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Mom Confessions Mom Confessions

If this was your DD...what would you do? **ETA

Posted by on Jul. 28, 2014 at 4:25 PM
  • 144 Replies
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I'll make this as short as I can. My DD is 3 years old (almost 4). She has these spots on her body that have popped up throughout her life. May or may not be Cafe au lait marks.

She has a very large one on her neck & shoulder. I pointed this out to her new pediatrician, and he referred me to a dermatologist to check out possibility of it being Neurofibromatosis (NF). NF is a genetic disease that can cause tumors to grow on nerve tissue. That dermatologist spent about a minute and a half with us, barely asked any questions and just said to come back in a year. So I found another dermatologist and took her there instead.

That dermatologist said she suspected it was NF, but she couldn't be sure without a genetic test or a biopsy because it could be a number of things. She said she doesn't typically like to do skin biopsies on young kids, but said it was my choice. So I tried to get a referral for genetic testing with no luck. Her pedi referred me to a genetic counselor. We went, genetic counselor said she doesn't think it's NF.

So the questions still remain. Is it or is it not NF? If it's not, what is it? Is it threatening? Benign? Maybe it's nothing, I have no idea. I mean, she seems fine unless there's something going on internally we don't know about.

Anyway my question for you ladies is this...if this was your daughter would you go ahead with the biopsy? Or would you just leave it alone? Her dermatologist said it would require stitches. She has an appointment to get it done in mid August, but I'm just so torn. My 1 year old son has a small light spot on his back now, and of course now I'm paranoid. DH and I wanted a 3rd child, but if one of us is a carrier for some disease I'd like to know about it. I just don't know.

**Thank you guys for all your opinions! I think that I've decided to take her to her dermatologist appointment in August. I'll be asking more questions while we're there, and some that were suggested here, before I give the go ahead on the biopsy for that day. I wasn't very familiar with the procedure and many of you have calmed my nerves. Thank you! Some of you have asked for pictures, and I don't mind, so here they are. My daughter and one of a few of her spots.
by on Jul. 28, 2014 at 4:25 PM
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Replies (1-10):
Anonymous
by Anonymous 1 on Jul. 28, 2014 at 4:28 PM
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I'd get the test done. My dh has a 13 year old cousin with NF.
tattedmommy730
by Gold Member on Jul. 28, 2014 at 4:29 PM
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If she keeps getting more its concerning. My son has two, one on his foot and another on his tummy, but he hasnt gotten more
tattedmommy730
by Gold Member on Jul. 28, 2014 at 4:29 PM
1 mom liked this
If she keeps getting more its concerning. My son has two, one on his foot and another on his tummy, but he hasnt gotten more
Mena929
by Gold Member on Jul. 28, 2014 at 4:30 PM
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I would get the test done.

Anonymous
by Anonymous 2 on Jul. 28, 2014 at 4:31 PM
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What will knowing the results do?

Sally-Diane
by Bronze Member on Jul. 28, 2014 at 4:32 PM
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I would have it done. I think it will be harder for you to watch than for her to have it done.
AvantGardener
by Song Bird on Jul. 28, 2014 at 4:33 PM
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I would find a doctor I trusted and try to get as much info as possible. Many things with kids are "wait and see" types of things. It's hard, trust me I know. I had to wait a year once to see if my son had cancer. But I trusted our hematologist that the treatment didn't depend on the testing. What is the treatment if it comes out positive? I think I would have many more questions to ask before agreeing to a biopsy.

Anonymous
by Anonymous 3 on Jul. 28, 2014 at 4:35 PM
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I would do the biopsy, personally.  That way there is no question as to what is going on.

Tigress22304
by on Jul. 28, 2014 at 4:35 PM
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With my DD,we did get the testing done.

I think it's important to know.

Elegy
by Bronze Member on Jul. 28, 2014 at 4:36 PM
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I don't know enough about that condition to make a hypothetical decision. If you get the biopsy and she does have NF, what then? If she doesn't, what then? 

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