From the way he went into that seizure, it reminds me of my own, which are fired from the temporal lobe of the brain, I've been having seizures of that type for about 15 years now. Is he controlled on medication?
@eddief32 hi eddie, he is much better these days he has only a few tonic clonics a week while sleeping and they are short fortunately ie. Less than one minute. I notice in your profile that you are hearing impaired .. Luke is also. He wears hearing aides and attends an early intervention kinder two days a week which is oral and signing. l
Just came across this video. Having a 3..almost 4 year old daughter with epilepsy my heart goes out to you. She was diagnosed with epilepsy in December of 2008. She was 2 years old then. Been on Keppra since then and no seizures since that December 08. Doctor thinks there is a good chance she has/will out grow them and will take her of meds when she goes 2 years no seizures. Hers where just like Luke's seeing this video brought back a lot of emotion. The helpless feeling as a parent during them.
@val31178 Hope your daughter doing well. Luke is doing much better. He is now only having short tcs lasting <30secs and stopping by themselves when he is asleep. He gets them most nghts, but isn't currently getting any waking seizures at the moment thankfully.
Your Luke reminds me very much of my little man. Our Bug's seizures looked exactly like this before his Lamictal/Keppra/Zonegran therapy. Bug now has short duration T/C's almost nightly. Which is MUCH better than 3 minute T/C's 10 times a night. How is Luke doing now? He is absolutely adorable, so sorry he has to go through this and you as well. Does he often say he is cold before he has a seizure? All my best to you and your Luke!
@Nett1016 Hope your child is doing better. Luke is much better these days . He isn't getting seizures whilst awake anymore (he was getting up to 60 a day at its peak) but is getting typically one short tc less than 30secs most nights, occasionally he will have more than one in a night. But certainly improved dramatically - but took a year to get it to this level of control. All the best to you guys as well.
i'm sorry to hear about Luke,but thanks for posting this...it is very informative. Do keep us posted about how he is getting on...wishing you all the best...
Luke was diagnosed with idiopathic Generalized Epilepsy. However as its been 1 year now and he is not well controlled on generalized epilepsy meds they are thinking that he might have partial/focal epilepsy. So we are going to hospital in 2weeks for some video eeg monitoring to get to the bottom of it. He has had some brain damage at birth due to hypoxia and also a stroke (left brain) which has left him with very mild hemiplegia
So sorry....he will not remember anything and it will take a few minutes for him to 'come to' and he will be confused at first. I also suffer these types of seizures...tonic-clonic seizures. Good luck to you all...there is a special type of diet you can try....forget the name of it...ask the neurologist...it can help children when meds fail to control seizures.
Im 19 and last year i got diagnosed with sleep epilepsy which is just like this if i dont have enough sleep or i get run down.
i had 2 random seizures at the beggining of 2009 and i am now on lamotrigine which has worked a treat and i have not had no more seizures or twitches ").
best of luck with him tho i know how tough this is.
Unfortunatly I had anothoer seizure 2 weeks ago :(. In my sleep. I was able to drive at the end of march too, & now i have to wait another year :(. Its sucks majorly. Hope he is doing okay :)
Sorry to hear that you had a seizure and that you can't drive for another year. That is a real pain. Luke is doing ok, he has had 5seizure free days after an increase in his Frisium. Video EEG next week will hopefully get to the bottom of it.
I was told by a friend recently, who has a daughter with epilepsy, that when they put their thumb inside their fist like that, to pull it out, and hold their thumb straight, and it should help the seizure to stop. Best of luck to your family.
My thoughts are with you, my daughter is 3 and just started having the tonic clonics at the beginning of Jan. Hers are almost exactly the same as Lukes only my daughter lets out a massive scream prior to hers starting. I hope the meds are doing better for Luke now. We are still in the testing phase for the right meds.
Hope your daughter is doing ok. We've been trying different meds for almost a year now and still not well controlled. We are going into hospital in 2weeks time for video eeg monitoring and hopefully will get to the bottom of it.
My oldest son that is 17 now has had grand mal siezure since birth.You see these idiots posting fake siezure on here make me sick.Epilepsy can really change your lifestyle.I will keep your son in my prayers.
not sure why he has epilepsy. Originally they thought it was generalized epilepsy which they dont really know the cause but it may be focal or focal epilepsy which they are going to investigate soon. We didn't know he was gonna have a seizure when we filled. Hospital asked us to film to capture some seizures before we went in for his eeg. But he was having so many we thought we get some, but didn't expect the tonic clonic. Just a fluke.
I know how incredibly scary this was for you. My son was this age (he is now 5) when he had his 1st siezure. I can hear that panic in your voices: not sure what to do, trying to remain calm, praying that your son wasn't going to stop breathing. I've been there. I know it's terribly frightening. Your video made me cry. I hope Luke has found the right treatment and his seizures are under control. My son Evan is taking siezure meds but still has breakthroughs :(. Good luck and God Bless.
You guys are doing a great job....hang in there.....I have two children with epilepsy....it's a tough road..but there will be better days....one of my son's has seizures similiar to your son....i'm on kgaccount....also my hubby's account cdfoakley Bless you all!
good move leaveing him on his side after that just let the sezure pass ive had epilepsy since i was 3 im 19 now still get it from time to time your mind is right there you can think its jut the rest of your bad acts like it has a mind of its own
he is wearing hearing aides as he is hearing impaired . He has a moderate to severe hearing loss. His hearing loss is moderate at the low speech frequencies and severe at the high speech frequencies. This means he doesnt hear s, p, t, f type sounds without his hearing aides very well. We can speak to him without his hearing aides in a quiet environment and he will get most of what we are saying but will just get mixed up on similar sounding words.
He is doing ok. Still not under control after 1 year. Going to hospital in 2 weeks for some Video EEG monitoring to try and get to the bottom of it. They thought it was generalized epilepsy but are now thinking it might be partial/focal.
Thanks for sharing. We recently experienced this with our two year old son for the first time. We were so scared and uneducated about how often this can occur with children. We thought he was choking. Thank you for sharing.
thks. He is currently on Frisium / Keppra and Epilim. The keppra isn't really helping. Before the keppra he was on Zarontin which I think was doing better then the keppra.
I have had a grand mal seizure and my husband and son told me it lasted for over five minutes. I could not hear anything during my seizure, until I was in the ambulance. I am on Epilim. I am a Mum with four children and my oldest son was the one who saw me have mine. After a seizure you feel so weak, so dis-orientated, and so tired. I hope Luke does not have to suffer this for the rest of his life and his condition improves.
Until I had experienced this I would have questioned why you would post this.
Now after my son experienced his first and hopefully only seizure last week....your calm inspires me. At first I thought he was dying it was a little more severe than this in that he was blue for a good 2 minutes but today he is fine :) EEG today so we await results.....this is also a chance for my husband to have a small taste of what I went through.....good luck to Luke.
From the way he went into that seizure, it reminds me of my own, which are fired from the temporal lobe of the brain, I've been having seizures of that type for about 15 years now. Is he controlled on medication?
eddief32 1 year ago
@eddief32 hi eddie, he is much better these days he has only a few tonic clonics a week while sleeping and they are short fortunately ie. Less than one minute. I notice in your profile that you are hearing impaired .. Luke is also. He wears hearing aides and attends an early intervention kinder two days a week which is oral and signing. l
kplowman 1 year ago
Just came across this video. Having a 3..almost 4 year old daughter with epilepsy my heart goes out to you. She was diagnosed with epilepsy in December of 2008. She was 2 years old then. Been on Keppra since then and no seizures since that December 08. Doctor thinks there is a good chance she has/will out grow them and will take her of meds when she goes 2 years no seizures. Hers where just like Luke's seeing this video brought back a lot of emotion. The helpless feeling as a parent during them.
val31178 1 year ago
@val31178 Hope your daughter doing well. Luke is doing much better. He is now only having short tcs lasting <30secs and stopping by themselves when he is asleep. He gets them most nghts, but isn't currently getting any waking seizures at the moment thankfully.
kplowman 1 year ago
hugz n prayerz
luke hang in the buddy i have seizures too
crazyboafrog1986 1 year ago
I have epilepsy , im sorry about your son.
heatherwolf2704 1 year ago
Your Luke reminds me very much of my little man. Our Bug's seizures looked exactly like this before his Lamictal/Keppra/Zonegran therapy. Bug now has short duration T/C's almost nightly. Which is MUCH better than 3 minute T/C's 10 times a night. How is Luke doing now? He is absolutely adorable, so sorry he has to go through this and you as well. Does he often say he is cold before he has a seizure? All my best to you and your Luke!
Nett1016 1 year ago
@Nett1016 Hope your child is doing better. Luke is much better these days . He isn't getting seizures whilst awake anymore (he was getting up to 60 a day at its peak) but is getting typically one short tc less than 30secs most nights, occasionally he will have more than one in a night. But certainly improved dramatically - but took a year to get it to this level of control. All the best to you guys as well.
kplowman 1 year ago
i'm sorry to hear about Luke,but thanks for posting this...it is very informative. Do keep us posted about how he is getting on...wishing you all the best...
kylabotting 1 year ago
what are a fluke?
monjanse 2 years ago
a fluke - a coincidence, a chance happening..
kplowman 2 years ago
Luke was diagnosed with idiopathic Generalized Epilepsy. However as its been 1 year now and he is not well controlled on generalized epilepsy meds they are thinking that he might have partial/focal epilepsy. So we are going to hospital in 2weeks for some video eeg monitoring to get to the bottom of it. He has had some brain damage at birth due to hypoxia and also a stroke (left brain) which has left him with very mild hemiplegia
kplowman 2 years ago
So sorry....he will not remember anything and it will take a few minutes for him to 'come to' and he will be confused at first. I also suffer these types of seizures...tonic-clonic seizures. Good luck to you all...there is a special type of diet you can try....forget the name of it...ask the neurologist...it can help children when meds fail to control seizures.
legioncoleke 2 years ago
Wow what great parents! This kind of thing is soo scarey!! My brother is 28 and has extremely bad siezures as well. You feel so helpless :(
Best of luck to u and your family * HUGS *
ManDerZ83 2 years ago
hey
Im 19 and last year i got diagnosed with sleep epilepsy which is just like this if i dont have enough sleep or i get run down.
i had 2 random seizures at the beggining of 2009 and i am now on lamotrigine which has worked a treat and i have not had no more seizures or twitches ").
best of luck with him tho i know how tough this is.
xx
Rangehillmegan664 2 years ago
Thanks Range. Luke tried lamotrigine (Lamictal) but unfortunately was allergic to it and got a full body rash.
kplowman 2 years ago
@kplowman
Ohh thats not good.
Unfortunatly I had anothoer seizure 2 weeks ago :(. In my sleep. I was able to drive at the end of march too, & now i have to wait another year :(. Its sucks majorly. Hope he is doing okay :)
Rangehillmegan664 2 years ago
Sorry to hear that you had a seizure and that you can't drive for another year. That is a real pain. Luke is doing ok, he has had 5seizure free days after an increase in his Frisium. Video EEG next week will hopefully get to the bottom of it.
kplowman 2 years ago
Classic tonic clonic seizure.
When he says he feels cold, it appears that's the aura right before the seizure hits.
Before I've had grand mal's I always can feel something is imminently wrong a few seconds before it happens.
StormChaserMax 2 years ago
Thanks Storm. Hope your seizures are under control. I haven't heard him complain of being cold b4 his other grand mals / tonic clonics.
kplowman 2 years ago
I was told by a friend recently, who has a daughter with epilepsy, that when they put their thumb inside their fist like that, to pull it out, and hold their thumb straight, and it should help the seizure to stop. Best of luck to your family.
soposthardcore 2 years ago
My thoughts are with you, my daughter is 3 and just started having the tonic clonics at the beginning of Jan. Hers are almost exactly the same as Lukes only my daughter lets out a massive scream prior to hers starting. I hope the meds are doing better for Luke now. We are still in the testing phase for the right meds.
imagonad 2 years ago
Hope your daughter is doing ok. We've been trying different meds for almost a year now and still not well controlled. We are going into hospital in 2weeks time for video eeg monitoring and hopefully will get to the bottom of it.
kplowman 2 years ago
best wishes to your family, i know how horrible these are.
PreciousWords88 2 years ago
that's terrifying! oh I hope he's okay! i had a seizure once. i don't know what kind it was, though. but i'm okay.
twilightgirl1230 2 years ago
My oldest son that is 17 now has had grand mal siezure since birth.You see these idiots posting fake siezure on here make me sick.Epilepsy can really change your lifestyle.I will keep your son in my prayers.
woodnic 2 years ago
why do he have epilepsy? how did you cnow he going to have it in this clip when you filmed it?
monjanse 2 years ago
not sure why he has epilepsy. Originally they thought it was generalized epilepsy which they dont really know the cause but it may be focal or focal epilepsy which they are going to investigate soon. We didn't know he was gonna have a seizure when we filled. Hospital asked us to film to capture some seizures before we went in for his eeg. But he was having so many we thought we get some, but didn't expect the tonic clonic. Just a fluke.
kplowman 2 years ago
is he doing fine
mponekov 2 years ago
I know how incredibly scary this was for you. My son was this age (he is now 5) when he had his 1st siezure. I can hear that panic in your voices: not sure what to do, trying to remain calm, praying that your son wasn't going to stop breathing. I've been there. I know it's terribly frightening. Your video made me cry. I hope Luke has found the right treatment and his seizures are under control. My son Evan is taking siezure meds but still has breakthroughs :(. Good luck and God Bless.
weenybeeny 2 years ago
Hope Evan is doing ok. We still haven't got Luke's epilepsy under control yet. He is now 4 and has had it for about 1 year.
kplowman 2 years ago
You guys are doing a great job....hang in there.....I have two children with epilepsy....it's a tough road..but there will be better days....one of my son's has seizures similiar to your son....i'm on kgaccount....also my hubby's account cdfoakley Bless you all!
kgaccount 2 years ago
Oh two children with Epilpesy. Double trouble. How are they doing? I hope its under control
Best wishes.
kplowman 2 years ago
good move leaveing him on his side after that just let the sezure pass ive had epilepsy since i was 3 im 19 now still get it from time to time your mind is right there you can think its jut the rest of your bad acts like it has a mind of its own
silverbeast75 2 years ago
silver hope your epilepsy is ok.
kplowman 2 years ago
why is he wearing hearing aids
rslnvss 2 years ago
he is wearing hearing aides as he is hearing impaired . He has a moderate to severe hearing loss. His hearing loss is moderate at the low speech frequencies and severe at the high speech frequencies. This means he doesnt hear s, p, t, f type sounds without his hearing aides very well. We can speak to him without his hearing aides in a quiet environment and he will get most of what we are saying but will just get mixed up on similar sounding words.
kplowman 2 years ago
Oh boy, that's hard to watch. He's a beautiful child and I pray that he improves. Best to you all....
KoolWire 2 years ago
Bless his heart! Best wishes to you all.
izzielondon 2 years ago
How is he doing now?
iCarly032991 2 years ago
doing ok, but sitll not controlled unfortunately.
kplowman 2 years ago
Poor sweet kid, he shall be in my prayers.
StarMario1000 2 years ago
is he doin any betta? i really hope he is.
flyingknife123 2 years ago
He is doing ok. Still not under control after 1 year. Going to hospital in 2 weeks for some Video EEG monitoring to try and get to the bottom of it. They thought it was generalized epilepsy but are now thinking it might be partial/focal.
kplowman 2 years ago
i hope he gets betta. :)
flyingknife123 2 years ago
Thanks for sharing. We recently experienced this with our two year old son for the first time. We were so scared and uneducated about how often this can occur with children. We thought he was choking. Thank you for sharing.
supersteamer 2 years ago
Hope your son is doing ok.
kplowman 2 years ago
ugh this video made me cry. i really hope he gets better. good luck. :)
flyingknife123 2 years ago
OMG, must be a scary experience even watching a seizure..best wishes to u and ur family from germany!
Bitchhunter 2 years ago
Oh Luke you scared mummy and daddy!!!
He's adorable.. I hope they seizures are controlled soon ♥
birthingbabe 2 years ago
he;s adorable :( hopefully what he's on now [Epilim?] will help controll his seizure's compleatly
Mousegirl913 2 years ago
thks. He is currently on Frisium / Keppra and Epilim. The keppra isn't really helping. Before the keppra he was on Zarontin which I think was doing better then the keppra.
kplowman 2 years ago
somewhere between 00:17 to 00:19 seconds you can see his eye's cross and his seizure start. Just wasn't sure you were aware of that.
suekosa 2 years ago
I have had a grand mal seizure and my husband and son told me it lasted for over five minutes. I could not hear anything during my seizure, until I was in the ambulance. I am on Epilim. I am a Mum with four children and my oldest son was the one who saw me have mine. After a seizure you feel so weak, so dis-orientated, and so tired. I hope Luke does not have to suffer this for the rest of his life and his condition improves.
Miriam2421071 2 years ago
Hope your seizures are under control Miriam. Still haven't got Luke's under control yet. But he is doing ok.
kplowman 2 years ago
What causes these seizures? It must be horrifying having to have this happen...
B10PUNK 2 years ago
how olds he how bad is it
lookyouabigailkriby 2 years ago
Luke is 3. He has started taking medicine to make them stop. They haven't stopped yet but he is having less now and doing well.
kplowman 2 years ago
how are you are you ok hop you are well how the family
love abigail kirby
xxxxx give my kiss to luke
lookyouabigailkriby 2 years ago
he 4 now , was 3 then. Hes doing ok.
kplowman 2 years ago
Best wishes to all of you.
PersimmonOX 2 years ago 20
thanks. He is doing fine now. Not totally undercontrol yet but getting there.
kplowman 2 years ago
Brain chip - CHECK MY SITE.
bpyjktgiuk 2 years ago
that was so scary!! I can't imagine what you were feeling. Poor little guy! How is he doing?
munkyhunny210 2 years ago
He is doing ok. Started Epilim that day and seizures are now starting to reduce and hopefully will be under control soon.
kplowman 2 years ago
Hi Mom and Dad:
Until I had experienced this I would have questioned why you would post this.
Now after my son experienced his first and hopefully only seizure last week....your calm inspires me. At first I thought he was dying it was a little more severe than this in that he was blue for a good 2 minutes but today he is fine :) EEG today so we await results.....this is also a chance for my husband to have a small taste of what I went through.....good luck to Luke.
rinkmommy 2 years ago
Thanks. How is your son doing?
kplowman 2 years ago