Well, my normal day today has turned into a nightmare! While standing in line at target, i notice my 6 yr old son had three gray hairs in his black afro (he is biracial). I get home and google and an association with NF came up. No family history, but half of the mutations are new.
I immediately worry because ds has had 2-3 cafe au lait spots on his torso since infancy. And after reading through the 'signs', noticed he has one freckle in his armpit.
I am filled with terror. I have prayed countless times already, have taken two ambien pills to try to fall asleep and can barely breath.
I am going to try to get appt tomorrow morning with ped. Please, if you could, send P&PT my way.
If you have had any experience with this, please share.
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11-19-2011 #1
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P&PT NEEDED: Anyone with neurofibromatosis experience with their children?
Last edited by Hippoharbor; 11-19-2011 at 12:22 PM.
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11-19-2011 #2
Pink Diamond level (15,000+ posts)
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Sending lots of P&PT your way. I don't have any experience with it or know much about it, but you sound anguished. I hope it all turns out to be absolutely normal and no cause for worry. If possible, try and avoid google based diagnosis - it's rarely accurate and always alarming. Get him to a great doc soon instead. Hugs.
for Sandy Hook
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11-19-2011 #3
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I am sorry you are so upset. Google can be your best friend AND your worst enemy!
Try not to worry if at all possible make a Dr. appt. asap so you can get some real answers.
I can tell you that my DD has a cafe au lait spot on her forehead and I freaked out when googling them back when she was younger. The Dr. said she is fine.
And my brother has gray patch of hair like Rasheed Wallace on the back of his head and he is totally fine too.DD
DS
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11-19-2011 #4
Emerald level (3000+ posts)
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No experience with this, but couldn't read your post and not send some virtual hugs your way. I looked up cafe a lait spots, because my daughter has one too, and read that its not a symptom unless they have six or more. Hope you are able to get some reassurance tomorrow from a doctor. Sounds like you are a very loving mama.
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11-19-2011 #5
Gold level (500+ posts)
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Have peds appt at 11:45.
I still am so nervous about this. I hope I can get some answers.
Thanks for reading.
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11-19-2011 #6
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good luck at your appointment! i hope you get some answers and it just a case of mommy worry for no reason *Hug*
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11-19-2011 #7
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Sending you hugs and prayers
Sarah
DS 5/26/05
DS 5/12/07 our angel
DD 4/8/08
Moralizing and morals are two entirely different things and are always found in entirely different people. Don Herold
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11-19-2011 #8
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Many many PTs for you and your little guy.
L, mommy to my one and only, super-sweet boy, G 6/08
I'm pro-big bird, and I vote.
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11-19-2011 #9
Gold level (500+ posts)
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My DD has several cafe-au-lait spots as well. So far she does not fit the criteria for testing. The are not big enough and she does not have enough. I still worry and I understand. Realize that most who are diagnosed with NF1 have a mild case and go on to live a normal life. I am like you though, and WORRY WORRY WORRY!!
Last edited by kerridean; 11-19-2011 at 02:29 PM.
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11-19-2011 #10
Ruby level (4000+ posts)
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Sending you lots of PT's. I hope you can find a way to stay calm until you can get to your doctor.
DD '06
DD '14
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