Neurofibromatosis

[juliew]

I have 3 children aged 9, 7 and 5. My 5 year old daughter has a diagnosis of NF-1. No one on either side of mine or my husbands family have ever had NF that we are aware of. Here is my situation, bare with me it might be confusing.

I had never even heard of NF until my daughter was about 4 months old and started to develop cafe au laits all over her body. She now has more than 25 cafe au laits, auxiliary freckling and bright spots on her brain, so we have a definate diagnosis for her. So far, no complications.

My 7 year old son has a few cafe au laits but nothing else that would suggest that he also has NF; however he has been diagnosed with high functioning autism and has severe behavioral issues and slight speech issues. He has been expelled from 1st grade at his public school because of his behavior. We have been searching for answers for him since the time he was about 3 years old. He has had blood work done to test for fragile x, allergy testing, sleep deprived eeg, etc. He has not had an MRI because we decided against it due to financial limitations.

He has also been seen by numerous psychiatrist and specialist through out his life, who all have different opinions about what is going on with him but high functioning autism seems to be at the top of the list as far as everyone's opinion goes. I am still not sure that I completely agree with that opinion. If he has it, he is on the extreme high functioning side of it.

I have often wondered if he could also have NF but maybe it is just not as outwardly obvious as my daughters. I took him to see my daughter's neurologist with this question and he did not seem very interested. He examined my son and told us to just keep an eye out for anything unusual.

Call me crazy, but there are several things on my side of the family that make me wonder if there is any linkage that may have come from me. My mother has 1 cafe au lait. My sister has green eyes and has a brown spot in one of her eyes that has never caused her any problems and she has not had it checked out. My sister also went deaf in one ear when she was in her mid 30's for no apparent reason. My sister has a son with 3-4 cafe au laits who has behavioral issues as well. My brother has a son with several cafe au laits, who had a seizure when he was about 5 years old.

I am 37 and have 1 cafe au lait on my stomach. I don't have any signs of NF. About 6 weeks after having my first child, I started having pain in every every muscle and joint in my body and have been to see a neurologist myself who gave me a quick examination and told me that I have fibromyalgia. I thought it was a bunch of bunk but never pursued it any further because my pain is not debilitating, just aggrevating.

Seriously, I know this all sounds like a complete shot in the dark but if I don't pursue every avenue where my son is concerned I am afraid that one day down the road I may have missed something that might have been right under my nose the whole time. I want the best for all of my children.

Due to our financial limitations we do not have the luxury of having expensive testing, etc. for everyone in the family and I know that my daughter may have issues to arise as she gets older that may require expensive medical intervention. I am wondering if I should request an MRI for my son to make sure that there are no signs of anything affecting his brain.

I just want to make the right decisions. Does anyone have any suggestions? They would be greatly appreciated.