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Hello everyone,

My 17 y.o. daughter began having seizures 2 years ago. They were 30 minute grand mal seizures. She was finally put on Keppra this past April (2014). Her seizures are now under 10 minutes, so I know the Keppra has helped. The Neuro has not difinitely issued a diagnosis of Epilepsy, as she is still unsure these are epileptic. My daughter has had to quit all sports, as seizures would occur on the soccer field when her breathing became hard and fast. I am frustrated. Let me add that my daughter was born with a congenital heart defect and had open heart surgery at age 4. She has a residual arrymythia as a result of this. Her seizures are preceeded by a stomache and nausea most of the time, and lately with the last 6 seizures she has smelled bleach right before. She will start hyperventilating and then launch into a seizure most of the time. Has anyone else had this happen with their child? As a mom, I am convinced these are epileptic and I also think there is some underlying cause. I sometimes wonder if they are not cardiac related. I am frustrated as I feel her doctor does not listen to my concerns. Any advice or info would be greatly appreciated!

Comments

All it used to take to

Submitted by just_joe on Fri, 2014-09-05 - 16:46

All it used to take to diagnosis epilepsy was 2 seizures. They could do tests and most od the time they all came back normal.It it were my Mom in your position I do know she would be having second thought about the doctor. I was diagnosed with epilepsy long before I ever saw a neurologist. I had taken 20-25 different EEG's all came back normal.There are several things that can cause seizures in people and not all are epilepsy. I have a friend whos heart medication can cause seizures. I have another whos diabeties can cause seizures. So yes a person can have a seizure but not all will look like a grand mal seizure. I also know that it may not be the coaches but the schools regulations keeping your daughter from particpations in sports. Been there Done that. Back when I wanted to participate it was my partents coaches knew I could play and do anything the other kids could do. Back then I had focal seizures that generalized. Those seizures looked like a grand mal and were also just as bad. I needed a little assistance after the seizure but I was back in class in the next period. What Mom would do is video me in a seizure and gather up all the information obtained from the doctors and taking it to another neurologist (specializing in epilepsy) and talk to him. In other words a way to get a diagnosis on your daughter.As for keppra it is the best medications I have ever used in stopping my seizures. It has reduced the number of seizures I was having along with the time in the seizures. While I have been blessed not to have had a convulsive seizure since 1970 I still have partial and focal seizures from time to time. Those seizures used to ne 2-10 minutes long. The time to get back to normal was about 15-45 minutes. Now those seizures are 5-8 seconds long and the time to focus is 5-10 seconds. I can have one while standing in a group of people having a conversation and no one would know I had one unless they knew what to look for and saw it in those seconds. I had one while talking to my PCP and he was amazed since I had stopped talking and finishes the sentence. I asked what he thought the dealy was when I was talking. He said I was gathering other words to use or putting the sentence together. When I told him it was a seizure his eyes bugged. Yes newer medications are better and they shorten the time in the seizure as well as reduce the number of seizures. I hope this helps and you get the assistance your daughter needs. Joe P>S> Carolyn is right about absence seizures and people not knowing about them. I had been written up for day dreaming in class when in reality those day dreams were absence seizures (petite mal seizures)

All it used to take to diagnosis epilepsy was 2 seizures. They could do tests and most od the time they all came back normal.It it were my Mom in your position I do know she would be having second thought about the doctor. I was diagnosed with epilepsy long before I ever saw a neurologist. I had taken 20-25 different EEG's all came back normal.There are several things that can cause seizures in people and not all are epilepsy. I have a friend whos heart medication can cause seizures. I have another whos diabeties can cause seizures. So yes a person can have a seizure but not all will look like a grand mal seizure. I also know that it may not be the coaches but the schools regulations keeping your daughter from particpations in sports. Been there Done that. Back when I wanted to participate it was my partents coaches knew I could play and do anything the other kids could do. Back then I had focal seizures that generalized. Those seizures looked like a grand mal and were also just as bad. I needed a little assistance after the seizure but I was back in class in the next period. What Mom would do is video me in a seizure and gather up all the information obtained from the doctors and taking it to another neurologist (specializing in epilepsy) and talk to him. In other words a way to get a diagnosis on your daughter.As for keppra it is the best medications I have ever used in stopping my seizures. It has reduced the number of seizures I was having along with the time in the seizures. While I have been blessed not to have had a convulsive seizure since 1970 I still have partial and focal seizures from time to time. Those seizures used to ne 2-10 minutes long. The time to get back to normal was about 15-45 minutes. Now those seizures are 5-8 seconds long and the time to focus is 5-10 seconds. I can have one while standing in a group of people having a conversation and no one would know I had one unless they knew what to look for and saw it in those seconds. I had one while talking to my PCP and he was amazed since I had stopped talking and finishes the sentence. I asked what he thought the dealy was when I was talking. He said I was gathering other words to use or putting the sentence together. When I told him it was a seizure his eyes bugged. Yes newer medications are better and they shorten the time in the seizure as well as reduce the number of seizures. I hope this helps and you get the assistance your daughter needs. Joe P>S> Carolyn is right about absence seizures and people not knowing about them. I had been written up for day dreaming in class when in reality those day dreams were absence seizures (petite mal seizures)

All it used to take to diagnosis epilepsy was 2 seizures. They could do tests and most od the time they all came back normal.It it were my Mom in your position I do know she would be having second thought about the doctor. I was diagnosed with epilepsy long before I ever saw a neurologist. I had taken 20-25 different EEG's all came back normal.There are several things that can cause seizures in people and not all are epilepsy. I have a friend whos heart medication can cause seizures. I have another whos diabeties can cause seizures. So yes a person can have a seizure but not all will look like a grand mal seizure. I also know that it may not be the coaches but the schools regulations keeping your daughter from particpations in sports. Been there Done that. Back when I wanted to participate it was my partents coaches knew I could play and do anything the other kids could do. Back then I had focal seizures that generalized. Those seizures looked like a grand mal and were also just as bad. I needed a little assistance after the seizure but I was back in class in the next period. What Mom would do is video me in a seizure and gather up all the information obtained from the doctors and taking it to another neurologist (specializing in epilepsy) and talk to him. In other words a way to get a diagnosis on your daughter.As for keppra it is the best medications I have ever used in stopping my seizures. It has reduced the number of seizures I was having along with the time in the seizures. While I have been blessed not to have had a convulsive seizure since 1970 I still have partial and focal seizures from time to time. Those seizures used to ne 2-10 minutes long. The time to get back to normal was about 15-45 minutes. Now those seizures are 5-8 seconds long and the time to focus is 5-10 seconds. I can have one while standing in a group of people having a conversation and no one would know I had one unless they knew what to look for and saw it in those seconds. I had one while talking to my PCP and he was amazed since I had stopped talking and finishes the sentence. I asked what he thought the dealy was when I was talking. He said I was gathering other words to use or putting the sentence together. When I told him it was a seizure his eyes bugged. Yes newer medications are better and they shorten the time in the seizure as well as reduce the number of seizures. I hope this helps and you get the assistance your daughter needs. Joe P>S> Carolyn is right about absence seizures and people not knowing about them. I had been written up for day dreaming in class when in reality those day dreams were absence seizures (petite mal seizures)

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Submitted by Anonymous on Sat, 2014-09-06 - 09:16

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