Friday, January 27, 2006

Getting More Information

Not every post title will have some form of "get" in it, but I've got (heh) a few more of these titles in me before I give up. Before I move on to the actual topic of the post, can I just say how exciting it was to see I had a comment already? Wow. Very cool.

Anyway. When we took our son to see a neurologist at six months, she made a little throwaway comment along the lines of, "Yes, it's a lot of fun to Google 'large head,' isn't it?" Yeah. It's just great. But who can resist the temptation of Dr. Google? So, at yesterday's appointment, the new neurologist -- we moved to a new state -- said he thinks our son has a particular syndrome. He fits many of the physical characteristics of this syndrome. He sent us to do a $1500 blood test that takes 4 to 6 weeks to give results, but it should give a definitive answer, according to him. According to Dr. Google, we'll also need an x-ray, and the neurologist also scheduled us for an MRI of our son's brain. So after the very expensive blood draw, we left the hospital, and by the time I got off the phone with my parents, my husband had already pulled up pages and pages of information on his Blackberry.

It's funny. I've read these pages several times, and each time, I come away with something different. And I keep googling and googling and looking for those answers that no one can really give. That whole, "So what's he gonna be like when he's 18?" What did I get? And what Meow, my commenter, said is right, I can't dwell on what my son can't or might not be able to do. I have to focus on what he can do, what he is doing, and who he is oustide of this potential diagnosis. But still....

It's the roller coaster that gets to me. I mean, really, we're planning on putting our son in preschool in the fall, maybe even some sort of summer camp program to get him used to the routine. And now, in a sense, all of that is called into question. How much information do I give his teachers? Do I tell them everything so that they make allowances for him? Or do I tell them very little so that they treat him just like all the other kids? What's best? And when will I stop second guessing myself?


Tame said...

Hello. I think my 2 year old has Sotos syndrom. He has had multiple issues since birth. I accidentally ran onto information on soto's while searching the internet. Anyway, I like your site. I feel the same way sometimes. I was wondering if you would have time (ha) to help me. I won't get into all of Benjamin's details now, but could email you a list of symptoms and medical problems he has..... my email address is if you are interested email. if not....fine also