Hello, everyone! My baby girl is Kimi, and she is two years old. She is the youngest (and last!) of our seven children (three adopted a few years ago, and four biological), and was just diagnosed with Epilepsy about two weeks ago, no family history of epilepsy. We live in South Carolina. Kimi has been having 'staring spells' since she was three days old. Our family doctor kept saying that it was nothing to be worried about. Lately it has been happening more and more and lasting longer each time, so we asked to see a neurologist. At that time, our family doctor told us it looked like Absence Seizures, probably Early Onset Absence Seizures. Her development is normal in every other way, she knows the alphabet and phonetic sounds, and has met all of her milestones as expected.
The neurologist (actually, he's not the neurologist, because the neurologist is too booked up to see her, it's the LPN at the neurologist's office) said it can't be Absence Seizures because her 25-minute EEG came back normal and "absence seizures don't start until age 5"... yet she has these staring spells of 10-12 seconds (occasionally upwards of 20 seconds) up to six times per day that I've seen, and when you call her or tap her on the nose, she is as still as a statue and doesn't blink. When I have her blow on a whistle (HPVT), she will enter a staring spell after 40-50 blows, but she wouldn't do it at the doctor's office and he got annoyed that she wouldn't do it... uhh, she IS only two years old! I have caught it on video from start to end, and showed him. He is absolutely baffled, insisting she is too young for it to be Absence Seizures, and set her up for a 4-hour EEG because he is convinced she has something going on, but that it isn't seizures.
We go for the 4-hour EEG in about 12 days. Any hints or tips that could help? Does anyone have insight or information to share about dealing with this from the neurologist's office?
I hope everyone has a fantastic weekend!
Posted by: dawnmarierose@yahoo.com
| Reply via web post | • | Reply to sender | • | Reply to group | • | Start a New Topic | • | Messages in this topic (1) |
No comments:
Post a Comment