Nf1.... ?.... - Mothering Forums

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#1 of 4 Old 12-23-2008, 02:17 AM - Thread Starter
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DS may or may not have NF1. We're currently in the wait and see game. He has the cafe au lait spots, no freckles in armpits/groin, no Lisch nodules (checked yearly), leg x-ray is fine, MRI was fine a couple years ago, no optic glioma. He does have a slightly bigger than average head circumference.

Last week I noticed a bump on one of his fingers. It's clearish white and about the size of a small pea (a baby pea). It must have popped out of nowhere because I hadn't noticed it until last week. Is this a neurofibroma?

Should I just keep an eye on it? Should I take him to the dr? Neuro (he has one)? Genticist (he has one)? Dermatologist (never seen one yet)? Someone else?

Steph, DH Jason (1-1-11), DS Owen (10-3-03) and DS Kai (10-13-11)

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#2 of 4 Old 12-23-2008, 05:12 PM
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This might be out of left field but could it possibly be a wart? The hands are a really common place to get them. I used to get them on my fingers when I was a kid and they did seem just sort of appear but I think really they were there germinating and they would eventually be big enough to notice.

Regardless of what it is, I would probably see either his ped or a dermatologist. I had my warts treated by a derm. I don't know much about NF1 but it sounds like having a derm on board might not be a bad thing for the future.

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#3 of 4 Old 12-28-2008, 05:28 PM
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Hiya. It doesn't sound like a fibroma. My son has several and they are regular flesh-coloured, and feel like little peas under the skin - quite mobile.

Good luck!

gotta run... toddler ran away...
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#4 of 4 Old 12-29-2008, 04:25 AM
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That does sound more like a wart to me, too. My DS has had warts that sound just like that. I even showed them to his geneticist, and she did not even seem to be wondering if it could be a neurofibroma. If it were a possible one, she would definitely have been looking it over.

I'm going to throw something else out since I've been in the maybe it's NF1 boat. One thing I kind of figured out this year was that once you look out for certain things (especially if you have the full eye exam and an MRI), then a young kid with "possible NF1" gets pretty similar treatment to a kid dx'd with NF1 who hasn't had a glioma, brain tumor, seizures, troublesome plexi's, or bone problems. I used to looking for signs a lot, but my last appt. with his geneticist kind of set me at ease about not needing to do that. We'll still see the geneticist again, even though we don't even meet the cafe au lait criteria (his pedi. and I thought he had 6, but he doesn't) nor any others.

If he had one on his face or on the foot in a way that could interfere with walking, I would see the doctor for that, but we'd be more likely to consider treatment for warts in those areas, too, kwim?

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