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Cafe au lait spots???

Posts: 664
10/2/08 1:50 P

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Hey ladies! I myself have NF (neurofibromatosis) and the pedi thinks ds might he has only 2 spots near his groin (one on each leg) that are about the size of a penny. He says we just need to watch it. But i myself have many spots a quite a few bumps. I am totally "normal". There is a specialist a few hours away that I have to see as well as my kids to make sure they dont have it or if they do that things are kept up on and looked at frequently. I have web sites and information if any of you are interested.

Posts: 12
9/18/08 2:27 P

Hi Everyone, I'm new to this discussion... my three month-old daughter has cafe au lait spots... she has about 8-10 large ones, 1/2 inch to 1 1/2 and many tiny ones... it has not yet been confirmed by a dermatologist that these cafe au lait spots are like the typical ones connected with Neurofibromatosis... I'm so scared... we see the dermatologist in early Dec and we see the opthamologist in mid Oct... for those of you who have spots or children with spots... has NF been completely ruled out? all the literature says that it can manifest anytime until puberty... if they only have spots past this time, then most likely they don't have the disease.... can you shed any light you your experiences? I too cried for days and I'm worried sick...what do your children's CALs look like and where are they located? oh, my husband and I are of different ethnic backgrounds... Portuguese and East Indian decent... are any of you in the same boat? I have many tiny ones, but nothing like my daughters. Any help or feedback will be appreciated.. Thanks!

Posts: 539
4/28/07 12:42 A

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What is the difference between these and what is termed a birthmark? I looked up a picture of 'cafe au lait spot' and I think my son has one really close to his butt on the back of his thigh. I have always had one on my hip and I think one on my leg somewhere too. My sister has a kind of larger one (like 3" long) on her thigh.


Baby girl due in October!

Tristan 9/28/06

Ticker is set for c-section date

Posts: 862
4/28/07 12:29 A

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2GIRLS4US's Photo
Thanks everyone! Neurofibromatosis is the condition my Pedi mentioned, but I couldn't remember the word. Sadie's are very small, she has one on her abdomin, one on her wrist, and a couple others. She also has a birth mark as well. They like little brush strokes or finger print type spots. The are also flat and some are very faint in color, but noticeable. I was told not to worry about it as well. I really appreciate the comments and input on this subject.

Take care,


Due 9/16/08
Sadie Aisling-born 8 days late on 10/02/06, 8lb5oz, 20.75in
Maeve Anna-4/27/04

Posts: 1735
4/27/07 7:40 P

i'm just wondering exactly what the spots look like. when do they show up.
james has a little spot on his head and it seems a few other little ones...they are very light though. i am not sure if they are birth marks...would they have been there since birth if they were birth marks? they haven't been

Posts: 419
4/27/07 4:08 P

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My daughter is 13 and she now has a total of 13 I think. The doctor wants us to get her tested to rule out stuff. They say that sometimes they can have problems with their vision and something to do with the nerves and spinal cord. He says the chance is rare.....but if were to find out anything...then it could help us prevent future problems. They jsut have to do a blood test I guess. I think we will be testing this fall sometime. My daughter is healthy and has no problems. The doctors just want to be sure about the future. kind of bothers me, but I would rather know now if there is something going on with her that we may need to deal with later.
Godo luck...

My family is now complete!!!!
Baby Sara Elizabeth joined our family on Aug. 30th. She was 38 weeks born via a c-section.
She weighed 9 pounds and was 21 inches long.

Ben--2/26/90 ~~ 9lbs 6 oz.
Brad--8/11/95~~ 8lbs 6 oz
Max--7/26/02~~ 8lbs 10oz

Posts: 6800
4/27/07 9:13 A

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Hey Jen - Taylor has these and no, they aren't the same as the Magnolian spots.

She has one on her lower back (they are all about 1/2 the size of a dime) she has one right below her knee, one on her inner thigh and 2 on her butt cheek.

This is what my doctor told me..
The spots *sometimes* could lead to nuerological problems - such as Neurofibromatosis, which is where tumors form on the nerves of the body.

NOW.. I know you're probably freaked out.. SO WAS I - BIG TIME!! I cried for days straight just thinking about this. But my doctor told me that you would know FROM BIRTH if your baby has NF. She would not starting coo-ing, smiling, sitting up, rolling over.. etc.. She wouldn't even acknowledge you.

The pedi said it's slim that these spots actually lead to this, but that she told us that she has to tell us the worst-case scenerios. Another thing to possibly look for is freckles in her armpits.

DD's pedi told us that her nephew has about 11 of spots and he's perfectly healthy.. that sometimes kids just have them and most of the time, they mean nothing and if it did mean anything.. you would absolutely know by now.

But anyway.. just wanted to give you some info. Didn't mean to freak you out.. I'm sorry if I did.. they don't mean anything and you would know by now if they did.

MM me if you want to know more!!


BabyFit Community Team

.*Taylor Lynn .*October 11, 2006

.*Baby Boy (scheduled c-section) May 20, 2011.

Posts: 273
4/27/07 6:48 A

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ALINA0013's Photo
Are these different than "Mongolian spots." My son has a few of those. They just look like large, very faint bruises. There is no harm to them, they are just worrisome when you first ever see them (when your babe is a newborn) because you wonder if he or she has been mishandled by the hospital staff! They are common in Asian and part-Asian kids and my son is 1/2 Filipino.

If that's what you are refering to, do not worry. But "cafe au lait" sounds different than what I'm describing.... Just thought I'd check.

Best of luck!

It's a boy! Due September 16, 2006.
Posts: 862
4/23/07 9:16 P

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2GIRLS4US's Photo
Just wondering if anyone has any experience with these on baby and what the deal is? I know if I ask my Pediatrician next time we are there, she will go into it, but she seems to not want to worry me about what too many mean....though she eluded to something the last time we noticed yet another one, but I was unable to pursue the convo as my lovely energetic gonna-be-three-on-Friday young Maeve was with me. Would love any information that anyone has. Sadie has 4 spots so far and I just thought they were a pigmentation thing.

Hope everyone is well! I am gonna try to read some and catch while I am on this evening. I so wish I had more time to check in, commiserate and swap info/advice more often!



Edited by: 2GIRLS4US at: 4/27/2007 (00:17)

Due 9/16/08
Sadie Aisling-born 8 days late on 10/02/06, 8lb5oz, 20.75in
Maeve Anna-4/27/04

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