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Irregular skin darkening... not typical CAL

karan
0 Recommendations

My daughter has some irregular skin coloration... mostly a darker area containing some lighter spots on a leg near her knee. I would describe it as looking like it's just dirty skin... like she didn't wash the side of her leg well! But, my question is, could something that is a large irregular coloration- with variances in light and dark be considered a cafe au lait spot? Does anyone else have something like this description perhaps? Thanks for any feedback. We're seeing her doctor early November, and just wanted to ask before then!

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Pain Neurofibroma

8 replies

CindyLouWho

Karan,
My daughter does have a large area of diffuse hyperpigmentation across her back. Definitely not a CAL. It really looks like one side has tanned more than the other, sort of a dusky color. Sometimes an area of hyperpigmentation can overlay a plexiform tumor so that is certainly something to be aware of. My daughter's spot is not raised in any way nor does it appear there is anything there other than the discoloration.The current thinking is that this is either a beckers nevus or just hyperpigmentation. Diffuse hyperpigmentation can be seen in NF without tumor involvement as can hypopigmentation (white spots). I was also told that in our daughter's case it could be a sign of mosaic NF which would be in keeping with her other symptoms. For now we are just watching it and I do palpitate it occasionally to ensure that I'm not feeling anything of concern. When you press on your daughter's spot does she experience pain? Does it feel either squishy or like there are ridges underneathe? These would be signs of a plexiform. Of course, there could be many non NF causes for a change in pigment so hopefully you will get some reassurances at your upcoming app't.

Cindy

karan

Cindy-
Thank you so much for your post. I must say, I was delighted to see you responded, as I always appreciate your thorough and informative posts! You have given me some information to research and learn about! (Not to mention inquire about at our next doctor visit!) Thankfully, it does not appear to have any symptoms of a plexiform... it appears to be just the skin discoloration. One more question for you, are you familar with the sudden development of dark pigment spots... I suppose it is a small cal, but it recently appeared in I would have to guess the past couple of months. The only reason I bring it up, is that it is very close to the original dicoloration area I had been mentioning. Thanks!

CindyLouWho

Karan, It almost sounds like some kind of nevus but it could be so many things, NF related or not. Any time an NF child has something unusual appear it needs to be checked but I will be hoping you get some reassurances at that upcoming app't.

Please let me know.

Cindy

Stacey1988

I am 1 and I have an area of skin pigment on my chin just below my bottom lip. Mine also looks like I havent washed properly. I hve had this for as long as I can remember. I have no other issues with the area.
Just thought Id let you know, as your daughters pigment sounds the same
Stacey

pamelamarsden

I think what u r looking at is a plexyform. My youngest one has one on her leg. It looks similar to cafe spot but different at the same time, right? I took her to Childerens hospital and they dx it as a plexy form.

RDPS

Hello,

I dont know if this helps but my sis has been diagnosed with NF1 when she was younger. She has a big mark (size of medium potato) on back of her leg under her knee. For many years we have thought that that was a birth mark. She has a nother smaller one on her shoulder blade.
Anything esle I can help you with do not hesitate to contack me.

TeamKoda

Hi, Glad to have you as a new friend.

Our son was a spontaneous mutation as well; no family history. He has the darkening as well on his back......I actually tried washing, scrubbing etc it off; but now know it is the discoloration from a plexiform neurofibroma. He also has a large one running from his C2 down the left of his throat and into his chest cavity.......we would have never known if he wouldn't have had to have ear tubes, etc that made us end up doing an MRI. It engulfs his carotid artery......and now is starting to show as it grows. I pray that is not what you are getting ready to find out! Please keep us posted as I like to keep up with my NF families.

Yvonne

sueburke

My nephew had one and he also shows the freckling under the arms. The DNA test shows he does NOT have NF. We all thought ht did. The side of his body that looked tan finally went away when he was about 18. He shows all the marks of NF but tests shows he's not. His mother does not have NF, but me , my brother, 2 daughters . and my father have or had it.

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