Tag Archives: epilepsy

hi, my name is janie, and my son has epilepsy

almost a year ago, ben and i started noticing that our middle son would drop his head randomly. his eyes would roll back to the right, and then he would come back to, maybe have to be reminded of what we were talking about, and continue on. in june, we noticed that they were getting worse. he would also have random nose bleeds, but all kids get nose bleeds. we didn’t want to jump to conclusions, but we knew that something just didn’t seem right. in august, we were at ben’s mom’s house. while we were leaving, his sister said “bye, izi bear! i love you!” he turned around, dropped his head, and just looked at her. he didn’t know what she had said. i said “did you hear her? aunt hopi said she loves you.” he said “i wuv you, too!” and out the door he went. we started counting these “drops” he was having, and would count up to 50 a day. about a week and a half later, he had the worst nose bleed he’s ever had. so, i called our pediatrician. the nurse got us in the next day. thankfully, that morning, we were able to catch about 3-4 “drops” on video while i was cutting his nails. our pediatrician ordered an EEG. during the EEG, i saw about 10-12 “drops” and we knew that something wasn’t right. ben could see the waves on the test going crazy every time he would have a “drop”. we left not feeling very encouraged, and didn’t know what was about to change in our life. about a week later, i got a call from our pediatrician. “the EEG indicates that he has what’s called Childhood Absence Epilepsy, or CAE.” what? my son has epilepsy? how can this be? he’s the most joyful 3 year old i know. ok, ok. so what do we do? the orders were to start him on a seizure med and we would try to get him into vanderbilt to see a pediatric neurologist there. before our doctor’s nurse even called us back, vanderbilt had already called to see if we could come in 2 weeks. yes, of course. we’ll be there.

we started a medicine called keppra on izi. i didn’t notice much of a change in his seizures, and as we told family members and friends, they would say “they must be so little. i’ve never seen him have one.” it was such a mind boggling thing, to have to try and explain that our child has epilepsy, but not the type of seizure that everyone thinks about. honestly, this is the best type of epilepsy he could be diagnosed with. since we’ve started the keppra, it has been increased as much as it can be. he is still having seizures, and our doctor at vanderbilt wasn’t pleased with that. over Christmas break, i talked with our doctor and he said “i want to get izi an overnight EEG here at vanderbilt. could you come as soon as we called you?” mercy. “of course i can come. we’ll do whatever we need to do.” well, a week went by, we increased his meds one more time, and he was still having seizures. the epilepsy center at vanderbilt called on monday at 12:30 and said “y’all are coming from jackson, so how quickly can you be here?”

“no earlier than 4:00.”

“ok, come on, and we’ll get started whenever you get here.”

ok, call ben (who was in memphis for work), call mom, call brenda. who can stay with dillon and sammy? what do i need to pack. ok, mom is coming to stay with the other 2, pjs are packed, a change of clothes, huggie, giraffe, leapster, dvds, what else do i need? my mom got here and immediately asked if i had everything? “do you have your pajamas? do you have a clean shirt? do you have money? a credit card?” it was a whirlwind.

we got to vanderbilt, and i didn’t know where to go. so, we went to our neurologist’s office, and they told us that we were being admitted to the hospital. what? no one told me that. ok, here we go. we find admitting, get checked in, and taken upstairs. izi is on cloud 9. he has momma all to himself, and vanderbilt children’s hospital really is amazing. we get to his room and immediately doctors and nurses come in and start asking us questions. he’s such a champ. finally, a lady comes in to start putting his “wires” on him. she got through most everything without izi crying at all, until the end. but he pulled through, and was so brave. so, we sat and watched movies, and every time he had a seizure, i pushed a button. the nurses would run in and make sure everything was ok. he slept like a baby. then, it was morning, and izi was ready to go. he wanted to leave so badly, but he couldn’t. we had to stay in the room. the doctor came in and said “he has classic absence epilepsy. his EEG indicates that he had a seizure every 20 minutes, even through the night. in order to help him more, we are going to put him on another medication, and keep him on the keppra. and we’ll see you back in 6-8 weeks for another EEG.” every 20 minutes? my baby was having a seizure every 20 minutes. oh my goodness. that’s so much more than we thought!

through all of this, we’ve learned that God knows better than we do. none of this is a surprise to the Lord. he knew before the beginning of time that izi was going to be diagnosed with epilepsy. i have to trust in Him. He knows better than i do, and He wants good for me, for izi, for our whole family. all we can do now is take life one day at a time. we will constantly be watching our son, changing dosages of medication, going for more EEGs, and trying to love everyone a little more, and help other families that are going through this. it could be much worse, but for now, this is our life. our hope is that izi’s seizure activity level will come down to 0, that he’ll be able to follow directions well, and that he’ll eventually be weened off of all his medications. we WILL figure out our new normal, we WILL figure out his meds, and we WILL live our abundant life that Christ has given us.

for more info about vanderbilt pediatric epilepsy, you can go here. thanks be to God for He is doing wonderful things.

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