Take control of your epilepsy and seizures. Seizure management has never been easier.
TAKE CONTROL TODAYI don't know what it is about the way that Kaitlyn looks but it's not right. She started Depakote on Thursday, it was a double dose to bump her levels up but I am really wanting this to be the medicine that works. These "episodes" that she is having that I think are seizures (not sure, as they all haven't been confirmed...) she will just get upset, scream, cry and repeat the same words over and over again... her eyes don't look right. She doesn't look like she's there, and they are happening alot and for along time, several minutes at a time. I thought I was crazy since everyone else is in denial, even Nic calls her seizures supposed seizures.... like they aren't really happening. Well tonight at dinner we met my in-laws and my father in law (her Papa) said "It's like she goes into these rages and no one is home, she doesn't look like she is there.... there is something wrong with the way her eyes look!" Well I am sort of glad that someone else noticed it. Atleast it's not only me, except that means that they are becoming more noticeable. She is really exhausted lately so maybe that it making it worse. I am really worried about her. I can't blame it on the Depakote because it really started before the Depakote, and I don't think it's any worse, I just think we are more sensitive to it. This medicine has to work, I am not ready to stop it yet by any means. We just had blood work done today along with Christopher's MRI. I really am ready to know what that showed. I am nervous as hell. I just want answers.
I have been thinking about why both kids would have this, well not "why" but if there was maybe some family history that I am missing and I have come to the conclusion that maybe some of the family has it, and doesn't know it. I mean, we have a very strong history of migraines.... that are so debliatating that they make us all sick.... I have a great aunt that had Epilepsy, everyone says from a car accident but no one knows for sure. It's possible she had it before and that's what caused the car accident.... then I was thinking, my aunt, my mothers sister.... has these episdoes that no one has been able to determine what they are.... she will black out, not be able to talk, not be able to comprehend anything and just wander... they have done sleep studies, MRI's, CTs, and still not able to figure it out... sort of sounds like Complex Partials to me.... But I am no doctor by any means...Then I was thinking too that I don't know my fathers side, they could easily have it or someone... I would never know.... same with my husband, he only knows some of the family and he has one cousin who has had 2 seizures out of no where in like 3 years.... and everyone says there is no family history..... I don't know...
Nic and I aren't weathering the storm very well. I am really worried that the stress from all of this is going to be enough to cause us to split. I gave him my wedding rings back tonight, I was so mad at him. He isn't the man that I married, I don't know who he is anymore... he gets so mad at the kids (and he really is a great father). He acts unhappy when he's home and I think he is discouraged that something is wrong with our kids. Sure we didn't plan for this nor expect it but it is what it is and they are still perfect. I don't know. I just can't deal with the fighting while trying to be strong for the kids and also dealing with my dad dying. It's alot... I don't know. Nothing is going the way it's supposed to.

Add your comments
This is how it works for my hubby and I. Since I am the stay at home mom (like you), I am witnessing the bulk of the unusual behaviors in the kids just because I am around them more hours of the day than he is. I have also made it my "job" to educate myself about epilepsy and know more about it than my husband who is at work all day. Ignorance equals fear and not knowing as much about it may just be causing your hubby to panic. You have posted that you are having trouble accepting that your children may have some health problems. But I bet you are farther down the road to acceptance than maybe your husband is. (I know this to be true of my family. I am ready to medicate my son, my husband still is not because even after nine grand mals, he hopes that it will just be "outgrown")
Give him some time. He will catch up. Also, it sounds like you may lack the the large family support system like I lack. So, when that leaves you to only have your hubby to talk about these problems with, it probably stresses both of you out. My husband and I find that it is so hard to feel like our children's health problems is all we have going on in our lives right now.
Is there any way that you could go out on a date? (LOL we have NO babysitters, so this is always a joke for us when someone suggests it.) Go out and do not say a word about the kids? (LOL here too, it is impossible I know)
You and your husband have to have something to look forward too besides doctors appointments for the kids. You are doing great. Hang in there. I hope that I do not sound too busybody, I just know that my hubby and I are not on the same track with these medical issues all the time and I can relate to feeling like it is falling apart.
Take Care!
Jean
Jean,
Thank you. We have tried date night and it just doesn't seem like we connect. Like you, babysitter... what's that? Hahaha... our parents will usually watch one kid while the other set of parents watch the other kid. It's just a struggle everyday to make it work and at times I realize that I need to focus on the kids. I just wish that he was more supportive of everything going on. I feel like I have to educate him about everything medical wise with the children and sometimes I feel like I have to justify it all to him... I don't know...Thanks for the advice, I think I am going to try the date thing again this weekend to see how it works. It's all just alot to deal with and I don't know if it's to late.
Take care hun,
Emily
emily, do kaitlyns eyes kind of glass over when no ones home? cuz that is typical seizure. also screaming the same words over and over is classic complex. she is going to cry cuz she is a baby and doesnt understand whats happening to her. i am awrae during complexs and they are scarey feeling, so if i feel that way just think how kaitlyn must feel. complexs do tire you out to, i pray the depakote works and quickly. i think i would sit down nic and tell him we married for better or worse, right now we are going thru a really rough patch but things will get better but i need you there at my side as my partner. see how he reacts to that. thats 31yrs of marriage advise talking and raising 3 kids that were teens all together. awwwwwwww!!!!!!! it was no picnic. but you have to stand together not divided. it will only hurt the kids cuz they can feel the tension. luv ya emily, keep me posted, sylvia
Sylvia,
Yeah her eyes glass over alot lately. I don't know what is going on anymore with her. It seemed like her seizures were only so often but now everyday almost all day. At first I thought that I was just being sensitive to her changes and that this was just her attitude but even my father in law who has NEVER seen one of her seizures noticed the changes in her. She will start to scream and cry, get really agitated and then repeat the same thing over and over again (whatever she was saying right before the episode hit).... It's like I know that they are seizures but everyone else is fighting me on this... does that make sense? I called the Epi Specialist, I hope they can help. It's really concerning for me about all of this because for her seizures to all of the sudden increase, it makes me wonder what is going on. It's like something has happened to cause her to get this bad, this quick. Unless I have just been missing it this long. I don't know. I am trying to hold this family together and am really losing my ability to do it. I have to take care of the kids and be their advocate, how do I hold it all together without jepordizing their happiness?
Thanks Sylvia, it means alot that you care. You have helped me so much in these weeks that I have met you. Take care hun!!
Love-
Emily