First Seizure

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Hello, My son is 16, he had first seizure at school about 3 1/2 weeks ago, he was in cafeteria sitting at table watching his phone and fell to the floor convulsing. He hit his face on floor and had a possible broken nose. They took him to hospital in ambulance. He had an EEG which showed focal spikes in right front temporal area. Neurologist believes he will most likely have another seizure anytime within 6 months and that we should start medication. He already has ADHD and is on medication for that already. So I am hesitant to start another medication. The suggestions were Depakote, Keppra and Lamictal. I researched reviews for these meds and am very worried about side effects: memory loss, depression, raging, suicidal thoughts, hair loss, weight gain, bone thinning, kidney stones, tremors, shakiness, dizziness, double vision, slurred speech. I am worried these meds may give him more problems and in the back of my mind I keep thinking, what if he would never have another seizure and I put him on one of these meds and give him more problems. I just can't believe an extremely health 16 year old boy would start having seizures out of the blue. He is scheduled for an MRI with contrast in about 2 weeks, though the Neurologist doesn't believe we will see any problems with it. I just don't know what to do, I worry every time he leaves the house, will he have another one and hurt himself and I will regret not putting him on meds for it or put him on meds and regret that later if terrible side effects. Any suggestions or input on these medications or anything else would be extremely appreciated!

Comments

So I hear you Tina. You're

Submitted by Jazz101 on Tue, 2019-02-05 - 19:05

So I hear you Tina. You're pondering quite a few things, a process that is pretty natural. And given your son is 16, well, I can understand you seeing what you are seeing at this time; pondering the things you are pondering.Decisions, especially a parental decision, probably involves so many different things. For the record, I am not a parent so I can't quite get in the minds of parents. As my sister tells me, it's a unique job. So that part I get. Decisions sometimes are pretty catchy. And your writing shows just how catchy yours is. After all, to quote you; "what if he would never have another seizure and I put him on one of these meds and give him more problems."That is a natural question to ask yourself. But what helps with decisions is looking at both sides. So, in this case; "what if he does have another seizure?" I think asking both questions and answering both can help you better balance your decision. In terms of medication? They are unique. Sometimes what works well on one person doesn't necessarily work well on another. As a result, the only way to really find out is to not guess. I'll give you a great example. I once tried a medicine called Vimpat. Vimpat is pretty effective on someone I know. But when I tried it, the result was the opposite. I guess what I am trying to say to you Tina is that taking on Epilepsy comes down to two things. "Little guessing" and "patience." The upside is that neurology has advanced significantly such that even if the first med doesn't seem that effective they can edit it, meaning either change it or add another to it.At this time I am in the process of changing meds. I made sure I spoke with my neurologist about two other names just incase the one we are currently trying wasn't going to be effective. And that is how we approached it. That said, so far it has been pretty effective. Epilepsy is a neurological condition that can happen to anyone. It has little to do with how healthy we seem in other areas. This his why it is important to contextualize your son's diagnosis. That said, I can understand the process your are going through given you are a parent. As I have said, my sister made it known to me that I probably have an idea of what it's like to be a parent but I can't argue that I know what it's like to be a parent. As a result, the way you currently feel has to be so unique given you are a parent. My only advice to you is try to look at both sides -- medicine or no medicine. There is a site I will refer you too. It is great source of spelling out back-up information on medication. You just have to type in the name. The site is www.medscape.com It will require you signing up. Just your e-mail address and a password and you can have access to the information.They break down the side effects of medication in percentage, meaning you get a better idea of how many really feel all of the designated side effects of which ever med it may be. The fact that you worry each time he leaves the house is more reason to ponder whether he should go without medication. If you are in the United States and you are looking for hospitals that are very effective in neurology and neurosurgery, then US News and World Report is a great source. I used them prior to surgery. Here is the link.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryI am sure you may get a response from a parent on this site which will probably give you a better sense of relating and how they handle/d a son or a daughter who is diagnosed with this neurological condition. If you speak with the neurologist about other names besides Depakote, Keppra, and Lamictal, there are quite a few more. I guess what I am trying to say is the three names he gave you aren't the only names. When we decided to try the Onfi, the other two names we have as back ups just in case are one called Perampanel and another called Zonisamide. And even so, there are more names available just in case. If your hospital has what's called a "Comprehensive Epilepsy Center" then that's a great start. Also, make sure the neurologist specializes in Epilepsy. After all, neurologists do specialize in various neurological areas, such as Strokes and Parkinson's. But for your son it is best if you have a neurologist who specializes in Epilepsy. They usually can give you more information and be more practical in how they approach anyone with Epilepsy. It will take time to adjust Tina. You're a mom. And mothers are unique. That said, try to find a hospital who does a good job in neurology and neurosurgery. Best Regards

So I hear you Tina. You're pondering quite a few things, a process that is pretty natural. And given your son is 16, well, I can understand you seeing what you are seeing at this time; pondering the things you are pondering.Decisions, especially a parental decision, probably involves so many different things. For the record, I am not a parent so I can't quite get in the minds of parents. As my sister tells me, it's a unique job. So that part I get. Decisions sometimes are pretty catchy. And your writing shows just how catchy yours is. After all, to quote you; "what if he would never have another seizure and I put him on one of these meds and give him more problems."That is a natural question to ask yourself. But what helps with decisions is looking at both sides. So, in this case; "what if he does have another seizure?" I think asking both questions and answering both can help you better balance your decision. In terms of medication? They are unique. Sometimes what works well on one person doesn't necessarily work well on another. As a result, the only way to really find out is to not guess. I'll give you a great example. I once tried a medicine called Vimpat. Vimpat is pretty effective on someone I know. But when I tried it, the result was the opposite. I guess what I am trying to say to you Tina is that taking on Epilepsy comes down to two things. "Little guessing" and "patience." The upside is that neurology has advanced significantly such that even if the first med doesn't seem that effective they can edit it, meaning either change it or add another to it.At this time I am in the process of changing meds. I made sure I spoke with my neurologist about two other names just incase the one we are currently trying wasn't going to be effective. And that is how we approached it. That said, so far it has been pretty effective. Epilepsy is a neurological condition that can happen to anyone. It has little to do with how healthy we seem in other areas. This his why it is important to contextualize your son's diagnosis. That said, I can understand the process your are going through given you are a parent. As I have said, my sister made it known to me that I probably have an idea of what it's like to be a parent but I can't argue that I know what it's like to be a parent. As a result, the way you currently feel has to be so unique given you are a parent. My only advice to you is try to look at both sides -- medicine or no medicine. There is a site I will refer you too. It is  great source of spelling out back-up information on medication. You just have to type in the name. The site is www.medscape.com It will require you signing up. Just your e-mail address and a password and you can have access to the information.They break down the side effects of medication in percentage, meaning you get a better idea of how many really feel all of the designated side effects of which ever med it may be. The fact that you worry each time he leaves the house is more reason to ponder whether he should go without medication. If you are in the United States and you are looking for hospitals that are very effective in neurology and neurosurgery, then US News and World Report is a great source. I used them prior to surgery. Here is the link.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryI am sure you may get a response from a parent on this site which will probably give you a better sense of relating and how they handle/d a son or a daughter who is diagnosed with this neurological condition. If you speak with the neurologist about other names besides Depakote, Keppra, and Lamictal, there are quite a few more. I guess what I am trying to say is the three names he gave you aren't the only names. When we decided to try the Onfi, the other two names we have as back ups just in case are one called Perampanel and another called Zonisamide. And even so, there are more names available just in case. If your hospital has what's called a "Comprehensive Epilepsy Center" then that's a great start. Also, make sure the neurologist specializes in Epilepsy. After all, neurologists do specialize in various neurological areas, such as Strokes and Parkinson's. But for your son it is best if you have a neurologist who specializes in Epilepsy. They usually can give you more information and be more practical in how they approach anyone with Epilepsy. It will take time to adjust Tina. You're a mom. And mothers are unique. That said, try to find a hospital who does a good job in neurology and neurosurgery. Best Regards

So I hear you Tina. You're pondering quite a few things, a process that is pretty natural. And given your son is 16, well, I can understand you seeing what you are seeing at this time; pondering the things you are pondering.Decisions, especially a parental decision, probably involves so many different things. For the record, I am not a parent so I can't quite get in the minds of parents. As my sister tells me, it's a unique job. So that part I get. Decisions sometimes are pretty catchy. And your writing shows just how catchy yours is. After all, to quote you; "what if he would never have another seizure and I put him on one of these meds and give him more problems."That is a natural question to ask yourself. But what helps with decisions is looking at both sides. So, in this case; "what if he does have another seizure?" I think asking both questions and answering both can help you better balance your decision. In terms of medication? They are unique. Sometimes what works well on one person doesn't necessarily work well on another. As a result, the only way to really find out is to not guess. I'll give you a great example. I once tried a medicine called Vimpat. Vimpat is pretty effective on someone I know. But when I tried it, the result was the opposite. I guess what I am trying to say to you Tina is that taking on Epilepsy comes down to two things. "Little guessing" and "patience." The upside is that neurology has advanced significantly such that even if the first med doesn't seem that effective they can edit it, meaning either change it or add another to it.At this time I am in the process of changing meds. I made sure I spoke with my neurologist about two other names just incase the one we are currently trying wasn't going to be effective. And that is how we approached it. That said, so far it has been pretty effective. Epilepsy is a neurological condition that can happen to anyone. It has little to do with how healthy we seem in other areas. This his why it is important to contextualize your son's diagnosis. That said, I can understand the process your are going through given you are a parent. As I have said, my sister made it known to me that I probably have an idea of what it's like to be a parent but I can't argue that I know what it's like to be a parent. As a result, the way you currently feel has to be so unique given you are a parent. My only advice to you is try to look at both sides -- medicine or no medicine. There is a site I will refer you too. It is great source of spelling out back-up information on medication. You just have to type in the name. The site is www.medscape.com It will require you signing up. Just your e-mail address and a password and you can have access to the information.They break down the side effects of medication in percentage, meaning you get a better idea of how many really feel all of the designated side effects of which ever med it may be. The fact that you worry each time he leaves the house is more reason to ponder whether he should go without medication. If you are in the United States and you are looking for hospitals that are very effective in neurology and neurosurgery, then US News and World Report is a great source. I used them prior to surgery. Here is the link.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryI am sure you may get a response from a parent on this site which will probably give you a better sense of relating and how they handle/d a son or a daughter who is diagnosed with this neurological condition. If you speak with the neurologist about other names besides Depakote, Keppra, and Lamictal, there are quite a few more. I guess what I am trying to say is the three names he gave you aren't the only names. When we decided to try the Onfi, the other two names we have as back ups just in case are one called Perampanel and another called Zonisamide. And even so, there are more names available just in case. If your hospital has what's called a "Comprehensive Epilepsy Center" then that's a great start. Also, make sure the neurologist specializes in Epilepsy. After all, neurologists do specialize in various neurological areas, such as Strokes and Parkinson's. But for your son it is best if you have a neurologist who specializes in Epilepsy. They usually can give you more information and be more practical in how they approach anyone with Epilepsy. It will take time to adjust Tina. You're a mom. And mothers are unique. That said, try to find a hospital who does a good job in neurology and neurosurgery. Best Regards

It’s tough to hear this

Submitted by Amy Jo on Wed, 2019-02-06 - 00:57

It’s tough to hear this diagnosis. There’s a learning curve and an acceptance curve. You aren’t alone. Epilepsy is more common than people realize. Many parents have dealt with this diagnosis but epilepsies vary so everyone has a slightly different path.Those spikes they saw are associated with focal epilepsy - that combined with having had at least one seizure (many focal seizures are not recognized as seizures), mean his chances of having another seizure are high.Bet you’ve heard of high school athletes who turn out to have some cardiac condition (like long QT) sometimes it’s found and sometimes there’s a surprising death. Those kids are super healthy but you cannot tell anything is wrong by looking at them. You can’t tell many conditions without testing and docs involved. You can’t wish this away. You can take prudent action to reduce his risks.Seizures can cause permanent damage or death so treatment is arguably more important than medication for ADHD (if you want to stick with one med, compare the conditions seriously). You may not be aware of SUDEP (sudden death in epilepsy), https://www.epilepsy.com/aimforzero/about-sudep

Thank you both so much for

Submitted by TinaMG43 on Thu, 2019-02-07 - 09:56

Thank you both so much for your input and information. I guess the next step is to find the right medication for him. I will definitely be asking the Doctor a lot more questions as I do more research. I have seen some information that suggests genetic testing may help to find the right med and maybe a specific diet. I think I would also like to have him do the 24 hour EEG. I figure as much information as we can get cannot hurt. Thanks so much!