Absence Seizures in 12 month old - worried mum posting here for traffic

[WhenSunnyGetsBlue]

My daughter (12 months) saw a doctor yesterday who after a scary day referred her to a paediatrician for suspected absence seizures. I made the appt because she had been unusually tired, so this was surprising. Having looked at the symptoms I am kicking myself for not going to the GP sooner. I thought it was normal baby behaviour. Has anyone got experience with this? It's come as a bit of a shock. I'm not sure if it's just one of those things and quite normal or whether it's something to be worried about. The GP mentioned epilepsy during the consultation which (as lovely and thorough as he was) made me even more worried. Thanks in advance.

I don’t have experience for an infant but my 4 year old has recently been diagnosed having started having absences a few months ago, it took about 2-3 weeks to get a paed neurologist appointment from the GP referral then about another 3 weeks to have an EEG for formal Childhood Absence Epilepy diagnosis purposes.

She’s recently started medication and is responding really well although we are also pending an MRI as she is slightly on the younger end to develop CAE and there were some other abnormalities on her EEG so they want to rule out everything.

CAE is one of the “better” types of epilepsy to have and it is v. rare to progress to full seizures so I’m taking comfort in that also though it was a shock as they came on completely out of the blue.

I know it’s difficult as they are so fleeting but try and get as much on video as you can as they will ask to see these or to upload them to a hospital portal.

Thank you for your reply and the heads up about videos. I haven't managed to catch any on video yet.

Also thanks for the reassurance. I told a family member last night and they really pushed back and said I shouldn't have gone to the doctor as its just them trying to put a label on DD. I think it was the right thing to do.

You certainly did the right thing. I haven't had experience with my own children, but a friends DD was diagnosed with absence seizures around 5 years old. Her mum thought she may have been having them longer but they hadn't picked up on it. She was put on medication and the seizures stopped, she's now 17 and hasn't progressed to full blown epilepsy. In fact last time I spoke to her mum she was also off her medication and seemed to be fine.

How’s it going OP?
found this thread as having similar with my baby - 16 months old and waiting for an MRI & EEG. To confirm epilepsy. It’s very scary and I need to stop googling!