Cafe-au-lait Spots

Cafe-au-lait spots are a symptom for a constellation of genetic conditions. For the most part, they're harmless. I have a few, as does my daughter in almost the exact same places - and we both have Ectodermal Dysplasia.

It's just one of those odd things. I wouldn't worry until the doctors find something. It' doesn't actually mean there IS something wrong. Don't worry and try not to read too much into it. The spots are really a broad symptom - it would drive Dr. House nuts!

Don't worry about it. You'll just make yourself sick with worry.

Hi A.,

The spots are not necessarily anything to be worried about. The thing that I would say is that they could be a red flag that his immune system is not working at it's best. When the immune system works hard ALL the time, it is stressed and then it doesn't work well when needed There are ways to build the immune system that are simple and used to be just common practice a few years ago.

The things that I recommend is to remove the toxic chemicals from your home. Detoxing is simple and wasn't necessary 50 years ago when we only had one or two household cleaners. The other is remove the chemicals from your food. Processed foods and fast foods are full of synthetic chemicals that are added to preserve. They are also added to plants to help them grow faster and to keep the bugs away....Adding an absorbable multivitamin to his diet is good and I am a firm believer that principled chiropractic care keeps the immune system at it's best.

Most of us are not aware of all the things that fight against our health. Prevention is much simpler and less painful than dealing with an issue.

My two cents!

M.

Neurofibromatosis is so broad. My oldest son was born with many spots and he's now 8.5 and we finally seen a geneticist last year. He reviews his medicals and checked him out, and he felt that he did NOT have NF, but thought his symptoms were more in line with Legius Syndrome. Which used to be called 'NF-like syndrome'. My son also has Aspergers, which is common diagnosis with NF and Legius.

My point is ,take him in! Get him evaluated and checked out by a geneticist and rest your mind. I was freaked out when I learned when it could be, but after our appointments my mind is calmed. We have to be seen every 2yrs to do a current review of his skin, but otherwise he's been cleared.

My son has over 30 CALS on his body, some are smaller than a quarter, some are as big as his hand. They are all on his torso, back, and legs. He has one on each arm.

Get him seen by a Neuro and a geneticist to ease your mind.

PM me if you want. My son, now 1, started getting multiple CALS around a few months old. I am a PA, so it's on every board certification exam...and I was in a PANIC! By 5 months, he had over 10 of them...ranging from an inch or so, to around 5mm. I convinced myself he had NF or TS or something terrible. I took him to our peds who sent us to Hopkins, but we couldn't get in before my DH was supposed to deploy for a year, so through people I knew, we got into Children's hospital in DC for an eval by a genetics doc who is part of their NF clinic. You see, with NF, most symptoms or signs do not become apparent for many years. You can never tell how mild or severe a case may become, and 50% of the cases are new genetic mutations so neither parent needs to have it. Expecting the worst, we went to the appointment. I cannot tell you how reassured we were when the genetics doc told us that she "wasn't impressed"...that although he has quite a few spots that do fit the diagnosis in terms of size, that they didn't appear quite right...most were "too lacy" and not smooth bordered, etc. Maybe 3 or 4 out of 10 could actually be diagnostic on him. She felt that he was a perfectly healthy little guy with hyperpigmentation in spots. We will follow up with her over the summer to re-eval him...but as of now, he's perfectly normal. The reason I tell you all this, is that as a medical professional, the information I could find was almost 100% pointing toward a diagnosis with that many spots...and apparently that is not true. I asked the doc how she was so sure he didn't have it and her response was that she had seen thousands of kids/babies and just was able to see which ones progressed onto the diagnostic spectrum and which didn't. We still don't know for sure, but I feel much more confident now that he's a healthy little guy.
hope this helps. Oh...and STAY OFF THE INTERNET...you can scare yourself SH^$%^ LESS!

Sounds like they're being cautious, but depending on your son's age, the NF symptoms might not show up yet.

There are two types of this disease. If it affects his inner body he will develop tumors in the veins and organs but mostly look okay on the outside. If he has they type where it disfigures him he will have a long life and be productive.
My twelve year old niece has the first kind. If she lives to age 18 she can get a kidney transplant. I cannot tell you the heartbreak over her many hospitalization we have had.
If your son has the second type OHSU is the best absolutely the best place to take him in the NW.
Take him to the neurologist. The disease often is paired with any number of other conditions.
You must get into a support group. No parent can raise a child with without having one.
If your son develops the disease once he is in puberty his life will go well. Never let anyone make a false diagnosis of cancer with this disease it often happens.

My oldest has one. I read that it's not usually a sign of anything unless there are several, but they can be a sign of issues with the endocrine system. Even with just one, apparently it was with my son. He has growth hormone deficiency. It is treatable. Other than the drama of a nightly shot, the condition is not a big deal.