I did not know what Neurofibromatosis Type 1 is until I Googled something…
The night before last, I voiced my concerns to my other half about Master A. I noticed that he had then four brown marks on his body..they are small but certainly about half a centimetre each..one a bit bigger. My other half agreed that it is something to see the GP about.
I wasn’t overly worried about them before, not until I noticed he was getting one on his face. Wasn’t particularly happy about that but still, could be worse. I then was googling something about my own skin and a picture of what looked like his marks popped up in Google images. It was telling me they could be cafe au lait marks.
Cafe au lait marks are the main symptom of Neurofibromatosis Type 1 (NF1). See the NHS website for more info. I have since spotted two more, one on his groin and another on his thigh.
What with Master A’s speech delay, another symptom is learning difficulties, I am rather concerned. So yesterday I took him to the doctors. She wasn’t overly concerned but she then told me that they look like freckles/birth marks..what are cafe au lait marks? That! So I voiced my concerns and she agreed to refer me to the paediatrician even though she still wasn’t overly concerned.
I now have to wait about a month to see the paediatrician. I am happy to say that it isn’t usually life threatening just something that the poor boy has to deal with for the rest of his life.
So I am putting this here on my blog to first of all find out what other people think it could be. Is there any other explanation as to why Master A is getting these spots?
I am also keen on finding out whether any of you have had experience of this condition as I am the kind of person to know exactly what’s involved and what to do. Even if Master A doesn’t have this condition, perhaps it will help others.
Thanks all. I won’t say roll on a month’s time as it is the Summer holiday and I am making sure my two little ones have fun!
Here are some photos..