Large Pale Birthmarks - NF1

[TigerBlueBear]

My 2nd son was diagnosed with Neurofibromatosis Type 1 (NF1) at 18 mths old.

We did not know he had this condition at birth although over the first year of his birth he developed a number of birthmarks ranging from quite small up to twice the size of a 50c piece and they got slightly darker as he got older.

I remember when he was born he had a couple of really pale ones, you could hardly see them. I noticed them but noone else seemed to including his Ped.

I was wondering if anyone else has a child with NF1 or with a number of large birth marks they are suspicious about.

[emily'smumma]

My daughter has Klippel-trenanunay Syndrome.

In her case, she has a prot wine stain to her entire right arm, breast, neck and sholder.

We are on the waiting lits for laser, but it is taking so long!

[Mikeswifey]

My DD was born with a strawberry on her face.

Noone else noticed either, only me, because it was tiny and pale. When I enquired I was told it was just a "birth trauma mark from the forceps"...Wrong.

It grew and grew and got darker and darker and I ended up taking her to a lazer therapist who looked through his special glasses and said he could see the veins rising to the skin from it and it was growing to the size of a 50 cent peice.

I had it lazered off about 3 sessions) and now its a tiny very pale pink mark, not noticable.

She had it tested and it was not a tumour of any sort.

I hope everything works out for your son. :hugs:

Emilymumma, when I rang I was told my DD would have to wait at the minimum of 9 months. I cried to them and kept ringing them saying it was growing and growing and the lazer therapist ended up letting us in. All I had to wait was a week. Otherwise I thought the waiting list was pathetic.

He had shown me work he had done on huge port wine stains on babies and I couldnt believe it. It went from dark red/purple to nothing, maybe just a faint pink area.