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Anonymous

I need help for my 2 year old boy! Having what seems like absence seizures, but EEG was normal

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?!

Comments

Re: I need help for my 2 year old boy!

What type of neurologist are you seing? I am sorry, but he/she is not very competent. Just be ause he has had ONE normal EEG doesn't mean that he doesn't have epilepsy, many people with epilepsy can have normal EEGs. That EEG just shows what happened during that 24 hour period and many people need more than one EEG to see more. Some people have week long stays in a monitoring unit, some fils 6 weeks! If your neurologist doesn't know that then perhaps he is not the right one.

Second, it is very uninformed for your neurologist to say that just because be was not having convulsions, it wasn't a seizure! .?! There are 60 types of seizures, browse here for myoclonic jerks, motor focal seizures and partial seizures, it sounds like you are describing.

WHat you need is a pediatric neuro or pediatric epilleptologist! Some neuros just to older people and are unfamiliar. Children's brains are resilient and can heal and that is why manifestations of epilepsy can be odd, change and even disappear.

I hope all is well. Best wishes!

Re: I need help for my 2 year old boy!

Hi! Thanks for the response. The neurologist he is seeing is a pediatric neurologist. He did a 45 minute EEG, which my son was mostly asleep for. It came back normal, but since some video footage that I had of his staring spells was so convincing, they decided to do the 24 hour EEG. There were three different epileptologists that were working with him while he did his 24 hour stay. Even during his spells his EEG remained normal, so they said it can't be seizures. When I asked his pediatric neurologist over the phone about some research I found that a normal EEG can happen, even if the child is having seizures, he said that theoretically it can happen but it is extremely rare and he doesn't think that is what's happening.

I have looked into myoclonic seizures before, but he didn't have random jerking. It was just his arms trembling and then his face muscles tightening. I will look into the motor focal and partial seizures as well.

I don't know where to go from here. It is frustrating because he has had his work done at Mayo Clinic in Rochester, MN, which are supposed to have some of the best neurology staff in the world. So where do I go now, you know? It's frustrating and scary and I feel kind of lost.

Re: I need help for my 2 year old boy!

Here is a video I took this morning of him having multiple spells right after waking up. http://www.youtube.com/watch?v=3JKHps_m09w&feature=youtu.be