Never thought I'd post here. I think I'd feel better if it were under "Health and Healing"... But here we are...
The signs are pointing toward NF1 for my 5yo ds. He had cafe au lait spots on his butt and thighs at birth (but less than six like the diagnoses seem to always say) and since the age of 18 mos has been getting tiny flesh-colored "moles" on his face. They just keep popping up. He must have almost two dozen now. And my mom said to me yesterday, "What *are* those things on his face?"
From a normal distance you cannot tell. But up close they are obvious. It seems that I keep noticing new ones.
He is normal in development otherwise, no learning disabilities, so we are grateful, of course, for his vitality and health.
I feel bad coming on this board to talk about this because I have read some of yours' posts on your struggles with much more serious problems and much more severe cases of neurofibromatosis. At this point it is merely a cosmetic nuisance. But it could potentially just keep getting worse and worse, maybe not until he is 10, 15, 20, 30, 50... who knows? The sinister thing about this disorder is that there is no way to predict how bad it could be and of course the thought of one's child progressively becoming more and more covered in growths is heart-wrenching. I suppose if he can just make it through childhood without them getting out of control I will be grateful.
I think that this could teach our family a lot about what it means to be grateful for each day.
The signs are pointing toward NF1 for my 5yo ds. He had cafe au lait spots on his butt and thighs at birth (but less than six like the diagnoses seem to always say) and since the age of 18 mos has been getting tiny flesh-colored "moles" on his face. They just keep popping up. He must have almost two dozen now. And my mom said to me yesterday, "What *are* those things on his face?"
From a normal distance you cannot tell. But up close they are obvious. It seems that I keep noticing new ones.
He is normal in development otherwise, no learning disabilities, so we are grateful, of course, for his vitality and health.
I feel bad coming on this board to talk about this because I have read some of yours' posts on your struggles with much more serious problems and much more severe cases of neurofibromatosis. At this point it is merely a cosmetic nuisance. But it could potentially just keep getting worse and worse, maybe not until he is 10, 15, 20, 30, 50... who knows? The sinister thing about this disorder is that there is no way to predict how bad it could be and of course the thought of one's child progressively becoming more and more covered in growths is heart-wrenching. I suppose if he can just make it through childhood without them getting out of control I will be grateful.
I think that this could teach our family a lot about what it means to be grateful for each day.
