Cafe Au Lait Spots

• By proud_momma
• Reply 330438
• March 25, 2009 at 1:03 pm
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THE CAL SPOTS YOU KNOW ARE BROWN SOMETIMES THEY ARE BIG SOME ARE SMALL SOME ARE DARKER THAN OTHERS.MY LITTLE WAS BORN WITH ANY BIRTHMARKS OR CAL SPOTS THEN AT 3WEEKS SHE GOT A REALLY BIG CALSPOT FROM THE FRONT OF HER STOMACH ALL THE WAY AROUND TO HER BACK SHE HAS A BIG ONE ON THE SIDE OF HER NECK AND MANY MORE ALL OVER BODY.HER DOCTOR TOLD ME SHE HAD NF1.MOST OF THE TIME THATS HOW THEY KNOW PEOPLE HAVE NF BUT DONT LET THEM TELL YOU NOW THAT HE DONT HAVE IT BUT LATER DOWN THE ROAD THEY TELL YOU HE HAS IT.AT 18MONTHS MY DAUGHTER HAD A MRI AND THEY FOUND A BRAIN TUMOR AND ONE ON HER EYE.SO ASK THEM IF HE CAN GET A MRI WHAT THEY CANT SEE ON THEY OUTSIDE MIGHT BE ON THE INSIDE.DONT LET THEM PLAY WITH YOUR BABYS LIFE.NF AINT NO JOKE WHEN IT COMES TO TUMORS ON THE BRAIN THEY CANT DO NOTHING ABOUT. GOOD LUCK

• By Mtnguru
• Reply 330493
• March 25, 2009 at 1:51 pm
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yes they can be big or small, coffe colored, doctors say if you have 6 or more spots is a good indacator that you have NF

• By karan
• Reply 330659
• March 25, 2009 at 4:20 pm
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My daughter's spots were present either at birth, or very shortly afterward. We of course, thought they were just "birthmarks". The pediatrician noticed them, but said that they were small, and not large enough in number to be concerned about at the time, but he wanted to keep an eye on them. 7+ years later, her spots increased in number, and size, and are slightly darker now too... and she was diagnosed back in November '08. The spots are irregular in shape- anywhere on her torso, upper arm, and upper thigh, and are- as was mentioned- the color of creamed coffee being darker than the surrounding skin. Hers in particular range in size from irregular nickle size, down to smaller eraser size. Hope that helps. :-) Karan

• By SnazzySox
• Reply 330730
• March 25, 2009 at 5:35 pm
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Is there any way to post photos of what they look like? I have four pictures.

Thanks!

• By Mama4
• Reply 331459
• March 26, 2009 at 10:53 am
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I can't help you with the photos, but I would be interested in what you find out as well. My daughter has not been diagnosed yet with NF, but we go to a geneticist in May to find out. My daughter has one cafe au lait that is so light, that you can hardly see it. It is large and on her abdomin. I've been curious about it as well because one doctor says it looks like a cafe, but another doctor says it dosen't. It is so confusing. I hope you find some answers. The photos you see on the internet are so precise and don't really look like my daughter's. I can't see a definite border all the way around hers.

• By Blaster
• Reply 331648
• March 26, 2009 at 12:56 pm
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There is a disorder that is indicated by "Ragged Cals"

I Googled "ragged cafe au lait" ... here is a sample of what I found....

http://jnci.oxfordjournals.org/cgi/content/full/98/5/358

McCune-Albright syndrome
....http://www.springerlink.com/content/pveun519uhpj04mv/

• By Frenscisca (Inactive)
• Reply 331685
• March 26, 2009 at 1:29 pm
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Here a link with some pictures (dutch)

http://www.dermnet.com/thumbnailIndex.cfm?moduleID=11&moduleGroupID=275&gro upIndex=0&numcols=0

• By SnazzySox
• Reply 332760 · In reply to 331685 by Frenscisca
• March 27, 2009 at 11:58 am
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Hi,

Thank you for the links. I think his are more like the tiny ones in the first photo in the link provided by Frenscisca. Not the larger one, but the tiny ones. And his are smaller and very faint. My fear is that they will grow and get darker.

I took him to yet another dermatologist. This one I have known for years, unlike the pediatric dermatologist at the children's hospital. The latter dermatologist simply said "No, it's not NF." Which was surprising to me because she'd seen so many cases. At the same time, my husband feels that she should then be the one to be believed, since she has the experience. I don't know why I continue to worry.

But I did take him to see another dermatologist. She felt that ultimately it would amount to nothing, as well. She said she wasn't entirely comfortable saying it was nothing though, and would monitor him every three months. She did repeat what the other doctor had said, that there are people who just have cafe au lait marks. She said she has them too and her mother is a pediatrician and was worried about her too. She said though because she is a mother, she knows that she would want to know for sure.

So, that's that. We have an appointment with the second NF doctor in April. This one is Dr. Yeboa in NY. I don't know when to stop looking and when I can comfortably accept that he is okay. One very smart woman on this board said to give it six month and then revisit it. I had already made the appointment with the second NF specialist in NY, so I didn't want to give that appointment up and then wonder if I should have kept it.

• By Frenscisca (Inactive)
• Reply 333052
• March 27, 2009 at 4:31 pm
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Hello Snazzysox,

For NF1 you need 5 or more cafe aulait spots in a size that's bigger than 0,5 cm.
Here in the Netherlands we can go to a Geneticist.
They can look at your son's blood if there is something wrong with chromosom 17.

• By jess1bud1
• Reply 334659
• March 29, 2009 at 10:13 am
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It sounds like you are doing everything I did. Remember the internet is a very scary place. Usually the worst cases are reported and are the first to pop up in a google search. I have found my piece of mind knowing that a large majority of people live normal child/adult lives with no major complications. My son was born with a small number of CALs. Today, at 22 months he only has approx. 8 or 9 small light brown spots, most of which do not fit the diagnostic criteria. My gut told me not to trust exactly what I heard from the doctors and to be his advocate. It sounds like you are doing this. Maybe for the time being, since no other medical conditions are present, you continue to press forward and focus on things that could be overlooked, such as developmental delays. I believe all states offer Early Intervention from birth to 3 years of age. Children who have NF are also likely to develop learning disabilites and Early Intervention is well worth it.

• By ssirhc (Inactive)
• Reply 373309
• May 2, 2009 at 7:13 pm
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I know i'm late on this topic, but if you still haven't found any pics yet I have some of my son that were updated in feb of this year. everyone is different, just remember that.

hope it helps you a little. :o)

neurofibromatosis and tuberous sclerosis 2009

• By dawnjoennikki98
• Reply 376030 · In reply to 373309 by ssirhc
• May 5, 2009 at 1:00 pm
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Thanks for showing those pictures. What is Tubuler Sclerosis?(sp)

• By HisMom
• Reply 391244
• May 18, 2009 at 3:53 pm
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I was told by the geneticist I went to see that the CALs associated with NF1 also tend to be elliptical.