L.Y.
J.,
I noticed my son having staring spelling last August. He was 7 then. During the most severe one his head tilted to the left and up with slight movements, right arm pulled in to the chest. Our doc said it sounded like absence seizures (petit mal). We were referred out to a ped. neurologist and for an EEG. It came back normal. We were told to watch him as it would get worse if it was seizures. We also had an MRI which came back normal. Our friend is a PA and he said if we ever notice anything to get video of it to help. A neuro can only go on what they see. In Feb of this year (he's now 8) my husband and kids were away for the weekend at our friends. My husband woke up to him breathing weird and saw him having a seizure. He had another a few hours later. We called the neuro and got an EEG for the following week. Again nothing on the EEG but this time we had 10 videos of him that we were able to show the neuro. She had said that it sounded like a sleep disorder until she saw the video. My son was put on one med (I think to rule out a sleep disorder as the med should have just relaxed him) but the seizures continued to happen and happen more often. We went in for a video EEG to the hospital (nightmare with the ins. company but they eventually allowed it!). He was hooked up to an EEG for 24hours and had a camera on him the whole time (you can move around though and play games, color, etc) in the hospital room. He had 2 that night. The tech had told us it was extremely common to have seizures while sleeping. The neuro was able to show us on the EEG where the seizure started (looks like a bunch of lines to us!) and could pin point where in teh brain it's happening. She said they are epileptic in nature, meaning there is no reason for them. He didn't have head trauma, isn't diabetic and slipping into a coma...there is just no reason. Epilepsy is a generic term. His are in the left frontal lobe and occur in pretty much the same spot...they aren't complex which affect more of the brain. They happen my son reaches REM sleep. We thought they lasted about 1 min but when looking at the eeg we found they are almost 2 min long! We just don't see it at the beginning! It takes at least 20 sec to become visible to a person (coming from an eeg tech). When watching him in a seizure I was already concerned that he couldn't keep from suffocating on a pillow so he had been with out pillows since March. The neuro again told him he was not allowed to have pillows/stuffed animals in bed since he could not control his head. This was a huge arguement between us so we made sure the doc told him no pillows. I had to pull it away twice! Since he was 8 and still arguing with us on the 3 hr drive home we finally told him that if he slept with a pillow he could die and that would make us really sad. It was the hardest thing we've ever had to tell him but he looked at us and said Oh ok! and that night went to bed with no argueing!!! He is on Cabamazipine 100mg in the am and pm. We should have increased to 200mg in am and pm by now but he was extremely hungry and tired with it so after calling in each week we decided to stay with the 100mg. He has had 2 seizures in teh past 2 weeks so I think we will be increasing the dosage in the evening at least. We go back next month. His side effects to the meds are evening out now too so that is good. Hang in there! Our neuro won't say that a child will 100% grow out of this but it can happen. Sometimes the brain just needs to grow. My son understand a bit about circuit boards and electricity (loves building) so explained that there is just a 'short' at one of the circuits...it may or may not repair itself. Either is fine. Don't be surprised if it takes a few times to get the meds correct for your daughter. It took 3 meds before they found the one to work best for a friends son.
