Wednesday, March 13, 2013

Hydrocephalus

My youngest son, Cason, has been having seizures for about a year now.   He has seen a neurologist, where they did an EEG, and the results were normal.   They diagnosed him as having breath holding spells, even though they had never seen the actual seizure part.  Pretty much they thought I was over exaggerating and making things up.   I finally got a video and took it to the ER with me after he had 2 seizures in a row.  The dr there said it was definitely not breath holding spells, and she was going to call the pedi neurologist.  That pedi neurologist was the same one that we had seen, and diagnosed it again as breath holding, OVER THE PHONE.  She never even looked at the video.

So yesterday, Cason had 3 seizures in a row.  Nothing that I know of triggered them. He wasn't upset before hand.  We were walking into the kitchen, and I heard him fall behind me.  He is only 2 .. he's clumsy sometimes.  I turned around, and he was in full on seizure mode.  The entire time he is not breathing.  His eyes are rolled back and to the side. His hands and feed are curled, and his arms and legs are arched, and going to the side.  He falls asleep IMMEDIATELY afterwards.  He then wakes up crying.  This time, he woke up, and immediately went back into another seizure.  Twice.

My husband told me to take him to the ER.  (Something I am very wary about doing because of all the crap I've been given about it.)  FINALLY the dr orders a CT, and lab work.  His labs or normal, but his CT is not.  He has hydrocephalus.  The dr said it's a lot of fluid, but isn't to the bad point yet, and we will need to see a neurologist again.  THIS is what is causing the seizures for almost a whole entire year now.  I am mad, upset, worried.  How do I know when it's to the bad point?  What if everyone just blows him off again?  I'm just so fed up with drs and hospitals at this point.  They are supposed to be helping people, and instead they make me feel like I'm over reacting when I KNOW something is not right.   :(

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1 comment:

  1. You are a great mom to keep pushing when you know something is not right and that they are not doing their jobs. Way to go!

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