Nf1.... ?.... - Mothering Forums
Forum Jump: 
 
Thread Tools
#1 of 4 Old 12-23-2008, 02:17 AM - Thread Starter
 
StephandOwen's Avatar
 
Join Date: Jun 2004
Location: Kentucky
Posts: 8,809
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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)

StephandOwen is offline  
#2 of 4 Old 12-23-2008, 05:12 PM
 
kittynurse's Avatar
 
Join Date: Jun 2005
Location: with the rabid monkeys
Posts: 1,219
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

Martha
kittynurse is offline  
#3 of 4 Old 12-28-2008, 05:28 PM
 
CarolynnMarilynn's Avatar
 
Join Date: Jun 2004
Posts: 2,222
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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...
CarolynnMarilynn is offline  
#4 of 4 Old 12-29-2008, 04:25 AM
 
JohannasGarden's Avatar
 
Join Date: Mar 2005
Posts: 471
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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?

Sherri
JohannasGarden is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off