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Hello all,

I am new to learning about seizures. My daughter who is 23 months old had her first and only seizure on 2/28. She woke up early in the morning seizing, unresponsive, rigid body, left arm and leg twitching/jerking, gaze fixed to the left, mouth sucking. The seizure was prolonged, upward of 40 minutes. We rushed her to the hospital where she was monitored for 36 hours with no further activity. She has no significant health history and has been a healthy and normally developing child. We saw a neurologist in the hospital who ordered an EEG to be done several weeks after the seizure. The medical team found no direct cause of the seizure, and it was afebrile. We did an EEG at 18 days after the seizure, and it showed some slowing of waves on the right side. Her CT was clear. The nurse practitioner we saw to describe the results said that the doc who read the EEG was prepared to put her on Keppra, and was on the fence of giving her a diagnosis. At the appointment my husband and I were very surprised that the doc was willing to jump to medicine and diagnosis so quickly (after only one seizure, no epileptic spikes in the EEG, normal development, etc). In addition, he has never even met or examined my daughter. We are going to see another doctor to hopefully do another EEG and a little more in depth follow up, but I'm looking for advice, ideas, etc. I'm scared of her having another seizure, but I don't want to medicate unless necessary. When I try to read about the slowed wave activity, I can't find much. I would welcome any input! Thank you.

Comments

The length of time in the

Submitted by just_joe on Sat, 2015-04-11 - 15:34

The length of time in the seizure along with the information found on the EEG is enough to come up with a diagnosis. We did an EEG at 18 days after the seizure, and it showed some slowing of waves on the right side. If she has had 1 seizure which you posted along with the length it was then think a little. There will be time before you get to see another neurologist. Then time before the EEG is done. The longer a person waits the stronger the seizures will be. They will also be more frequent. I know I had been written up in class for day dreaming in class for a little over a year. I had my right hand feel weird or numb at times and those feelings became more frequent. It wasn't until I had a grand mal and was later diagnosed with epilepsy and testing was done that we connected the dots. Absence seizures and focal seizures look like the person is day dreaming.As for keppra. It has become one of the go to medications to control seizures. It not only reduced the number of seizures I was having. It also shortened the time in them. A seizure that used to be 2-8 minutes and 15-45 minutes to get back to normal is now 2-5 seconds and the get back to normal time is about the same. I could have a seizure while discussing something with you and unless you knew what to look for you would not know I had it.Also understand that a person can have several EEG's all come back normal. Personally I had 20-25 come back normal. The EEG that didn't is the one they found abnormalities (spikes or waves) in. By knowing where they cam from the neurologist then looked closer at the neuroangeo-gram (the MRI of the 1960's) They had already said it was normal too. The closer look found scared brain tissue. What was her CT scan and if it was the head did it show everything in her brain? An MRI will show the brain and its construction. It can be looked at to see if there are any deformities or other things. I hope this helps and your daughter gets the assistance she needs and she gets seizure freeJoe

The length of time in the seizure along with the information found on the EEG is enough to come up with a diagnosis.  We did an EEG at 18 days after the seizure, and it showed some slowing of waves on the right side.  If she has had 1 seizure which you posted along with the length it was then think a little. There will be time before you get to see another neurologist. Then time before the EEG is done. The longer a person waits the stronger the seizures will be. They will also be more frequent. I know I had been written up in class for day dreaming in class for a little over a year. I had my right hand feel weird or numb at times and those feelings became more frequent. It wasn't until I had a grand mal and was later diagnosed with epilepsy and testing was done that we connected the dots. Absence seizures and focal seizures look like the person is day dreaming.As for keppra. It has become one of the go to medications to control seizures. It not only reduced the number of seizures I was having. It also shortened the time in them. A seizure that used to be 2-8 minutes and 15-45 minutes to get back to normal is now 2-5 seconds and the get back to normal time is about the same. I could have a seizure while discussing something with you and unless you knew what to look for you would not know I had it.Also understand that a person can have several EEG's all come back normal. Personally I had 20-25 come back normal. The EEG that didn't is the one they found abnormalities (spikes or waves) in. By knowing where they cam from the neurologist then looked closer at the neuroangeo-gram (the MRI of the 1960's) They had already said it was normal too. The closer look found scared brain tissue. What was her CT scan and if it was the head did it show everything in her brain?  An MRI will show the brain and its construction. It can be looked at to see if there are any deformities or other things. I hope this helps and your daughter gets the assistance she needs and she gets seizure freeJoe

The length of time in the seizure along with the information found on the EEG is enough to come up with a diagnosis. We did an EEG at 18 days after the seizure, and it showed some slowing of waves on the right side. If she has had 1 seizure which you posted along with the length it was then think a little. There will be time before you get to see another neurologist. Then time before the EEG is done. The longer a person waits the stronger the seizures will be. They will also be more frequent. I know I had been written up in class for day dreaming in class for a little over a year. I had my right hand feel weird or numb at times and those feelings became more frequent. It wasn't until I had a grand mal and was later diagnosed with epilepsy and testing was done that we connected the dots. Absence seizures and focal seizures look like the person is day dreaming.As for keppra. It has become one of the go to medications to control seizures. It not only reduced the number of seizures I was having. It also shortened the time in them. A seizure that used to be 2-8 minutes and 15-45 minutes to get back to normal is now 2-5 seconds and the get back to normal time is about the same. I could have a seizure while discussing something with you and unless you knew what to look for you would not know I had it.Also understand that a person can have several EEG's all come back normal. Personally I had 20-25 come back normal. The EEG that didn't is the one they found abnormalities (spikes or waves) in. By knowing where they cam from the neurologist then looked closer at the neuroangeo-gram (the MRI of the 1960's) They had already said it was normal too. The closer look found scared brain tissue. What was her CT scan and if it was the head did it show everything in her brain? An MRI will show the brain and its construction. It can be looked at to see if there are any deformities or other things. I hope this helps and your daughter gets the assistance she needs and she gets seizure freeJoe

Did I understand that a

Submitted by sjowarner@gmail.com on Mon, 2015-05-04 - 17:25

Did I understand that a practitioner delivered the follow-up to the testing? If so, that seems neglectful. IMO, no practitioner should be delivering that news to a parent. I respect and value the role of competent NPs in our medical profession, but would never consider an NP the appropriate source for relaying a physician's comments following testing, especially when further action is considered. That said, here's my two cents (after 24 years of a child with e, I have a fair amount of "wish I hads", and here are a couple: I would suggest you find the nearest level four epilepsy center. See if they will accept you as a patient of one of the physicians without referral. if so, book an appointment. It may be far in advance. Take it anyway. If you need a referral get the current neuro to do a referral, or even better, see if their office will make the appointment for you -- often they can pull strings to get you in to see that epilepsy specialists sooner than you as the parent/patient can. Seeing a second general neuro may or may not give you good info. I've found that far too many neuros have limited knowledge in epilepsy and its treatment. They do OK as a gatekeeper, but the diagnosis and medication really are best handled by the experts. As for whether to medicate or not at present, the physician who ordered tests really should meet with you, give you a good picture of the pros and cons, and give you an opportunity to ask lots of questions. It wouldn't be clear to me that your child was having a seizure for that long, or if perhaps some of the time he was actually post ictal. When my daughter had her earliest seizures, her post ictal stage was marked by inability to speak and lack of surroundings awareness. However, eeg reading didn't show seizure spikes during that stage. Mainly, I just wanted to encourage you to do two things: request a face to face conference with the neuro who ordered the tests, and seek input from experts at a level four epilepsy center. We didn't do that, and often I feel regret that I failed to do so. My daughter's outcome could have possibly been less limiting had we not stayed so long with general neuros as our source of treatment.

Did I understand that a practitioner delivered the follow-up to the testing? If so, that seems neglectful. IMO, no practitioner should be delivering that news to a parent. I respect and value the role of competent NPs in our medical profession, but would never consider an NP the appropriate source for relaying a physician's comments following testing, especially when further action is considered. That said, here's my two cents (after 24 years of a child with e, I have a fair amount of "wish I hads", and here are a couple: I would suggest you find the nearest level four epilepsy center. See if they will accept you as a patient of one of the physicians without referral. if so, book an appointment. It may be far in advance. Take it anyway. If you need a referral get the current neuro to do a referral, or even better, see if their office will make the appointment for you -- often they can pull strings to get you in to see that epilepsy specialists sooner than you as the parent/patient can. Seeing a second general neuro may or may not give you good info. I've found that far too many neuros have limited knowledge in epilepsy and its treatment. They do OK as a gatekeeper, but the diagnosis and medication really are best handled by the experts. As for whether to medicate or not at present, the physician who ordered tests really should meet with you, give you a good picture of the pros and cons, and give you an opportunity to ask lots of questions. It wouldn't be clear to me that your child was having a seizure for that long, or if perhaps some of the time he was actually post ictal. When my daughter had her earliest seizures, her post ictal stage was marked by inability to speak and lack of surroundings awareness. However, eeg reading didn't show seizure spikes during that stage. Mainly, I just wanted to encourage you to do two things: request a face to face conference with the neuro who ordered the tests, and seek input from experts at a level four epilepsy center. We didn't do that, and often I feel regret that I failed to do so. My daughter's outcome could have possibly been less limiting had we not stayed so long with general neuros as our source of treatment. 

Did I understand that a practitioner delivered the follow-up to the testing? If so, that seems neglectful. IMO, no practitioner should be delivering that news to a parent. I respect and value the role of competent NPs in our medical profession, but would never consider an NP the appropriate source for relaying a physician's comments following testing, especially when further action is considered. That said, here's my two cents (after 24 years of a child with e, I have a fair amount of "wish I hads", and here are a couple: I would suggest you find the nearest level four epilepsy center. See if they will accept you as a patient of one of the physicians without referral. if so, book an appointment. It may be far in advance. Take it anyway. If you need a referral get the current neuro to do a referral, or even better, see if their office will make the appointment for you -- often they can pull strings to get you in to see that epilepsy specialists sooner than you as the parent/patient can. Seeing a second general neuro may or may not give you good info. I've found that far too many neuros have limited knowledge in epilepsy and its treatment. They do OK as a gatekeeper, but the diagnosis and medication really are best handled by the experts. As for whether to medicate or not at present, the physician who ordered tests really should meet with you, give you a good picture of the pros and cons, and give you an opportunity to ask lots of questions. It wouldn't be clear to me that your child was having a seizure for that long, or if perhaps some of the time he was actually post ictal. When my daughter had her earliest seizures, her post ictal stage was marked by inability to speak and lack of surroundings awareness. However, eeg reading didn't show seizure spikes during that stage. Mainly, I just wanted to encourage you to do two things: request a face to face conference with the neuro who ordered the tests, and seek input from experts at a level four epilepsy center. We didn't do that, and often I feel regret that I failed to do so. My daughter's outcome could have possibly been less limiting had we not stayed so long with general neuros as our source of treatment.