hello

Crystal - posted on 05/20/2009 ( 2 moms have responded )

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my name is crystal on aug. 15 2008 my son caleb was born. healthy pregancy and no complactions. the day after he was born he had a "spell" where he turned blue and quit breathing, his whole body went limp and the dr thought he choked. so they kept him in the nursery to keep a close eye on him well much to our suprise he had a few more "spells" like that. so they put him in the Nicu and started runnin a bunch of testd on him and all came back normal they had one last Idea which was to do an eeg on him to see if it was something neurolgical. so they did one an dhe had a "spell" during the eeg (thank God) and they figured out that he was having Seizures. My heart sank. They did an Mri to make sure there was no damge to his brain from habving the seizres or that there wasnt a tumor or something causeing the seizures. it came back clean. so they put him on phenobarbital and he sees a neuro. once a month his visits were moved to every 2 months but he had a seizure 2 weeks ago and the dr doesnt understand why he keeps having them.

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Heather - posted on 05/21/2009

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I feel your pain. My son had 60-70 seizures over 1.5 yrs before we found the right med combo. He still has breakthrough seizures 1-2x/yr, but they're usually due to weight vs med adjustments. It could be that he's growing so fast that he can't maintain a therapeutic med level in his system, or he nds a different med. We went thru a few before we found the right combo. Our son is on Keppra and Topamax. Hang in there- you'll figure it out. If you don't feel you are getting hte best treatment for your son, you can always go to another neuro. Always question Dr's. As parents we have to push them (nicely) as we know our children best and they nd to listen to us.

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Crystal - posted on 05/21/2009

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I am so happy that I came across this group on face book until lastnight I felt so alone. None of my friends have kids that have this problem so they dont understand it feels really good to have people that have been in my shoes and can understand what im goin thru. His neuroligst is a Great Dr better then the first one. He sees a highly recomended dr out of Akron Childrens Hosptial in Akron Ohio. He cares and listens to everything I have to say and doesnt do anything without asking what we think first. he has had an eeg back in October that came back abnormal with seizures showin up in another part of his brain too. they show up in the left frontal lobe and the tempral lobe.He goes to see the neuro. at 10:30 tomarrow.

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