I've had absence seizures my whole life and I'm 35 now (well, in a few months!)

What I found helped immensely was dietary changes. Your baby is on formula, you said. See if you can find one with fewer scary ingredients in it. Maybe even try a hypoallergenic one. Growing up, I was wheat- dairy- and sugar-free. My seizures decreased because my blood sugar leveled off. They need to add sugar to formula to sweeten it, but if you read the ingredients on yours, chances are there's a ton of stuff in there that most moms would rather not feed their babies.

For yourself, learn, learn, learn how to stay calm and relaxed. I know meditation is probably not on your schedule right now. (If you're a devout follower of a religion, then maybe there's a prayer that is customarily said over and over again, like the Hail Mary. Same thing.) But your child will feed off of your fear. My son was born with immature lungs. He's three and fully healthy now, but birthing him into the NICU sent me to hell. His first year of life was not what I had imagined for him, and I do believe it has affected him negatively. (I'm trying to undo that now, and it's not easy.)

If you can learn to stay calm and relaxed, your daughter will learn to grow up with the feeling that this is normal life (as scary as it may be to a mother to think of that). You can think things through more easily, enjoy your time together with her, focus on her development, research other possibilities...But you have to find a way to authentically relax yourself. (Suppressing your fears and anger and frustration are not what I mean here.)

Easier said than done. But the mental change I had to make to keep my family together has made a massive difference. And for myself, I'm continuing to experiment in non-medicated ways to control my adult absence seizures.

Good luck. My thoughts are with you.

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I agree with you, I don't think there is enough knowledge out there about the OTHER types of seizures, the hidden ones, the ones behind the scenes. I've had doctors look at me point blank and say "if you were conscious you didn't have a seizure." And so, what could have been an easy diagnosis became a ten year runaround.

It sounds like an absence seizure. I had a student in my preschool class with petit mal epilepsy and that is what she would do (although she was five, response would be a little different) She would stare vacantly, look lethargic, and would not respond. She would also be limp in your arms BUT would blink like she was conscious.

If you are worried about not catching something, I would suggest a video camera. I would also recommend going to her neurologist and talking with him/her about this and see if there's anything more you can do. It could have been a complex partial that generalized into a grand mal (If I read right, she ended up having one at the end correct?)

I'm not a doctor, I've just been researching like CRAZY!! So the best thing I can suggest is talk to your neuro.

Good luck with all of this, it can't be easy

AJ

 I can totally relate with what you are going through, my son is 9yrs old and just recently he was diagnoised with right temporal lobe seizures, I was in his room checking up on him because he has been restless for the last 9 months not sleeping, when I saw him go through a gran maul seizure.  We found out through an EEG that he has being having silent seizures for a while, and I feel so bad that I did not know what was going on with him.  Besides the not sleeping, his grades had dropped in school and we had noticed him playing a lot with his hands, but they had told me he was having behavorial problems.  I still dont know all that about seizures or what I am facing, Im scared, frustrated and just dont know where to turn.... my prayers are with you and your daughters

I am a grandparent of a five year old with seizures.  Sometimes I feel so alone in this, and imagine that my son and daughter-in-law must feel alone too.  It can be so overwhelming!!  Over the last so many months, I have been praying more and trusting God more.  It has made my time with granddaughter much more enjoyable, and she has responded.  She doesn't talk very much, and it is in the verbal area that she has been most damaged.  When I see "normal" children out with their families, I ache inside.  I will NEVER quit trying to understand epilepsy, and never quit trying to get answers for how we can help my sweet Ella more.  She is on too much medication, I think, and so that is yet another worry. 

I babysit every Wednesday, and kind of get anxious before each time.   I want to do right by Ella, want to handle things correctly should she have a seizure on my watch.

Hang in there.  It sounds like lip service, but I mean it from the heart.

I understand, it is hard. I have epilepsy and my daughter developed hers at the age of 4 years and now I have a granddaughter who first experienced hers at the age of 14, so I know what you are going thru. Just be strong and know that there are lots of people that are here to help you in anyway. God bless  you and keep you strong.

I have 3 children but they are all ages 16 & up,but they were the same as your children.I can only suggest you take it one day at a time,focus on providing your children with all your love, and attention,which it certainly sounds like you are doing.They WILL be fine especially surrounded with all of your love.

my son is 2 yrs old and he is taken keppra and i don't think that helps him at all i know what you are going thru everytime i see him in a seizure i want to cry and start yelling at the doctors asking why can't they fine anything for these seizure he is too young well i hope you and your girls get thru this i am praying for you all

I can definately relate.  It feels like your heart is ripped right out of your chest whenever they have a seizure. You are doing the right thing and Im sure you're a great mom.  I have found blogging about my daughters journey (and mine) is extremely helpful.  Being a single mom of 2, it helps me blow some steam.  I am also considering the staying at home option.  It's just different not having another income, depending on the government.  I admire you for putting your story out there and advocating not only for Chloe but all the other kids with this disorder.  I wish you peace and lots of luck, enjoy her.  Oh, you can read my story on this site. Its titiled Jessica Roiz.