Hi everyone! This is my first post on here. My son is 2 years old (25 months) and has been showing signs of absence seizures for quite awhile. The first time I remember seeing it was when he was about 6-7 months old. The spells would happen maybe once every couple months, and gradually got more frequent. A few months ago it was happening once a day. Now it is happening multiple times a day almost every day.
When the spells hit, my son can be doing anything and just stop. An example was at his birthday party a few weeks ago he was opening presents. His hand stopped and rested on his gift. Then he froze. He just sat there staring blankly out at nothing. I can say his name, touch him, wave my hand in front of his face, touch his face, and shake him....nothing makes him snap out of it. Then he will blink a few times and be perfectly normal like it never happened.
Last week he had a 24 hour EEG test done. During his hospital stay he had a couple spells, but they said his EEG was perfectly normal. The epilepsy specialist even said she had to triple check because the video she saw of him during his spell was so convincing of seizures. She was surprised when his EEG came back normal.
This morning, within a few minutes of waking up, my little man had 3 spells, with only about a minute in between them. A few minutes later, while I was dressing him, his arms started shaking, but only his arms. During that time, his eyes seemed to glaze over and become unfocused. It lasted for about 30 seconds. Within a minute, his face started having weird facial contractions, with the same dead eyes thing happening. This also lasted for about 30 seconds. For about 20 minutes afterward he laid in my lap, wasn't able to sit up by himself or talk. After the 20 minutes, he sat by himself but was wobbly, and then a few minutes later was able to get up and play like normal. I called his neurologist and he said it sounds like a seizure, but he doesn't think it was a seizure because he had a normal EEG, his entire body wasn't shaking, and the shaking wasn't severe.
My son also has weird sleeping patterns. I can put him to bed and he will keep himself up for hours. He will eventually fall asleep and then wake up crying (almost every night). So his doctors think all of these staring spells are related to his sleeping patterns and want us to do a sleep study. I feel like these are seizures though. His doctors said they look like seizures, he is completely unresponsive like he would be during a seizure, but it's not seizures because his EEG was normal.
Does anyone have any suggestions, experiences, or advice for me? I feel lost....he is going through the process of being tested for developmental delays, and in a couple weeks he will see a psychologist to see if there is a psychological reason for the staring spells. But in my gut, I keep going back to seizures. Am I crazy?!