was probably one, or a combination of more than one, DNA mutation which relate to skin pigment, of which there are countless possibilities.

This was years ago, and she has never acquired any other NF symptoms.

@wineoohh yes, my son are also the irregular ones. Kind of looks like someone has spilled a cup of tea on him and it's stained his skin with slightly ragged edges. I did read about the more irregular ones being more likely just birthmarks, rather than the round ones!

Yes, that's exactly what they look like. And we were told that the irregularity makes NF much less likely. I remember the stress of that whole period though!

My daughters are also irregular, but she does have the two freckles in her groin and one CAL/large freckle just under her armpit 😩 if I was going to push for a proper assessment I wouldn’t know where to start or who to ask for - we live in Yorkshire and I think there’s a specialist NF clinic in Manchester could I ask for a referral there? She does also have a bump on her knee which I’ve been told multiple times is a wart but I worry it’s a neurofibroma! We used to live in London and we actually do still take her yearly to Guys & St Thomas’ for her food allergies. Can you go to your GP and ask for a referral to a specific clinic as I’d rather do that than just see a general paediatrician again who isn’t specialised in NF.