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Help! confused parents of 4 yr. old

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Posted 11/20/2005 3:01 AM (GMT 0)
 Hi I am new to this (site & seizures) so please bear with me. I am so lost right now, our little girl 4years old has started having seizures approx. 3 weeks ago she was seen by a neorologist where she had a few absence seizures right in front of him so his diagnosis was pretty simple he ordered a eeg for her to quote"confirm his diagnosis" it is scheduled for Nov.30 about 2 weeks away as far as we know she has never had a grand mal however we wonder if shes had them in her sleep as 3 times I have checked on her in the night & she was soaked from head to toe & peed the bed which is nowhere near normal for her anyway she has absence seizures all day (hundreds) & several times a day she has seizures where she pees herself, loses all muscle tone & stops breathing & is disoriented a few minutes afterwards. the doctor we seen seemed very unconcerned & really was no help at all he told me look in the medical encyclopedia under petit mal seizures & thats what she has. I was wondering if there are any kind souls out there that could help us we are very upset about this, & have know idea what to expect! will she ever have grand mal seizures? what would we do if so? & are we overreacting? is she considered an epileptic? should I get a second opionion? Oh by the way they put her on Depakote she has been on it for almost a week & still has as many siezures maybe it takes awhile to get in her system? any help would be greatly appreciated! Please dont be afraid to tell me if Im overreacting I know there are people out there alot worse off than our little girl, but we just Love & Adore her sooo much! Thank-You, Jolene  
Posted 11/21/2005 12:25 AM (GMT 0)
hi jolene,

i found this website fantastic too so keep asking your questions and you will get plenty of helpful genuine advice and support.  i cant help you much, i am pretty new to it all too, but our wee boy turns 4 in a few months and has complex partial seizures.  they are pretty well controlled on Epilim and he is down to having a sz that lasts for about 2 minutes every fortnight, so i feel much better than when he was having 3 a week lasting for 8-14 minutes.  i totally empathise with you and your family, it is a scary time watching a wee person that you love so much going through this.  only advice i have that may be helpful to you is to get a second opinion.  i was advised by somebody on this site not to waste time with a pediatrician but to see a specialist, a pediatric nuerologist, with epilepsy experience, and i wish that i had heeded that as we have had a rough few months with mis-diagnosis and possible over medication.  keep in touch.

jo. 

Posted 11/21/2005 3:43 PM (GMT 0)
Thank you guys much, I called the doctors today & told them I would like a second opinion & would like to go to a specialist in Pittsburg so hopefully we will get in there & find some answers Gabby had a big siezure in her sleep this morning only lasting a minute but it was a big one I thought by now the Depakote would start working but it just seems like shes getting worse if that makes sense?..the siezures are lasting longer than before the medication! I'm sooooo glad to have someone who can understand what I'm talking about Thank- You all!!!, Jolene
Posted 11/22/2005 10:52 PM (GMT 0)
Hi, Just found out today we are going to Pittsburg on Jan. 12 for our 2nd opinion Gabby really is'nt starting to show any signs of getting better yet in fact it seems to be worse they last longer she has more syptoms she started back to school (preschool) yesterday the doctor told us she'd be able to so I went with her to make sure everything would be ok & to say the least they called me into a confrence & said they thought the siezures would be under control a little better & until they are they would like me to continue going to school with her because she just has sooo many, I dont know what to do I have to take our 2 year old with me when I go on top of everything else (thank goodness shes a good baby!) I dont want her to miss school but I dont think I'm going to be able to go to school everyday I probably didnt mention before I also run a farm wich takes a lot of our time my husband is a truck driver I guess its just one more obstacle in the course we will have to figure out. Gabby has a EEG on the 30th this month this will be her first one I'm kinda nervouse about it I dont even know what it is! then shell have to have another one when she gets in with the other doctor.. question for ya, should she have had a ct scan or mri or anything? well, Thanks for asking about us I sure appriciate having someone who really does know what we're going through I am open for any knowledgeable info this is all so new to us!
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