Logan has NF

jcthomas1281

All of the other specialist we have been to have said "nope, he looks good! No problems with his [kidneys, head, feet, etc]". So I was really hoping his genetics specialist would be the same. But she feels that he does have neurofibromatosis.  He got an echo cardiogram yesterday and will be seeing a neurologist in a few months and most likely be sedated for a MRI.  A lot of this is pretty much just to get baseline measurements and they will just monitor him periodically as he grows up.

This could mean nothing more than some cafe au lait spots, or he could develop tumors on his nerves and under his skin as he grows. Hopefully he will not have any delays or speech problems or any growths on his optic nerves.

I know there is no treatment or nothing we can really do other than just "watch and wait" but I just pray my son doesn't have to go through anything like the pictures I have seen online. I don't wish that on anyone.

And if I am a carrier, they said that may affect my decision to have more children in the future, which is depressing because I want a gazillion kids!

Anyways, I know a few people know about NF and y'all have been helpful and comforting so I appreciate it!

 

Ruby_Tuesday

I will say a little prayer for Logan.  I hope this means nothing in the long run.

sunnybrook.

I am so sorry you and Logan have to go through this. Hopefully his condition is very mild and will not cause any serious difficulties. I can't imagine how worried you must be. Sending hugs to you and prayers for Logan.