Cafe au lait spots question...

Answers4N

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Cafe au lait spots question...

« on: April 15, 2012, 03:54:17 PM »

I was just wondering if there are any links between having cafe au lait spots and Thalassemia? I have one large spot on my arm and another medium one that appeared when I was about 18 years old. Our 14 mo old, that sees a geneticist tomorrow, has at least 6 spots that I have counted, including a tan area on his arm that goes from mid-lower-arm all the way down to his hand. Since I know that we both have at least thal-minor, I was curious if there was any connection here.

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Andy Battaglia

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Will thal rule you or will you rule thal?

Re: Cafe au lait spots question...

« Reply #1 on: April 15, 2012, 04:04:51 PM »

I do not know of any connection to thalassemia. Since you are seeing the geneticist, ask if testing for neurofibromatosis should be done.

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Andy

All we are saying is give thals a chance.

Answers4N

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Re: Cafe au lait spots question...

« Reply #2 on: April 17, 2012, 01:08:29 PM »

Hi Andy,

We met with the geneticist yesterday and discussed the spots with him, he mentioned the same condition you noted. For now we will watch him and see if anymore spots develop this summer, but will work to address the Thal issue/questions first. He also did not believe there is any connection between Thal and cafe au lait spots

It makes me feel a bit better, because our other two children have one or two of those spots, but we do not know if they are affected by Thal at this time (I just wanted to know if it was a marker/symptom of the condition).

Thank you for your reply,
Sarah

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alienware

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Re: Cafe au lait spots question...

« Reply #3 on: October 05, 2013, 04:51:34 PM »

cafe au lait is typically NF1 or NF2. Please get it checked out as I have a family member who is 14 years old with NF1 and working with clinical trials and many doctors due to neurofibroma wrapping around her artery.

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