When my daughter had her seizures last April the doctors started her on an anti-seizure medication called Phenobarbatol. The doctors explained that this medication is a barbituate and a controlled substance. They said it could cause drowsiness or insomnia, irritability and some other minor side effects, but that it is safe and had been in use for many years.
I'm not terribly familiar with prescription medicines, but it seemed to me that this particular prescription kept her entire brain in somewhat of a dampened state and that's how it kept her from having any further seizures. But it was that dampened state that seemed to be the problem. My daughter was on this stuff for over a year to ensure she didn't have a relapse and I really feel like she was held back just because she was so out of it most of the time. She would respond to her surroundings and interact with her environment, but it was almost like she was in a dream-like state. She just wasn't all there.
Thankfully her wonderful pediatrician didn't force her to take any more of this than she had to. As my daughter's weight increased he kept the dosage the same or only slightly increased it. That allowed her to be in a gentle weaning process throughout the year.
However, it was when we took my little one completely off the medication that I saw so much of a difference. She seemed so much more awake and interactive. She played with her toys more, paid more attention to her surroundings and listened more when people talked. Since she got off the medicine back in May, she's learned to turn circles while sitting, she's more vocal, and she's started saying one or two words either with speaking or signing. I don't think this burst of progress is just coincidental. It's just that she's now able to use all the faculties of her mind to the full extent.
I'm very grateful that Phenobarbatol kept my daughter from having any more seizures, but I'm even more grateful that the medication is now in her past. I know there are other anti-seizure medications available for people with epilepsy and so forth, but they're often not used in pediatric cases because they're newer and possibly not as safe. I'd really like to see more studies being done, so children with seizures aren't so drugged up during their important formative years. It's so important that they have their faculties about them as they explore the world they've just been born into. I hope there will be some good progress in the near future. I know it would really help children everywhere.
Showing posts with label Seizures. Show all posts
Showing posts with label Seizures. Show all posts
Thursday, July 21, 2005
Sunday, July 17, 2005
The Diagnosis
My daughter had those seizures that hospitalized her for a few days last April. Try as they might, her doctors could not find a cause for them. Many tests were given and some took longer than her hospital stay to get results back. Such was the case with the DNA tests.
One day in June of last year, a team of genetics doctors from the local university hospital asked my wife and I to join them for a meeting. I assumed this was an appointment they'd requested to be able to run additional tests. I was totally wrong. When we sat down with them the doctors explained that they had seen an anomaly in the DNA that was collected back in April.
They began to explain to my wife and I about our daughter's syndrome in much the same way that I've described it here in previous posts. They told us of her mental and physical handicaps. It was almost too much to handle, especially going into the meeting without any emotional preparation for what we were going to hear.
I had planned to go into work after the appointment was complete, but was so overcome, I took the day off to be with my little one and my wife as we came to grips with what we had learned and went through the process of informing our close family members.
I'm not sure if all parent's do this, but I had already envisioned what my daughter would be like before she was born. I had seen so many monumental accomplishments in her life before I'd actually seen her at all. I had convinced myself that she'd be intelligent, athletic, attractive, and so on. Obviously after the meeting with the geneticists, this vision of mine had been completely thrown into chaos. I felt like I had lost my daughter because all of the plans I had made in my mind had been shattered.
But there was something I overlooked. Despite the passing of whatever plans I had made, I still had my daughter. My little one was going to be the person that she was meant to be, not the person that I had envisioned. It was a difficult lesson to have pushed on my so early and so abruptly, but I believe it's one that all parents must learn at some point. We as parents may have some grand design for our child's life, but it's not up to us. Our children turn out as God intends. We can choose to be an instrument in shaping that child, but we absolutely cannot mold that child into something they're not supposed to be.
It took me a while to work through that. It's been over a year since "The Diagnosis". Today I'm able to appreciate my little angel for who she is, not what I had envisioned she'd be. Even though she's got challenges, she's a happy little individual who's making great progress every day. And best of all, it's the progress she needs to make and not the progress I'm trying to force her to make. Thanks mostly to my daughter's disabilities I believe I've overcome the parental tendency to try to live life through my child. I don't think I'll fall into the trap of pushing her to be more than I was in some crazy quest to prove myself. I'm grateful for that. Just another profound lesson I've been taught by this little person in my life who doesn't even speak yet.
One day in June of last year, a team of genetics doctors from the local university hospital asked my wife and I to join them for a meeting. I assumed this was an appointment they'd requested to be able to run additional tests. I was totally wrong. When we sat down with them the doctors explained that they had seen an anomaly in the DNA that was collected back in April.
They began to explain to my wife and I about our daughter's syndrome in much the same way that I've described it here in previous posts. They told us of her mental and physical handicaps. It was almost too much to handle, especially going into the meeting without any emotional preparation for what we were going to hear.
I had planned to go into work after the appointment was complete, but was so overcome, I took the day off to be with my little one and my wife as we came to grips with what we had learned and went through the process of informing our close family members.
I'm not sure if all parent's do this, but I had already envisioned what my daughter would be like before she was born. I had seen so many monumental accomplishments in her life before I'd actually seen her at all. I had convinced myself that she'd be intelligent, athletic, attractive, and so on. Obviously after the meeting with the geneticists, this vision of mine had been completely thrown into chaos. I felt like I had lost my daughter because all of the plans I had made in my mind had been shattered.
But there was something I overlooked. Despite the passing of whatever plans I had made, I still had my daughter. My little one was going to be the person that she was meant to be, not the person that I had envisioned. It was a difficult lesson to have pushed on my so early and so abruptly, but I believe it's one that all parents must learn at some point. We as parents may have some grand design for our child's life, but it's not up to us. Our children turn out as God intends. We can choose to be an instrument in shaping that child, but we absolutely cannot mold that child into something they're not supposed to be.
It took me a while to work through that. It's been over a year since "The Diagnosis". Today I'm able to appreciate my little angel for who she is, not what I had envisioned she'd be. Even though she's got challenges, she's a happy little individual who's making great progress every day. And best of all, it's the progress she needs to make and not the progress I'm trying to force her to make. Thanks mostly to my daughter's disabilities I believe I've overcome the parental tendency to try to live life through my child. I don't think I'll fall into the trap of pushing her to be more than I was in some crazy quest to prove myself. I'm grateful for that. Just another profound lesson I've been taught by this little person in my life who doesn't even speak yet.
Saturday, July 09, 2005
Search and Seizures
After about four months of having my little one home from the hospital life seemed like it was getting pretty normal. She wasn’t as strong or big as other people’s kids but those were the only indications that something was not normal.
Then in mid April out of the blue my little girl started having full-body seizures. The first time she had one I was changing her diaper. She just clenched up right there on the changing table and her arms and legs started twitching. Her eyes stayed straight ahead and she just shook for just a short amount of time. It ended and she seemed tired so I let her sleep. It seemed like an isolated incident so I didn’t really consider taking her to the doctors.
A couple of days later my wife was feeding her and I was on my way out the door. I had gotten the door closed and taken a few steps when I heard my wife scream and call for me. I darted back inside to find her holding our daughter, again all clenched and shaking. This time the seizure seemed like it lasted forever. We were both pretty frightened.
My wife called the pediatrician’s office and the said that we should head straight for the Emergency Room of the local children’s hospital. To a couple of freaked out first-time parents, it seemed like a pretty good idea to us!
We raced to the hospital where we spent about four hours in the emergency room. First the medical team made sure they weren’t fever-induced seizures, and that she hadn’t eaten anything unusual. She hadn’t. Next they wanted to rule out meningitis. The best way to find that out is to have a spinal tap. So my wife and I watched as one nurse pinned our daughter and another feed a large needle in between two of the vertebrae in her back. My little girl screamed a cry of pain and confusion that I’d never heard before. Luckily is wasn’t long before they had enough fluid to run their tests and they left her alone.
While we were there in the ER, my little angel had another seizure and the nurses were able to help assess what was going on. This one only affected part of her body, but they did confirm that it was definitely a seizure.
After four hours went by, there were still no answers so they admitted my daughter and put her in intensive care on the fourth floor of the hospital. She was there for four days, which sure beats a week like the previous time but it wasn’t much fun. During that time several teams of physicians helped us in trying to find the cause of the seizures. First they did blood work to rule out infections and meningitis.
Next the neurologist came to look at her brain’s structure and function. She had an MRI and an EEG. By the way, if you’re looking for an entertaining test to have your kids take, try an EEG. They apply little leads to all kinds of places on the child’s head to measure brain activity. Each lead has a different color wire attached, so when they’re done wiring the child up, they have rainbow wire hair. It’s kind of cool.
Anyway, the neurologists struck out just like the blood work guys did. The next folks to come and look for answers were the geneticists. They asked if my wife and I were cousins or if any of our ancestors had been married to relatives. The answer was no, of course, so they proceeded to take some blood in order to run a battery of genetic tests looking for the cause of my daughter’s twitches. These tests take weeks and even months to complete.
Meanwhile, my little angel was running down. She was tired of being stuck with needles, tested, awakened in the night by so many doctors and nurses, and having IVs in both of her little hands. At last they released her to come home with us again. We left the children’s hospital very glad to be leaving but empty handed when it came to answers.
Even though a cause had not been determined for my little girl’s seizures, her pediatrician was able to prescribe an anti-seizure medication that was very effective. It’s called Phenobarbatol and it merits a post of its own sometime.
Once again, my family was back under one roof and though we still didn’t know what was wrong we all did our best to put the questions out of our heads and try to carry on a normal life. My daughter made this easy. In spite of the terrible times she’s had in the hospital she remains a very happy little girl. In spite of all the people poking and testing her, she’s still a people person and loves to give you a hug even if she’s never seen you before. It’s amazing to me to see such strength and tranquility in such a little person. It’s such a blessing to have her in our home. I learn lessons from her every day.
Then in mid April out of the blue my little girl started having full-body seizures. The first time she had one I was changing her diaper. She just clenched up right there on the changing table and her arms and legs started twitching. Her eyes stayed straight ahead and she just shook for just a short amount of time. It ended and she seemed tired so I let her sleep. It seemed like an isolated incident so I didn’t really consider taking her to the doctors.
A couple of days later my wife was feeding her and I was on my way out the door. I had gotten the door closed and taken a few steps when I heard my wife scream and call for me. I darted back inside to find her holding our daughter, again all clenched and shaking. This time the seizure seemed like it lasted forever. We were both pretty frightened.
My wife called the pediatrician’s office and the said that we should head straight for the Emergency Room of the local children’s hospital. To a couple of freaked out first-time parents, it seemed like a pretty good idea to us!
We raced to the hospital where we spent about four hours in the emergency room. First the medical team made sure they weren’t fever-induced seizures, and that she hadn’t eaten anything unusual. She hadn’t. Next they wanted to rule out meningitis. The best way to find that out is to have a spinal tap. So my wife and I watched as one nurse pinned our daughter and another feed a large needle in between two of the vertebrae in her back. My little girl screamed a cry of pain and confusion that I’d never heard before. Luckily is wasn’t long before they had enough fluid to run their tests and they left her alone.
While we were there in the ER, my little angel had another seizure and the nurses were able to help assess what was going on. This one only affected part of her body, but they did confirm that it was definitely a seizure.
After four hours went by, there were still no answers so they admitted my daughter and put her in intensive care on the fourth floor of the hospital. She was there for four days, which sure beats a week like the previous time but it wasn’t much fun. During that time several teams of physicians helped us in trying to find the cause of the seizures. First they did blood work to rule out infections and meningitis.
Next the neurologist came to look at her brain’s structure and function. She had an MRI and an EEG. By the way, if you’re looking for an entertaining test to have your kids take, try an EEG. They apply little leads to all kinds of places on the child’s head to measure brain activity. Each lead has a different color wire attached, so when they’re done wiring the child up, they have rainbow wire hair. It’s kind of cool.
Anyway, the neurologists struck out just like the blood work guys did. The next folks to come and look for answers were the geneticists. They asked if my wife and I were cousins or if any of our ancestors had been married to relatives. The answer was no, of course, so they proceeded to take some blood in order to run a battery of genetic tests looking for the cause of my daughter’s twitches. These tests take weeks and even months to complete.
Meanwhile, my little angel was running down. She was tired of being stuck with needles, tested, awakened in the night by so many doctors and nurses, and having IVs in both of her little hands. At last they released her to come home with us again. We left the children’s hospital very glad to be leaving but empty handed when it came to answers.
Even though a cause had not been determined for my little girl’s seizures, her pediatrician was able to prescribe an anti-seizure medication that was very effective. It’s called Phenobarbatol and it merits a post of its own sometime.
Once again, my family was back under one roof and though we still didn’t know what was wrong we all did our best to put the questions out of our heads and try to carry on a normal life. My daughter made this easy. In spite of the terrible times she’s had in the hospital she remains a very happy little girl. In spite of all the people poking and testing her, she’s still a people person and loves to give you a hug even if she’s never seen you before. It’s amazing to me to see such strength and tranquility in such a little person. It’s such a blessing to have her in our home. I learn lessons from her every day.
Subscribe to:
Posts (Atom)