Any Doctors on here who know about NF1 - Neurofibromatosis Type 1

[anxiousmum21]

When we got back from a recent abroad holiday DD (aged 2) had developed 2 cafe au lait spots. One on each arm. I mentioned it to the GP at the time who wasn't concerned but I've since heard about NF1. One of the symptoms of NF1 are freckles in the arm pits. DD has 2 moles under one arm pit and 1 mole under the other. They are definitely not freckles but I just wondered if the moles being there could be a symptom of NF1 or is it purely freckles which are a concern? Really grateful for any advice. I'm a worrier by nature and my minds going into overdrive a little. Thank you.

Bump

Hi I have NF1. There has to be 2 symptoms present to have a diagnosis. These include 5 or more café Au laits bigger than a pencil top, freckling in the armpits/ groin, plexiform

I have lots of cals, my ds started getting his from a very young age.

One of the other diagnostic criteria is a parent with it, we have a clear family history.

I don't have any particular issues. My mammograms start at 40 and I may at some point need some 'lumps' removed especially the one that is growing very close to my bra strap.

Thank you for your reply BrickByBrick. I really appreciate the info. Do you happen to know if the moles in her armpit could be linked or would it only be freckles that would be a symptom?

No family history that I'm aware of so hopefully that could be a good sign.

Hi, two of my children have NF1 and my understanding is that - generally - cafe au laits spots begin to appear shortly after birth.

Ive never heard of moles being connected to NF1.

Thank you for your replies. Hopefully it's nothing but it's hard not to worry when it's your children. Also, these conditions are often not as severe as lovely doctor google would have us believe. I really appreciate you taking the time to reply.

I don't think moles are - though some of my fibromas (lumps) do like like a mole - they are just getting bigger. DS is really freckly under his arm pits.

Nf1 can lead to major complications, but then people can also have very little complications.

Cafe-au-laits can just occur without it being nf - it is the number and size of them that is significant.

Take care

@anxiousmum21
How is your DD?