I just wanted to introduce myself

Carrie - posted on 01/01/2009

Hi Tabitha - my name is Carrie and I just joined the group a few days ago. I am a stay home mom too, also with three children - all boys!! My oldest, Dayne, is nine and has had seizures for a little over five years. He was bitten by a mosquito when he was 18 months old and contracted LaCrosse Encephalitis. He initally presented with a fever, loss of appetite and very, very sleepy. I took him to our local ER and that was when he had his first seizure. They thought it was a febrile seizure from his fever, but sent us to a childrens' hospital by helicopter just to be safe. He was in the PICU for a few days, then we spent four more days going through all kinds of tests since they really weren't sure what was wrong. About six weeks after we came home, the hospital called to say one of the tests came back positive for encephalitis. He didn't have any further problems or seizures until he was 4, then they came back horribly! He had a couple grand mal seizures before we could get him into his neurologist, and he put him back on meds, and it has been a battle ever since!



He has taken five different medications, he is allergic to two of them. We changed his diet, but didn't see any improvement with that. We took him to an herbal doctor for naturalistic therapy, and that worked for a few months but once school started this fall, he started having seizures daily again. They aren't grand mal ones, but they mess him up for a couple hours after he has them. They only last about 30 seconds to a minute, but it seems like forever while I am sitting and watching him go through it! He gets very confused and sleepy after them. School is very challenging for him as well as attention and impulsivity. And the side effects from his medications cause all sorts of problems too!



We are actually going through all the insurance paperwork right now to get him VNS therapy. They put an implant in his chest with a wire that connects to the vagus nerve in his neck which will sent impulses to his brain continuously and hopefully will control his seizures. I'm keeping my fingers crossed that this will help him.



My middle son, Blaise, is four and is healthy. It is hard for him to understand what happens to Dayne - as I am sure you are experiencing with your kids too! My youngest, Kruize, just turned one and he has a narrowed airway due to being intubated when he was 6 weeks old because he had RSV! I have spent lots of time in the hospital with both the boys and it is very easy to get discouraged! Just try to keep a smile on your face and find the things in life that make you laugh! Stay strong and don't be afraid to ask for help if you need it!! Hope to chat with you soon!

Katie - posted on 01/01/2009

Hi My name is Katie and I am new as well. I have a daughter who is 2 an healthy and a son who is 5.5 and has epilepsy. He was just diagnosed in June of 2008 but, has been having seizures since September 2007. He has nighttime seizures only, not daytime and we are on our 4th medication trial right now...nothing seems to work. the first one was the best for preventing seizures, but the mood swings were terrible. so far the emotional trauma from the meds have been the hardest part. It is nice to have other people who get what is happening instead of just saying o I understand, or he ll grow out of it right? Hopefully all goes well with you and your family

Melissa - posted on 12/31/2008

hi Tabitha my name is melissa and I just joined this group today....my son Niklas who is 4 1/2 has been having seizures since he was 3. I also have three children and my two other kids peter 6 and samantha 19 months are healthy and they have no medical problems. We have tried 8 different medications since we started this battle and he has not responded well to most of them. He currently takes trileptal which contains his seizures during the day but not at night. He seems to have two a night ( that we are aware of). He wakes up upset and crying so that's how we know he has had them. we just got done with our last test before he is considered for surgery. He has had a number of tests done the past year and a half and finally two months ago our neurologist thought it was a good idea to see the head neurologist at UCSF in order to move forward with the possiblility of surgery. We are now waiting to hear on January 15th what the surgeons want to do. Soooo needless to say I'm full of fear and anxiety, and stress. i am however relieved that surgery may be the anwser. I just can't see going on like we are for long term. My husband, son and I have haven't gotten good sleep for a year and a half. I found this site through a friend that sent it to me and I am so happy to meet and see other mothers who can relate and know what I'm going through because they are going through it too. Does your daughter have daily seizures? what meds are you trying with her? I know you can relate to the frustration and sadness this disorder brings....some days I don't know how I make it through but somehow I do.....how are you getting through your days when your daughter is having a hard time?? melissa