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danielleg

New here and can really use some help.

Back story: 

My son is 4. He has various issues including Apraxia, sensory processing disorder, delayed milestones, and most recently we have found out that he may have diminished hearing. Because of all of these issues, he goes to a special needs preschool where he is in a self-contained classroom. He is a very sweet, smart, social kid and is making a ton of progress. I have a history of febrile seizures and was on meberal from when I was a baby until about 12. I haven't had a seizure in about 20 years.

Fast forward to a few weeks ago:

I get a call from the school nurse that my son is with her saying his head hurts. She has him lie down and sends him home at the end of the day. In his backpack I get a note from his teacher that he wasn't acting himself. She said he wasn't responding to his name, seemed "out of it", and couldn't participate in any activities. She thought that it was because he was on allergy meds. Well he hasn't been on allergy medication for months because it made him crazy, and I guess I never told her that I took him off of it.

My husband brought him to the doctor, who diagnosed him with strep. My son has had strep 5 or 6 times this year and we think he is a carrier, so he always tests positive. He wasn't complaining of a sore throat, had no fever, and was acting ok (but a little out of it). The pediatrician sent him home wtih antibiotics, and because he was acting fine, had no fever, etc., we sent him to school the next day. I also wrote a note to his teacher thanking her for telling me about his behavior and by the way he isn't on allergy medication.

So the next day I get a phone call from his teacher. She says "I didn't want to scare you yesterday, but in addition to being non-verbal/not answering his name/etc., he wasn't using the left side of his body". She says that he couldn't lift his left arm, was limping, and was squinting. So that night we head into the ER. They do a cat scan and blood work, and everything comes back normal (as expected since it was 24 hours later). The doctor at the ER says that it could have been a seizure and what the teacher saw could have been Todd's Paresis, and refers us to a pediatric neurologist.

After meeting with the pediatric neurologist, she decides that she wants to do a 48-hr video EEG on him. She says that if she sees enough after 24-hours she will let u go. I arrived at the hospital with him on Monday, they set him up on the EEG, and we stay the night. The next afternoon, the neurologist, the pediatrician on staff on that floor, and another random doctor walk into the room. Immediately I'm on edge because I wasn't expecting to see 3 doctors. In fact, I was expecting to be told that they saw nothing on the EEG, everything is perfectly normal, and be told to go home. Instead, the neurologist tells me that the good news was that we were being released. However, the bad news is that things "got juicy" (her words) overnight. She said that she noticed a lot of things happening on the left side of his brain while he was sleeping (to tell you the truth, I noticed a ton of "spikes" while he was sleeping - way more than when he was awake - although I have no idea what I'm looking at), and while he didn't have a seizure while we were there, that the abnormal EEG coupled with the episode at school (which she says she thinks was a seizure) and all of his other issues is enough that she wants to diagnose him with focal epilepsy. She wants to meet in 4 weeks, but in the meantime she would like him to have a sedated MRI. She also prescribed Trileptal.

To say that I was in complete shock is an understatement.

I won't be putting him on any medication until I get a second opinion. In the meantime, I'm freaking out every time I see him zone out. She didn't give me any information about what to look for, what to do if I see something happening, what the prognosis is, etc.. I scheduled the MRI (which we probably should have done anyways because of his other issues), and I scheduled a follow-up appointment with the neurologist. I guess I am just at a loss here. I thought I read online that you need 2 seizures to be diagnosed with epilepsy. What do I do now? Where do I start?