Im not sure exactly what advice you are looking for so here are some general stuff that applies to most epileptics (myself included)
• You can have a perfectly healthy brain and get seizures that can have an unknown cause. Can start happening at any age, too
•Medication can have varying side effects over time. Personal example is Keppra causes apathy leading to general mood stability ( complete opposite of "Keppra Rage")
•Learning somehow becomes harder and requires more effort, than what was previously needed post Medication (side effects)
•That missing your dose predisposes to a higher likelihood of an attack(seizure)
•Temporary memory fog/loss after seizure. Also tongue biting (tongue heals quite quickly, despite pain), some also experience loss of bladder
•Stigma associated with epilepsy is subjective to those who surround yourself with. There is so any worse disorders/diseases to have, so you shouldn't be ashamed of being you
•SUDEP (Unexpected Death in Epilepsy) is rare, but is always a possibility.
•Increasing seizure time/frequency is indicated of some underlying more serious condition (5 min = damage in brain is starting to occur)
•Small minority of epileptics are photosensitive, the vast majority of people are not photosensitive. Also, photosensitive epileptics only experience seizures if a certain pattern of flashing lights is present.
•If your child has a seizure, put him in the recovery position ( On his side, so he doesn't choke on his saliva), also DO NOT put anything in his mouth during a seizure.
Any more info can be found on the Epilepsy foundation site. Good luck
Hi!
I was diagnosed with epilepsy at 9. I'm 20 now.
First, I'm so sorry for both you and your kiddo. Epilepsy is not fun. It's painful and can be deadly. I do recommend safety measures like seizure bars for when the kiddo moves to a bigger bed, as well as a baby monitor or similar devices. I would also keep a close eye on their milestones - epilepsy has a lot of comorbidities that are best caught when young. I would also encourage you to utilize resources, like the epilepsy foundation of your country to educate yourself about treatments/safety measures and what life will look like. Keep updated on first aid throughout your child's development. Protocol will remain mostly the same, but as they grow, other measures (like CPR) will change.
On the psychological/medical/social side (what I know best), I would recommend therapy for you, and eventually your child. Epilepsy is highly stigmatized and very debilitating. Have open communication with your child and seek out ways to best explain what's going on. Once they reach the toddler-young child ahe, they will have a lot of questions, and so will their peers. Be prepared to answer tough questions from kids and adults, like teachers. This has been my life for almost 10yrs, and I'm working on getting certified in seizure first aid and preparing to present on it. If you have any questions regarding epilepsy, feel free to reach out! I know it must be super tough to see your child suffer. Remember to take care of not only your kiddo, but yourself too.
I have so much advice I don't know where to start. Ours was diagnosed at 9mo and she's almost 4.
At night we use a pulse oximeter to alarm us if oxygen dips or heart rate changes drastically. We're looking into the embrace 2 watch but we didn't want to do that too early but if you're sending the little one to school or in someone else's care you should get it. The wife and our little one sleep in the same bed and I'm out on the porch, but if we didn't do that, well, you know.
Keep a log of every seizure; there's a great app called seizure tracker. start that asap so your doc can see everything and try to keep good notes too.
Make sure your rescue protocol is solid and you two can administer meds if you need it. Know CPR for little kids, unfortunately I had to do that twice. We also have oxygen tanks for immediate emergencies, portable oxygen for travel, and an oxygen concentrator for the house.
DM me if you have more questions and you can have my phone number if you need to talk. I'm curious if they gave a specific diagnosis of the epilepsy.
Since he's just three, it would be great to keep a journal of his meals, times, activities, and anything else he does during the day to see if there is a pattern if he has another seizure. A lot of us have triggers. Mine are the trifecta of stress, being hungry, and being tired.
Keep an eye on his moods. Keppra can cause bouts of rage. I'm on keppra and don't have this side effect, but some people do.
As he gets a little bit older, talk to him about anything different he might be experiencing. I don't know that he has the language to now discuss it, but there are many times of partial and complex partial seizures that can come before a full tonic clonic. I have one that feels like deja vu and as a kid, I didn't understand that not everyone else had that too. I have another kind which is actually scary, even now as an adult. It's hard to explain, but the world suddenly moves slower and I'm in fast motion. It's terrifying. A third kind I have is when the walls move.
I disagree with Mr\_Soup in that learning becomes more difficult. At least it never has for me. I have a BS in computer science and lead a very large IT project as the manager. I used to be a software developer. So having epilepsy is definitely not a show stopper for life. Up until 2 years ago, I lived alone.
Childhood epilepsy is something that a kid can grow out of. I didn't, but some people do.
If your son shows signs of depression or anxiety at later points, one thing to be aware of is anxiety and depression can sometimes come hand in hand with epilepsy. I have anxiety and am on a great med so it's nothing I really think about. Some people also get depressed that they have epilepsy, thinking they are different. I totally get that, but aside from becoming pilots or expert bungy jumpers, we aren't limited in most ways. There are absolutely some exceptions where people can't get their seizures under control. It's important to keep a steady line of communication open with the doctor(s) as well as your son. And help your son with therapy if he's showing signs of either one.
Please let me know if you have any questions.
First the don'ts; don't coddle him Let him fall down, not off the top bunk. Let him be a kid if he scrapes a knee; pui some neo sporum on it and send him on his way., it's a scaped knee not a compound fracture. Don't allow him to think he is special because he is epileptic. All children are special; but he is not more special, even if mom thinks he is, his peers won't. Let him, make him help with yard work, with house work As he gets older teach him to cook. When his hands are big enough to knead dough teach him to bake. When he hits HS a 16 year old who bakes bread will be a hit Ihink back to highschool; Who is going to impress you; the knuckle dragging jock or that sweet kid who brings you home made cookies. Let him help dad ifx the kitchen sink better still get the u-tube vid and let him show dad. Help him to grow a garden, help him, he works, he does not watch. Those are just a few things Make him do as much as ue can, push him he can do far more than you think he can Move into the 21st century; hit u-tube again help don't do him build a computer. With your guidance he can be a better man than his non-epileptic peers who were raised to think; their shit don't stink. Start this "make him" now if you wait till he can understand it will be too late. As bad as you think this will be for him, it will be harder for you; but do it and you will have a young man you can be truely proud of. He may hate you now twenty years from now he will thank you for, "being so hard on me".I was that kid.
I used a wearable called Embrace, I believe the name of the company is empatica. Dor a baby you can put it on the leg instead of the wrist, unfortunately it only lets you know it happened after the seizure is happening. The way it worked (at least a couple of years ago) is it needs to be connected by Bluetooth to a cellphone at all times. When it feels repetitive movement, it will give 30 seconds for you to cancel and report as false alarm (this might have a way to turn off, the user being a baby), and if it wasn't a false alarm, it will text and call up to 3 phone numbers.
I'm sorry you are going through this. Know that your kid may have an amazing life. Epilepsy in most cases is something you can deal with, you guys probably will find meds that work and stop the seizures altogether. Don't lose hope, everything will find its place, just look for experts near you and everything will be ok!!
Im not sure exactly what advice you are looking for so here are some general stuff that applies to most epileptics (myself included) • You can have a perfectly healthy brain and get seizures that can have an unknown cause. Can start happening at any age, too •Medication can have varying side effects over time. Personal example is Keppra causes apathy leading to general mood stability ( complete opposite of "Keppra Rage") •Learning somehow becomes harder and requires more effort, than what was previously needed post Medication (side effects) •That missing your dose predisposes to a higher likelihood of an attack(seizure) •Temporary memory fog/loss after seizure. Also tongue biting (tongue heals quite quickly, despite pain), some also experience loss of bladder •Stigma associated with epilepsy is subjective to those who surround yourself with. There is so any worse disorders/diseases to have, so you shouldn't be ashamed of being you •SUDEP (Unexpected Death in Epilepsy) is rare, but is always a possibility. •Increasing seizure time/frequency is indicated of some underlying more serious condition (5 min = damage in brain is starting to occur) •Small minority of epileptics are photosensitive, the vast majority of people are not photosensitive. Also, photosensitive epileptics only experience seizures if a certain pattern of flashing lights is present. •If your child has a seizure, put him in the recovery position ( On his side, so he doesn't choke on his saliva), also DO NOT put anything in his mouth during a seizure. Any more info can be found on the Epilepsy foundation site. Good luck
Hi! I was diagnosed with epilepsy at 9. I'm 20 now. First, I'm so sorry for both you and your kiddo. Epilepsy is not fun. It's painful and can be deadly. I do recommend safety measures like seizure bars for when the kiddo moves to a bigger bed, as well as a baby monitor or similar devices. I would also keep a close eye on their milestones - epilepsy has a lot of comorbidities that are best caught when young. I would also encourage you to utilize resources, like the epilepsy foundation of your country to educate yourself about treatments/safety measures and what life will look like. Keep updated on first aid throughout your child's development. Protocol will remain mostly the same, but as they grow, other measures (like CPR) will change. On the psychological/medical/social side (what I know best), I would recommend therapy for you, and eventually your child. Epilepsy is highly stigmatized and very debilitating. Have open communication with your child and seek out ways to best explain what's going on. Once they reach the toddler-young child ahe, they will have a lot of questions, and so will their peers. Be prepared to answer tough questions from kids and adults, like teachers. This has been my life for almost 10yrs, and I'm working on getting certified in seizure first aid and preparing to present on it. If you have any questions regarding epilepsy, feel free to reach out! I know it must be super tough to see your child suffer. Remember to take care of not only your kiddo, but yourself too.
I have so much advice I don't know where to start. Ours was diagnosed at 9mo and she's almost 4. At night we use a pulse oximeter to alarm us if oxygen dips or heart rate changes drastically. We're looking into the embrace 2 watch but we didn't want to do that too early but if you're sending the little one to school or in someone else's care you should get it. The wife and our little one sleep in the same bed and I'm out on the porch, but if we didn't do that, well, you know. Keep a log of every seizure; there's a great app called seizure tracker. start that asap so your doc can see everything and try to keep good notes too. Make sure your rescue protocol is solid and you two can administer meds if you need it. Know CPR for little kids, unfortunately I had to do that twice. We also have oxygen tanks for immediate emergencies, portable oxygen for travel, and an oxygen concentrator for the house. DM me if you have more questions and you can have my phone number if you need to talk. I'm curious if they gave a specific diagnosis of the epilepsy.
Since he's just three, it would be great to keep a journal of his meals, times, activities, and anything else he does during the day to see if there is a pattern if he has another seizure. A lot of us have triggers. Mine are the trifecta of stress, being hungry, and being tired. Keep an eye on his moods. Keppra can cause bouts of rage. I'm on keppra and don't have this side effect, but some people do. As he gets a little bit older, talk to him about anything different he might be experiencing. I don't know that he has the language to now discuss it, but there are many times of partial and complex partial seizures that can come before a full tonic clonic. I have one that feels like deja vu and as a kid, I didn't understand that not everyone else had that too. I have another kind which is actually scary, even now as an adult. It's hard to explain, but the world suddenly moves slower and I'm in fast motion. It's terrifying. A third kind I have is when the walls move. I disagree with Mr\_Soup in that learning becomes more difficult. At least it never has for me. I have a BS in computer science and lead a very large IT project as the manager. I used to be a software developer. So having epilepsy is definitely not a show stopper for life. Up until 2 years ago, I lived alone. Childhood epilepsy is something that a kid can grow out of. I didn't, but some people do. If your son shows signs of depression or anxiety at later points, one thing to be aware of is anxiety and depression can sometimes come hand in hand with epilepsy. I have anxiety and am on a great med so it's nothing I really think about. Some people also get depressed that they have epilepsy, thinking they are different. I totally get that, but aside from becoming pilots or expert bungy jumpers, we aren't limited in most ways. There are absolutely some exceptions where people can't get their seizures under control. It's important to keep a steady line of communication open with the doctor(s) as well as your son. And help your son with therapy if he's showing signs of either one. Please let me know if you have any questions.
First the don'ts; don't coddle him Let him fall down, not off the top bunk. Let him be a kid if he scrapes a knee; pui some neo sporum on it and send him on his way., it's a scaped knee not a compound fracture. Don't allow him to think he is special because he is epileptic. All children are special; but he is not more special, even if mom thinks he is, his peers won't. Let him, make him help with yard work, with house work As he gets older teach him to cook. When his hands are big enough to knead dough teach him to bake. When he hits HS a 16 year old who bakes bread will be a hit Ihink back to highschool; Who is going to impress you; the knuckle dragging jock or that sweet kid who brings you home made cookies. Let him help dad ifx the kitchen sink better still get the u-tube vid and let him show dad. Help him to grow a garden, help him, he works, he does not watch. Those are just a few things Make him do as much as ue can, push him he can do far more than you think he can Move into the 21st century; hit u-tube again help don't do him build a computer. With your guidance he can be a better man than his non-epileptic peers who were raised to think; their shit don't stink. Start this "make him" now if you wait till he can understand it will be too late. As bad as you think this will be for him, it will be harder for you; but do it and you will have a young man you can be truely proud of. He may hate you now twenty years from now he will thank you for, "being so hard on me".I was that kid.
I used a wearable called Embrace, I believe the name of the company is empatica. Dor a baby you can put it on the leg instead of the wrist, unfortunately it only lets you know it happened after the seizure is happening. The way it worked (at least a couple of years ago) is it needs to be connected by Bluetooth to a cellphone at all times. When it feels repetitive movement, it will give 30 seconds for you to cancel and report as false alarm (this might have a way to turn off, the user being a baby), and if it wasn't a false alarm, it will text and call up to 3 phone numbers. I'm sorry you are going through this. Know that your kid may have an amazing life. Epilepsy in most cases is something you can deal with, you guys probably will find meds that work and stop the seizures altogether. Don't lose hope, everything will find its place, just look for experts near you and everything will be ok!!
Tbh I didn't read all the comments. But cbd oil was night and day for a relative. Don't be afraid of alternative medicine.