Hi.I'm new..I have a 1 year old with Epilepsy..

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StephanieMomof3
Regular Member


Date Joined Apr 2005
Total Posts : 26
   Posted 4/24/2005 11:21 AM (GMT -7)   

I have a 1 year old with Epilepsy..He was diagnosed at the early age of six month's..He was orignally put on Phenobarbitol and then Keppra along with the Pheno..Then was taken off of Phenobarb..And we just used the Keppra alone...After still having more seizures and them getting worse and his very UNCONTROLABLE BEHAVIOR!!..He was finally being weaned off of the Keppra..They just put him on Depakote a week ago.while weaning him off of the Keppra at the same time..He has had three seizures in the last week..Two of which he was turning blue during and after..This blueness color had lasted for several hour's after..The doc's are not sure why either...Nothing else on him was blue just his lip's..This has been very scarey for me..Has anyone else had the lasting blue effect off and on after they had experienced a seizure??Also if anyone could maybe give me a little more info on the Depakote.I would greatly appreciate it..I know every is different but it would be good to hear other peoples result's on the Depakote..(good or bad)..This is our last child..between my husband and I we have six children..ALL of which are 10 and younger..The kid's are very afraid when Jacob has a seizure..We have tried explaining to them what is going on..I AM LOOKING FOR SOME GOOD BOOK'S FOR KID'S TO READ ON SEIZURE'S..SO MAYBE THEY CAN UNDERSTAND A LIL BETTER..So if anyone has found any books out to be helpful fro children please let me know....

Thank's,

Stephanie

 


StephanieMomof3
Regular Member


Date Joined Apr 2005
Total Posts : 26
   Posted 4/24/2005 11:40 AM (GMT -7)   
Thanks I will be sure to check out the book store!!Have a great day..

Thanks and HAVE A GOOD DAY!!

~Stephanie


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 4/24/2005 1:46 PM (GMT -7)   
Stephanie, I am so sorry you are going through so much with your baby!! Did the doctor see how blue his lips were? I ask just because I wonder if there is some other testing they need to do. The seizures might have caused it, but usually they will pink up pretty fast after they come to. Since he was still so blue I would sure be alarmed too. I just wonder if there is more like asthma or a respiratory thing that needs checking? Keep pushing those doctors for good answers.

So sorry Keppra was a bad med for him. Hoping Depakote is better. (It caused rages for my son, but others have done well with it.)


LEE THE RABBIT< DOTTIE THE DALMATION are two good books. Let me get a link for you on an activity book as well. The Book section here has lots of great ones, too!

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 4/24/2005 1:47 PM (GMT -7)   
http://www.edmontonepilepsy.org/Activity.pdf

This is a free download book that is neat!

StephanieMomof3
Regular Member


Date Joined Apr 2005
Total Posts : 26
   Posted 4/24/2005 2:38 PM (GMT -7)   
Hello and thanks for you reply..Yes the Keppra was definitely nnot the right med for my son..He was horrible..Screaming,pinching,pulling hair..You name it..He would constantly injury himself b/c he was so frustrated..I have never felt so helpless in my life as I did then..I would just cry..Nothing I would do would console him..As far as him turning blue..Ye.. the doctor's did see him this way...He would not stay a steady blue..He would go from pink to blue..This had occured numerous times for the next two hours after his seizure had happened..He just started the Depakote he is on the sprinkle kind..He get's 125mg.. once a day for a week.then we will go up to 375mg in three week's..Depending on where his lab work level are they will then adjust accordingly..We are also waiting for the dates for him to be admittted in the hospital..So he can be monitored 24/7 till he seizes..This is going to be very difficult for him and us..Not looking forward to it..He is not the type to just lay around..And with having six children and my husband working 2nd shift this is going to take a toll on everyone of us..They are also ??? small seizure's as to possibly why he could be turning blue..
~Stephanie

Thanks and HAVE A GOOD DAY!!

~Stephanie

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