As summertime descends upon us, the roller coaster of life has started up a steep incline.
Javy started having seizures, again. He almost made four years since his last seizure. In fact, in July of 2010, he had an EEG and was found to have no seizure activity so the doctor took him off seizure meds, entirely.
Seizures suck, in case, you didn't know. Javy had his first seizure in August 2005, or the first seizure I had ever witnessed. It was the day after Hurricane Katrina hit New Orleans. We were in Northern Alabama at the time and we had storms all night, from the remnants of Katrina. I had woken up early, concerned about the possibility of severe weather. Around 5:30am, I was passing by Javy's room on my way to the bathroom when I heard Javy make a grunting noise. I went in to check on him. His eyes were half open and his tongue was sticking out with foam coming out of his mouth. His arms and his legs were moving up and down. I had no idea what was going on, I thought he was dying. I lifted him off the bed and carried him into the living room (probably not the best thing to do, but I had no clue he was having a seizure), crying the whole way. My mom had no idea, either. I called 911. We waited while Javy's whole body twitched to it's own unique rhythm. I'm pretty sure that was the longest five minutes of my life.
The ambulance came and Javy's body kept twitching. I heard the EMT say something about a seizure. Seems like I rode in the front of the ambulance, but I don't remember. I remember it was raining and windy and we had to go around some fallen limbs in the road. But what is burned in my memory is what happened when we got to Huntsville Hospital's ER. I came around to the back of the ambulance, Javy's body had stopped twitching and he was crying. The EMT handed him to me, but he looked at me like I was a stranger and just screamed. Nothing I could do could console him. Later that morning, he fell into a deep sleep and woke up a few hours later, like nothing had ever happened.
What we learned later after spending some time in the ER is that Javy had a grand mal seizure or tonic clonic seizure, as they are known now. The reason he didn't know who I was after the seizure was because he was going through a postictal state which is marked by confusion and memory loss. It's kind of like the brain's way of healing itself from the trauma of the seizure. Sometimes I wish I could go through a postictal state.
Eventually, we became old pros of seizures. They usually occurred while he was sleeping, in the early morning hours. They were controlled pretty well by meds. When he started outgrowing his dosage, he would start having them, again. Then a couple of years went by and he never had any and the good neurologist decided it was futile to take medication, anymore.
Not taking medication was a huge relief. First of all, it freed up a few extra dollars and it freed up our mind. Javy doesn't take medicine easy, so we always had to plan, keeping something on hand that Javy would swallow his pills with. Jelly works best. So if we wanted to go out or travel, we had to carry the jar of jelly with us. Secondly, we found that after the medication had left his system, Javy became a new child. He was much more alert, making eye contact more. He began pushing his wheelchair around on his own. There were less episodes of him just slumping over in his chair, giggling uncontrollably.
I'm glad that we believe in enjoying the moment, because they're back! It was nice while it lasted. Why are they back? Well, that's a good question. Javy's pediatrician says that sometime children who seem to outgrow seizures starting having them again when they become adolescents. Yes, we can all thank hormones!
Javy is back on Keppra and today was his first day on his full dosage. He had three in less than a month. One was a tonic clonic, just like the old days. The other two were kind of new. It was like an absence seizure, but his tongue twitched. My goal is to keep his life as normal as possible and try not to have the attitude of, "Oh well, he's on seizure meds so if he's a little tired that's understandable." I don't know if it will work, but we gotta stay positive. He's made great strides and I don't want him to lose any of it. Only time will tell....
Javy started having seizures, again. He almost made four years since his last seizure. In fact, in July of 2010, he had an EEG and was found to have no seizure activity so the doctor took him off seizure meds, entirely.
Seizures suck, in case, you didn't know. Javy had his first seizure in August 2005, or the first seizure I had ever witnessed. It was the day after Hurricane Katrina hit New Orleans. We were in Northern Alabama at the time and we had storms all night, from the remnants of Katrina. I had woken up early, concerned about the possibility of severe weather. Around 5:30am, I was passing by Javy's room on my way to the bathroom when I heard Javy make a grunting noise. I went in to check on him. His eyes were half open and his tongue was sticking out with foam coming out of his mouth. His arms and his legs were moving up and down. I had no idea what was going on, I thought he was dying. I lifted him off the bed and carried him into the living room (probably not the best thing to do, but I had no clue he was having a seizure), crying the whole way. My mom had no idea, either. I called 911. We waited while Javy's whole body twitched to it's own unique rhythm. I'm pretty sure that was the longest five minutes of my life.
The ambulance came and Javy's body kept twitching. I heard the EMT say something about a seizure. Seems like I rode in the front of the ambulance, but I don't remember. I remember it was raining and windy and we had to go around some fallen limbs in the road. But what is burned in my memory is what happened when we got to Huntsville Hospital's ER. I came around to the back of the ambulance, Javy's body had stopped twitching and he was crying. The EMT handed him to me, but he looked at me like I was a stranger and just screamed. Nothing I could do could console him. Later that morning, he fell into a deep sleep and woke up a few hours later, like nothing had ever happened.
What we learned later after spending some time in the ER is that Javy had a grand mal seizure or tonic clonic seizure, as they are known now. The reason he didn't know who I was after the seizure was because he was going through a postictal state which is marked by confusion and memory loss. It's kind of like the brain's way of healing itself from the trauma of the seizure. Sometimes I wish I could go through a postictal state.
Eventually, we became old pros of seizures. They usually occurred while he was sleeping, in the early morning hours. They were controlled pretty well by meds. When he started outgrowing his dosage, he would start having them, again. Then a couple of years went by and he never had any and the good neurologist decided it was futile to take medication, anymore.
Not taking medication was a huge relief. First of all, it freed up a few extra dollars and it freed up our mind. Javy doesn't take medicine easy, so we always had to plan, keeping something on hand that Javy would swallow his pills with. Jelly works best. So if we wanted to go out or travel, we had to carry the jar of jelly with us. Secondly, we found that after the medication had left his system, Javy became a new child. He was much more alert, making eye contact more. He began pushing his wheelchair around on his own. There were less episodes of him just slumping over in his chair, giggling uncontrollably.
I'm glad that we believe in enjoying the moment, because they're back! It was nice while it lasted. Why are they back? Well, that's a good question. Javy's pediatrician says that sometime children who seem to outgrow seizures starting having them again when they become adolescents. Yes, we can all thank hormones!
Javy is back on Keppra and today was his first day on his full dosage. He had three in less than a month. One was a tonic clonic, just like the old days. The other two were kind of new. It was like an absence seizure, but his tongue twitched. My goal is to keep his life as normal as possible and try not to have the attitude of, "Oh well, he's on seizure meds so if he's a little tired that's understandable." I don't know if it will work, but we gotta stay positive. He's made great strides and I don't want him to lose any of it. Only time will tell....
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