The visit with the neuro went OK. On one hand I feel reassured and on the other, not. That was an enlightening statement, wasn't it?? The neuro feels reassured that this is "just" a cyst. I was NOT, it is HUGE, like 2 or 3 inches! IN. MY. KIDS. HEAD! Now I know he doesn't use his brain for much now, but someday we would like to think he might... The neuro thinks the seizure and the cyst are not connected. Not connected? My kid hits his forehead, has a massive seizure, the place where he hit his head was not hit hard enough to leave any kind of mark, bruise or bump, and somehow this is unconnected.(They did say, that is odd) I am not buying that. And to top it all off, the place, (posterior fossa) where the cyst is located means it is supposed to be congential. Well JJ had an MRI at the age of one and there was NO HUGE cyst in his head. You would have to be a blind idiot to miss this. The doctor even said he had never seen one this large. And if it was too small to be seen, then it has GROWN, hugely! Anyway. More tests, more doctors.
And JJ. He won't even talk about it. He was silent the whole way home from the doctor, except to answer my question if he was upset with a grunt. Won't talk about it now. I guess he needs time to process. And here is the deal. He is nearly 17. There is nothing we can do if he refuses more tests and/or treatment. He needs to come to this on his own and we need to allow him the time to do it, even if it not as we wish it. Angst. Mine, his, ours.
Tuesday, June 06, 2006
Angst
Posted by
Jo
at
3:08 PM
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7 Kids Who Want To Play:
Get as many second opinions as it takes for you to feel comfortable. My Mother yelled at several doctors who told her "Tut-tut, you're being over protective, he's just got the flu" before she found one that would listen to what she was saying and they finally found my brother's problem.
My biggest, most important advice ever is this: Get as many 'second opinions' as it takes for you to feel comfortable.
(and never worry about hurting the doctor's feelings by telling them that you'd like another opinion.)
You should be left with no questions after speaking with his doctor.
I agree with Jenny. this is your child. don't let anyone bully you...
not that I think that might be a possibility... :)))
much love and continued prayers on the way...
btw... a bap is a bun... like for burgers or bacon sandwiches. a finger roll is a hot dog bun, for saugages. but not for fingers... :)))
Glad to know what a bap is. I was right behind you on Mollie's blog saying "bap?"
Second opinion if it's possible.
Er...last I checked, "nearly seventeen" was technically sixteen, which was still over a year from legal adulthood. I mean yes, he's a bit old to drag kicking and screaming (not that I don't think you'd be capable should it come to that), but doesn't he still kind of have to listen to you on these things? I agree--a second opinion is definitely in order (congenital, my butt!).
When I was sixteen, I didn't want to get braces. But they made me. They made me because it was in my best interest, and I didn't care what happened to me or my mouth.
When you're sixteen, you're almost an adult, but there's a reason you're not responsible for yourself yet.
Jo, you know best... screw the doctors, and guide JJ as best you can... I bet he'd listen. He must know how much you love him.
Hey! My husband has one of those. Noticed it on his first MRI at age 22. Still has it. Hasn't caused any problems. In exactly the same place too. He's 34 now.
Hope that's somewhat reassuring....
oh, forgot to add that he's a rocket scientist. Literally. He was also told that it is congenital. I admit it freaked me out when he showed me the scan, but he seems normal :)
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