6 month apt. yesterday

Sometimes I hate the damn internet.

So I went yesterday for the babies 6 month apt. While in the office and Jocelyn was down to her diaper, I notice a light brown “spot” on her rib cage…never ever seen it before and I bathe her at least 1 to 2x per week. I pointed it out the Dr. and she told me that she never noticed it before and it could be something or nothing. She mentioned something called a café au late spot (because it looks like a coffee stain) which again, can be something or nothing. She said that 1 or a pair isn’t a big deal, it’s when you have like multiples (5 or more) than it could be ‘an issue’. She warned me not to look it up, but I did. Good God…it’s similar to what the Elephant Man had!! Multiple spots are closely related to a genetic disorder called Neurofibromatosis which is tumors around the nerves. The pictures are nasty and make me want to cry. There is no cure for it. It’s bad.

I never noticed this before. I have hard time believing a birth mark can develop so late in the game (after 6 months??). It’s oval in shape, irregular edges and is about 3” at the longest part and about 1” at the widest part.

Anyone else experience the development of a birthmark later?

How could I possibly ignore what I’ve seen and read? I’m freaking out!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Please talk me down. Does anyone else have any of this spots? Anyone else every “develop a birthmark” well after birth.

http://thrivingwithnf.com/whatisNF.htm (pictures are not for the faint at heart)

Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.

 

I need to post a picture of one of my girl's birthmark. It appeared about a year ago, she was about 14 months old (I think?) when we noticed it. The first time anyone noticed it was her swim teacher at ISR lessons, and she took lessons last March. She did not have any birthmarks at birth.

It sounds like the same thing you are describing. She's not developed any other marks, only the one. We did think it was a little odd that it showed up when she was over the age of 1, but the doctor said just to keep an eye on it. It hasn't changed appearance since it showed up. It's about the size of a penny, round but with irregular shaped edges. I will get my camera and post a picture.

ETA: I'm going to PM you a link to some pictures

 

:hug: google is not your friend.
if you are worried can you bring them to a dermatologist or someone else? what did the doctor say was the next step?

 

I have two cafe au lait spots - I don't know how long I have had them for (since birth? since I was two years old?) but they have been there for as long as I personally can remember.
I also did my graduate thesis on conditions such as neurofibromatosis - do NOT panic! Cafe au lait spots are just one of the "ingredients" needed to make a diagnosis but lots of people have these spots and do not have NF. Plus the internet displays the most sensational cases of conditions. I have met many children with NF and the extent of their illness is nowhere near to what you see on the internet - so...worse case scenario - if your child has NF (and the chances are slim) - it is not what you see on the internet.

 

Hi, My son developed two of these by 6 months (not present at birth). One on his wrist and one on his ankle. I asked the pedi about it and she wasn't worried. She said it's extra skin pigmentation. There haven't been any changes and it's been a year since they appeared.

Thanks for the warning...I'm staying away from the link!

 

Although I can't relate to your situation, I just want to add that I agree 100% with "newtothis" about Google not being your friend. When my girls had their 9mo check-up, their pedi seemed to think that both babies had enlarged livers. I came home and researched it on the internet and boy was that the worst thing I could have EVER done...EVER!!! The internet covers such a broad range of side effects and symptoms of just about anything that a Dr diagnoses and reading it only gets you more and more stressed about the situation. What is the next step your pedi wants to take?

 

My oldest son has about 5 of the cafe au lait spots. They did not turn into anything else, just skin pigmentation changes. Like a pp said, the spots are just one small piece to the larger puzzle that can cause issues. I'm sure it will all turn out to be fine!

Laura

 

First of all, Google is not your friend!! Several of my kids have those lightish brown birth marks & none of them were there at birth, they all appeared later. But I know how you feel with the worrying, Tess has a very rare birthmark on the side of her head that can be associated with a syndrome (I think it's like 60% of cases) that causes severe seizures & really severe developmental disabilities. It totally freaked me out, too. But, you know, she just has the birthmark & nothing else. Most likely it's nothing. Stay away from Google, it will not make you feel better. The good cases where the birthmark is just a birthmark, don't get reported much on Google! :hug:

 

:hug: i have a cafe au lait spot on my leg and never developed beyond being a darker patch of skin! Try not to panic and I agree that google is NOT a good thing!! :hug:

 

First, i wouldn't stress yet. Until others start popping up... don't stress. I actually have 3 siblings with this... they are all from a different mom... and they all lead very normal lives with NF. Yes, there are issues with the condition but there are many people who live with this everyday that you wouldn't have the slightest clue they have it. Just thought i would put my two cents in since i know you were stressed about that. But if there are more spots that pop up or anything else that pops up, then i would just ask for a specialist and possibly some bloodwork to rule it out. Good luck.

 

I've had a small one on my hand. I remember noticing it as a child, but I don't know if it was there from birth or not. Never had an issue with it. My niece has one on her arm. It's just a skin thing in her case too. Don't stress out!

 

Stay away from the google.

My DD Amy was born with a large cafe au lait spot on her leg (about 1/3 the length of her calf) and has developed a couple of other similar moles since birth. We had a dermatologist look at the big one after her 4th b'day and the derm said absolutely do not worry.

 

Just another adding that DS developed a birthmark months after birth. I'm a bad mommy :FIFblush: and can't tell you exactly when it first appeared. However it was somewhere between 6-8 months. It is on his chest and is just a little brown mark. I've never googled it, but thought I'd tell you that we had a late birth mark developer as well.

 

Thank you everyone for talking me down from a panic.

Google is not my friend

 

None of my kids were born with birthmarks. Jocelyn did have a stork bite and angel kisses, but those were all gone by under two years old. Eve developed a hemangioma a couple of weeks after birth. Owen didn't have any birthmarks until he was close to two, I think? I didn't notice mine until I was in 4th grade--still remember when it happened, too. For a few months I thought I had some sort of dirt on my leg, then it got a bit darker, then darker...now it's a birthmark.

My point is, birthmarks don't always show up at birth, oddly enough. I really don't know anything at all about NF, but I'm sure Jocelyn is just fine if no other symptoms are evident. Try to relax and follow the advice of the pps--stay away from Google! :hug:

 

I have one the size of a pencil eraser in the middle of my forehead. Both girls have simalar spots on their bodies.

 

Ian has a few of those spots on his trunk and our pedi never mentioned anything about them either

 

I am a dermatologist and want to reassure you that it is probably just a birthmark, nothing else. There are several criteria for NF and most people with cafe au lait spots do not have NF.