My Journey Taking care of my son

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My Son was diagnose with seizure when he was about 7 months old. But he had it since he was about 3 days old, but we did not know. Here in Jamaica my son was given different diagnose. He was diagnosed with a lot of so call conditions, it was in 2016 we took our son for a second opinion at the Johns Hopkins Medicine international. There we got a better understanding of what was happening. My Son is now five years and nine months he is still has not achieve most of his milestones, but am motivated each day by his laughs and smiles. He has less seizures now, but am working on getting him seizure free.

Comments

Hi Lloyd_5d1fbbeda9358,

Submitted by Anonymous on Mon, 2019-07-08 - 09:05

Hi Lloyd_5d1fbbeda9358, Thanks so much for sharing your story. We are glad to hear that his seizures are more controlled now and that you all are continuing to aim for no more seizures. https://www.epilepsy.com/aimforzero/strive-stop-seizuresIt's important that you discuss any changes in seizure types, frequency, behaviors, side effects andsymptoms to your son’s healthcare team to determine what individual treatments best for him. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf You all may want to consider with your son’s doctor having a device that can help track seizures, by visiting https://www.dannydid.org/ , and by keeping a seizure diary, https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . These tools may be helpful in managing his medication, identifying & tracking seizures, other symptoms, therapies, recognizing triggers and health events that may affect seizures and wellness, which can be shared with his healthcare team. Learn more about seizure alert devices & medication management here, https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf As a caretaker: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers ,it’s just as important to make sure you’re taking care of yourself as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf.The Wellness Institute: epilepsy.com/wellness ,provides tools and strategies to better assist your loved one and support you in your important role. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsIt can be helpful to connect with other people who live with, or care for those with epilepsy, to ask questions, share experiences, find & give support to each other : https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents Contact your local Epilepsy Foundation here: epilepsy.com/localsupport, to find support groups, events, and programs in your community. https://www.epilepsy.com/living-epilepsy/our-programs/individual-family-servicesAdditionally our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, can assist in connecting you to resources, provide referrals and additional support. epilepsy.com/helpline

Hi Lloyd_5d1fbbeda9358, Thanks so much for sharing your story. We are glad to hear that his seizures are more controlled now and that you all are continuing to aim for no more seizures.  https://www.epilepsy.com/aimforzero/strive-stop-seizuresIt's important that you discuss any changes in seizure types, frequency, behaviors, side effects andsymptoms to your son’s healthcare team to determine what individual treatments best for him. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf You all may want to consider with your son’s doctor having a device that can help track seizures, by visiting https://www.dannydid.org/ , and by keeping a seizure diary, https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . These tools may be helpful in managing his medication, identifying & tracking seizures, other symptoms, therapies, recognizing triggers and health events that may affect seizures and wellness, which can be shared with his healthcare team. Learn more about seizure alert devices & medication management here, https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf  As a caretaker:  https://www.epilepsy.com/living-epilepsy/parents-and-caregivers ,it’s just as important to make sure you’re taking care of yourself as well.   https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf.The Wellness Institute: epilepsy.com/wellness  ,provides tools and strategies to better assist your loved one and support you in your important role. For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsIt can be helpful to connect with other people who live with, or care for those with epilepsy, to ask questions, share experiences, find & give support to each other :  https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  Contact your local Epilepsy Foundation here: epilepsy.com/localsupport, to find support groups, events, and programs in your community. https://www.epilepsy.com/living-epilepsy/our-programs/individual-family-servicesAdditionally our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, can assist in connecting you to resources, provide referrals and additional support. epilepsy.com/helpline  

Hi Lloyd_5d1fbbeda9358, Thanks so much for sharing your story. We are glad to hear that his seizures are more controlled now and that you all are continuing to aim for no more seizures. https://www.epilepsy.com/aimforzero/strive-stop-seizuresIt's important that you discuss any changes in seizure types, frequency, behaviors, side effects andsymptoms to your son’s healthcare team to determine what individual treatments best for him. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf You all may want to consider with your son’s doctor having a device that can help track seizures, by visiting https://www.dannydid.org/ , and by keeping a seizure diary, https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . These tools may be helpful in managing his medication, identifying & tracking seizures, other symptoms, therapies, recognizing triggers and health events that may affect seizures and wellness, which can be shared with his healthcare team. Learn more about seizure alert devices & medication management here, https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf As a caretaker: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers ,it’s just as important to make sure you’re taking care of yourself as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf.The Wellness Institute: epilepsy.com/wellness ,provides tools and strategies to better assist your loved one and support you in your important role. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsIt can be helpful to connect with other people who live with, or care for those with epilepsy, to ask questions, share experiences, find & give support to each other : https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents Contact your local Epilepsy Foundation here: epilepsy.com/localsupport, to find support groups, events, and programs in your community. https://www.epilepsy.com/living-epilepsy/our-programs/individual-family-servicesAdditionally our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, can assist in connecting you to resources, provide referrals and additional support. epilepsy.com/helpline

Great to see that you are

Submitted by Jazz101 on Mon, 2019-07-08 - 20:54

Great to see that you are trying to get to know as much as you can about Epilepsy while at the same time seeing beyond your son's diagnosis Lloyd. One of the complexities with Epilepsy is how it is perceived by many. To quote Dr. Orrin Devinsky, the neurologist who oversees the Comprehensive Epilepsy Center at NYU Medical Center here in New York City; "Epilepsy is just a neurological condition."I was diagnosed when I was a kid, about age 4. I am extremely grateful to my parents and my grandparents, both of them being in medicine, for not allowing Epilepsy to define me. Ironically, like you and your son, I also grew up in the Caribbean. Cricket and football were my sports. (Yes, they call it soccer today but like me you probably still say football). :)I also took part in other athletic events for my house in high school. The point is this, don't allow Epilepsy to define your son. After all, neurology has advanced significantly. Yes the seizures can be annoying in its own ways, such as interfering with memory etc. That said, make sure you groom your son to not allow it to define him. Put it this way, and a famous journalist here in the United States wrote of it in his book; a lapse in memory doesn't mean the information isn't there. My grades in college were, well, not what I had hoped for given the side effects of the medicine and the mapping of the focal area. (The focal area is where the seizure starts). My seizures were/are centered close to language and speech and memory, two significant functions. That said, I realized it only affected my exam results, not my ability to perform on my own. After all, the information is still there. You cited your son and achieving his milestones. What is most important to achieving goals is to make sure he sees Epilepsy as a neurological condition versus something that defines him. As neurology teaches; "seizures are Epileptic; people with Epilepsy aren't." Hence, make sure you correct anyone who refers to him as "Epileptic." Make sure you correct them by letting them know "a person who has Epilepsy isn't Epileptic; the seizures are Epileptic." Sort of the way someone with Cancer is never defined as Cancerous. Medicine teaches that area where the Cancer is centered is what they refer to as "Cancerous tissue." What is great to know Lloyd is that you are focusing on your son as your son. And, as you have noted, you are also focused on what he can achieve. That was the approach of my parents and my grandparents. As a result, I never saw Epilepsy as a defining factor just as you or he shouldn't see it as a defining factor. The President and CEO of the Epilepsy Foundation, a gentleman by the name of Philip Gattone, tells a great story of how he also didn't allow Epilepsy to limit his son. After all, we know so much more. It's great to see you seemingly taking on a similar approach Lloyd. And, as you can see, the response by "ConnectHelp" has given you a head start in so many different things to be aware of.You and your son have a lot of company Lloyd. And collectively we push to take on this neurological condition by making sure we are disciplined with the medical treatment while simultaneously making sure the condition doesn't define us. Best Regards

Great to see that you are trying to get to know as much as you can about Epilepsy while at the same time seeing beyond your son's diagnosis Lloyd. One of the complexities with Epilepsy is how it is perceived by many. To quote Dr. Orrin Devinsky, the neurologist who oversees the Comprehensive Epilepsy Center at NYU Medical Center here in New York City; "Epilepsy is just a neurological condition."I was diagnosed when I was a kid, about age 4. I am extremely grateful to my parents and my grandparents, both of them being in medicine, for not allowing Epilepsy to define me. Ironically, like you and your son, I also grew up in the Caribbean. Cricket and football were my sports. (Yes, they call it soccer today but like me you probably still say football). :)I also took part in other athletic events for my house in high school. The point is this, don't allow Epilepsy to define your son. After all, neurology has advanced significantly. Yes the seizures can be annoying in its own ways, such as interfering with memory etc. That said, make sure you groom your son to not allow it to define him. Put it this way, and a famous journalist here in the United States wrote of it in his book; a lapse in memory doesn't mean the information isn't there. My grades in college were, well, not what I had hoped for given the side effects of the medicine and the mapping of the focal area. (The focal area is where the seizure starts). My seizures were/are centered close to language and speech and memory, two significant functions. That said, I realized it only affected my exam results, not my ability to perform on my own. After all, the information is still there. You cited your son and achieving his milestones. What is most important to achieving goals is to make sure he sees Epilepsy as a neurological condition versus something that defines him. As neurology teaches; "seizures are Epileptic; people with Epilepsy aren't."  Hence, make sure you correct anyone who refers to him as "Epileptic." Make sure you correct them by letting them know "a person who has Epilepsy isn't Epileptic; the seizures are Epileptic." Sort of the way someone with Cancer is never defined as Cancerous. Medicine teaches that area where the Cancer is centered is what they refer to as "Cancerous tissue."  What is great to know Lloyd is that you are focusing on your son as your son. And, as you have noted, you are also focused on what he can achieve. That was the approach of my parents and my grandparents. As a result, I never saw Epilepsy as a defining factor just as you or he shouldn't see it as a defining factor. The President and CEO of the Epilepsy Foundation, a gentleman by the name of Philip Gattone, tells a great story of how he also didn't allow Epilepsy to limit his son. After all, we know so much more. It's great to see you seemingly taking on a similar approach Lloyd. And, as you can see, the response by "ConnectHelp" has given you a head start in so many different things to be aware of.You and your son have a lot of company Lloyd. And collectively we push to take on this neurological condition by making sure we are disciplined with the medical treatment while simultaneously making sure the condition doesn't define us. Best Regards

Great to see that you are trying to get to know as much as you can about Epilepsy while at the same time seeing beyond your son's diagnosis Lloyd. One of the complexities with Epilepsy is how it is perceived by many. To quote Dr. Orrin Devinsky, the neurologist who oversees the Comprehensive Epilepsy Center at NYU Medical Center here in New York City; "Epilepsy is just a neurological condition."I was diagnosed when I was a kid, about age 4. I am extremely grateful to my parents and my grandparents, both of them being in medicine, for not allowing Epilepsy to define me. Ironically, like you and your son, I also grew up in the Caribbean. Cricket and football were my sports. (Yes, they call it soccer today but like me you probably still say football). :)I also took part in other athletic events for my house in high school. The point is this, don't allow Epilepsy to define your son. After all, neurology has advanced significantly. Yes the seizures can be annoying in its own ways, such as interfering with memory etc. That said, make sure you groom your son to not allow it to define him. Put it this way, and a famous journalist here in the United States wrote of it in his book; a lapse in memory doesn't mean the information isn't there. My grades in college were, well, not what I had hoped for given the side effects of the medicine and the mapping of the focal area. (The focal area is where the seizure starts). My seizures were/are centered close to language and speech and memory, two significant functions. That said, I realized it only affected my exam results, not my ability to perform on my own. After all, the information is still there. You cited your son and achieving his milestones. What is most important to achieving goals is to make sure he sees Epilepsy as a neurological condition versus something that defines him. As neurology teaches; "seizures are Epileptic; people with Epilepsy aren't." Hence, make sure you correct anyone who refers to him as "Epileptic." Make sure you correct them by letting them know "a person who has Epilepsy isn't Epileptic; the seizures are Epileptic." Sort of the way someone with Cancer is never defined as Cancerous. Medicine teaches that area where the Cancer is centered is what they refer to as "Cancerous tissue." What is great to know Lloyd is that you are focusing on your son as your son. And, as you have noted, you are also focused on what he can achieve. That was the approach of my parents and my grandparents. As a result, I never saw Epilepsy as a defining factor just as you or he shouldn't see it as a defining factor. The President and CEO of the Epilepsy Foundation, a gentleman by the name of Philip Gattone, tells a great story of how he also didn't allow Epilepsy to limit his son. After all, we know so much more. It's great to see you seemingly taking on a similar approach Lloyd. And, as you can see, the response by "ConnectHelp" has given you a head start in so many different things to be aware of.You and your son have a lot of company Lloyd. And collectively we push to take on this neurological condition by making sure we are disciplined with the medical treatment while simultaneously making sure the condition doesn't define us. Best Regards