8 answers

Cafe Au Lait Spots on Children

Both of my children have cafe au lait spots on their bodies. My daughter has about 3 or 4 and my son has about 8. I was never concerned about them, as I too, have about five. I just thought they were birth marks. Well, today I took my daughter to the doctor and he noticed the one on her leg. He said that if she had more than five, then he would be concerned. I was so scared, I didn't mention how many my son had. I asked if it mattered what size they were and he said no, that if there are more than five, then there is concern. What????? I am now freaking out, thinking about my kids getting the disease, neurofibromatosis. I know, I know, I shouldn't have come home and researched it, but I did and now I can't focus or concentrate on anything! Do your children have these harmless looking spots? All of their spots are about the size of a pencil eraser, with the exception of the one on my daughter's leg, which is larger than a quarter. Help! Someone please give me some reassurance! This is a genetic disease and usually the parent has the disease as well or some other family member. No one we know has this disease or any issues.

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So What Happened?™

JUST SO YOU KNOW...We don't have health insurance, so I was reluctant to say anything to our doctor about my son, as I don't want anything put on his file until we have insurance. I will have to wait until we have insurance to go to the doctor, hopefully that will be soon.

More Answers

Don't freak out! My kids have them as well. My 3 year old was recently checked out at the Mayo clinic by a dermatologist for her birth marks at the urging of our pediatrician. I think pediatricians are quick to sound the alarm and send you to a specialist so they don't miss anything. The dermatologist said the only time they get concerned is if the spot is very large, like over 1/3 of their back. My husband has had skin cancer numerous times, including melanoma. The dermatologist said there is nothing to worry about with the kids. Just lather up the sunscreen. So, take a deep breath.

1 mom found this helpful

Why didn't you say anthing to your daughters doctor about your son's spots when he seemed concerned if there were more than 5? Has your son not seen a doctor? I would think that your son's doctor would have noticed them and said something to you if they were concerned. It is not always a good idea to go online and start "researching" about medical issues. A lot of the time the posts you read are from other people just like you and like people on this website giving their opinion or what they have experienced which may not be the same things you are experiencing. If you have concerns and you, your son and daughter all have these spots, GO TO A DOCTOR! Have the doctor give you their medical opinion. Get a second opinion if you aren't sure. There is a reason Doctors have to go to school for so long to become doctors, they get knowledge and experience that we don't.

Very likely if your children do have NF it may be the very mild form of it. One of the symptoms that are common are the Cafe Au Lait spots. I would get the child tested to be on the safe side. Here is a website about NF http://www.nfinc.org/. I would learn as much as I could about it.

My friend's daughter has the very mild form of this. Basically she has the spots, but nothing else. She hasn't had any trouble at all. Since it is genetic, they aren't quite sure who it is from. To my mind that is a good thing, since it probably will stay mild.

I watched a program about this on Discovery Health a few years back. So I don't remember all the details.

I would educate myself on it and not relay on the dr to tell me. Often they are distracted and don't tell the whole side. There are many reliable resources out there. There isn't a reason to panic until there is a firm possiblity of it being the severe form.

Also you may hear that NF is what a certain very disfigured person in England had. This is not true. He had a different diseace that is quite rare.

The best thing is to educate yourself and talk with parents of children who have NF.

Sounds like talking to your children's doctor would be the best place to start --that's what they are there for!

If you are worried, you should call your doctor and discuss your daughter and your son's Cafe Au Lait spots with him, instead of keeping quiet about them, freaking out at home or seeking advice online. It's the only way to get any answers that will be medically relevant or specific to your children.

I know nothing about this at all, but please talk to your childrens Dr about this. Keeping it to yourself & being afraid can only hurt your children. If it is something that needs to be dealt with, waiting may only make it worse.

My son has about 8 of those spots as well and he is only 2, I have ssen a genetics doctor for thoses spots he said that if they are larger than 8 in than there can be a concern, Plus the major key for them is they will do an eye exam and if they see it on the eye then it is more alarming. No it is normal for kids to have them My son has one on the side of his knee that when he was born it was as big as his knee and just keeps getting bigger with size. THey told me nothing to worry about unless more than one person in the family like you and your mom or dad have more than 8 and have signs of the NF1. I wouldnt worry so much just call a genetics goctor and get checked out the best thing you can do for your reasurrance. I went to one at St joes hospital Dr. Kirk.Hope this helps

D.
PS if you want to Email me to talk more about this you can my email is ____@____.com

My three year old son has 5 of them - I thought nothing of it either til my brother (who is a dr.) noticed them on one of his visits and pointedly asked, "how many does he have?" I said, I don't know 4 or 5. He said, "more than five?" I said I wasn't sure, hadn't really counted them. He stripped him down and counted them. He sounded very concerned if he had more than five. I would definitely get it checked out (without trying to get freaked out before you do!)

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