What is Epilepsy?

Two weeks ago I couldn't really say. The only thing I knew for sure was it caused seizures.


Isiah had his first seizure on Dec 12th. We didn't know it was a seizure at the time, we thought it was just a bad dream and that his left side was numb because he had been sleeping on it. I called for him to come get in bed with me and he tried to stand up and fell flat on his face. I had no idea about what kind of Journey we were on that night.


The next night (Dec 13th/14th a.m.)Isiah had another seizure. This time he let out a whimper. We both heard it and I said to Scott, no let me go get him tonight you got to take care of him last night. I go into his room and my baby boy is gray/white and clammy, frothing at the mouth, arms clenched to his chest, rigid and convulsing. I thought at that moment my son was dying, I didn't think he was breathing, he didn't look like it but I wasn't calm enough to check for a pulse. I jerked him up and was screaming and yelling Isiah please wake up, please talk to Mommy. I was saying to God please don't take my son. That sound he made, I will never forget. It was a gulp gulp sound like he was trying to swallow and couldn't and couldn't breathe. Scott tried rousing him and I called 911. I couldn't even think straight. I kept telling the lady my address and my name and that my son wasn’t breathing after a seizure. I tried to call my Mom thinking if I could just call her she could pray and I wouldn't lose my son. I tried dialing her number probably 5 times and couldn’t remember her number for anything. I have never felt so helpless in my life. Rhoda beat the paramedics to my house (Mom called her). She shoved everyone out of the way to get to Isiah because all she knew was that Isiah wasn't breathing. He was breathing and she felt better. I went with him in the ambulance, he still had not come out of the "postictal". We were almost to Children’s' and he wakes up and the look of horror on his face and the instant tears were terrible. I tried to comfort him and tell him it would be ok. But ya know.. I don't if it will be ok, but somehow I will make it ok for him. By the time we got inside the ER he was up and awake and feeling better. He passed all his neuro exams and they sent us home with the answer of that 80% of kids never have another seizure and just go home and wait for another one to happen. Well that is really hard for me, just sit and WAIT for another one???? I felt like my son almost died and I am supposed to wait for ANOTHER seizure.


We followed up with Children’s Neurology department, they did an EEG on Thursday the 17th and we had a doctors appointment with the Neurologist on Monday the 21st.


The EEG was almost fun for Isiah. He didn't seem to mind it at all. They put a bunch of leads on his head and showed him on the monitor how it worked. We thought the EEG went well.

We met with the Neurologist on Monday. He asked Isiah a bunch of questions, like if he ever woke up and couldn't cry for help, ever stared off in space, have tingly feelings around his mouth and had he felt this before. Isiah said that on the seizure on Saturday that he remembered getting stuck on Dear and then waking up to Scott. The Dear is when he goes to sleep he always does a little prayer. Dear Jesus please help me have no kind of dreams, if you do anything for me please do this. Amen.

They diagnosed him with Benign Rolandic Epilepsy. BRE. He had some misfiring on his right side of the brain. The right side controls the Language, Reading, Writing, Speech.
They said his type of seizure affects his right side and only happens in his sleep. I felt lucky, like we got the least of what we could have. It felt like a punch in the gut him saying my son has Epilepsy. ( I know now that even then it hadn't sunk in, I didn't believe it) He told us about 3 different drugs, one was a serious downer possible suicidal thoughts, one was really hard on the liver and bone marrow and the third causes personality disorders, behavior problems. I was like wow. I don't want to put my son on any of those. I kept thinking to myself how will I know if he is one of the kids that only has a seizure once and never has another one or if he is still having them if I put him on medicine... I said no that we would wait for him to have another seizure before we would use anti seizure medicine.

We followed up with his pediatrician on Tuesday the 30th. She examined Isiah and felt like that he had the seizure because he had been sick prior to his seizure. I left feeling very confident and assured that Isiah was in that 80% of kids not having another seizure.

Jan 1st.... or rather Jan 2nd at 1:27 Isiah has another seizure. He was in our room, has been sleeping with us since the first one happened. We heard the "gulp gulp" and knew he was seizing. His legs were rigid straight and arms were curled up to his chest. He was biting his tongue and he was very blue in the face. I was running looking for the Diastat ( medicine they gave us to give him if his seizure lasted more than 5 minutes) All I could think was its in the diaper bag where is the diaper bag.. it was in our room the whole time. (what seemed like forever was less than 30 seconds of me searching for the diaper bag) I got the diastat out. It was 1:29..2 minutes had passed. Isiah was still blue. I asked Scott is it ok to give it to him, he hasn't been seizing for 5 minutes but Scott he is blue.. He said yes Ruthie give it. I inserted the diastat at 1:29 and prayed. Scott called 911. Dad called Mom. I held my son and begged him to breath. Again...I am helpless. I have the medicine I can do everything physically possible but his life is out of my control..Dear God why are you doing this to him. Why HIM??? He believes more in you than anyone I know. His faith is pure and innocent and strong. I don't understand this. I thought you controlled everything. You said suffer the children to come unto me. I DON'T UNDERSTAND.

He was biting on his tongue. I know everyone says not to put anything in their mouths. I didn't care, I stuck my finger in the back of his teeth and pried his jaw open and stuffed his tongue inside his teeth. All I could think about was that he wouldn't want to bite off his tongue. He came to after I gave him the Diastat within 1 minute. I had him squeeze my fingers to make sure that he wasn't paralyzed (temporarily) on either side. He squeezed ok. We went to Children’s this time it was different. Isiah wasn’t alert and excited to be there. He was out, impossible to rouse, barely knew where he was, but he did know who I was when they asked. We saw a few doctors there concern was that he wake up from the diastat and to consult with neurology. If he didn't wake up by 7 they were going to admit him and start him on anti seizure medicine. I said I wasn't ok with that plan. I am having trouble at this moment with dealing with the fact he isn't in that 80%, he does have epilepsy, and that he will most likely have another seizure. I hadn't researched or given any more thought to anti seizure medicine. It isn't like you can just stop and start those things. Isiah came out of the daze at 5am. They did a neurological exam. He passed it and they said we could go home.

We got home around 6:30. Isiah didn't want to go back to sleep he was afraid he would have another seizure. We are both exhausted. Scott says go to sleep I will take the first shift. I kept waking up every 10 mins it seemed to make sure he was awake. Today went well. At 7 or so I noticed Isiah seemed sleepy. I said to him lets go take a nap, I was so nervous. We laid in my bed, I am overanalyzing every breath every lil noise. I woke him up several different times because I thought he was going in to a seizure. It is different this time. I have no 80% to fall back on... no securities of it won't happen again to comfort me. Now, it is when will the next one be.

I feel like God has forsaken Isiah. Is there other kids out there worse off yes. Isiah told me last time that he wasn't going to have anymore, I asked him how he knew that and he said God told him. I said like he talked to you? He said no... it was more of he made me feel ok about it. Where is that now?