Epilepsy Sucks - Sean's Battle with Severe Epilepsy

[ElvenLovePro]

About 2 months ago or so I started having seizures. I am 19 and it scares me. So far it only happens at night when I am falling asleep and sometimes in my sleep. I am glad to have my fiance, but he doesn't fully understand it either. I need to make an appointment, but I guess I am afraid of what they will say or if they will just say I'm making it up. I just don't know what to do. I am terrified they will start happening more often or during the day while at work or home alone. It is so scary..

[KarenSophia2011]

Hello. I am watching this video 2 years after you posted it. I hope that he is better now. Seizures and epilepsy is just annoying isn't it??? I am from Singapore and my son Mikkel is 8 and has drop seizures, evolving from infantile spams. He wears a helmet too. He hasn't stayed seizure free for more than 6 months so far.

Know that you aren't alone. Write to me anytime. Keep fighting. Our boys are real fighters! Keep believing and keep the faith!

God bless!!

[SassiDownUnder]

Sean is an adorable little boy! I really hope a cure will be found as soon as possible...not just for him, but for aaaaall the other people going through this!

I think Sean is a really strong boy, so is his family...i don't know your family, but it looks like you're all really really carrying :) I'm sure sean will be as adorable as a boy can be when he grows up...all the best to him and his family!!!! <3

[nemofishee86]

i wasnt going to post a comment but I wanted to let Sean know what a strong and courageous boy he is. My heart and prayers go out you him and your family.

[LinzBelle]

My heart goes out to you. I'm a 21 year sufferer. Luckily, mine are controlled. Has your doctor tried a combo of Zarontin & Depakote (generic names Ethosuximide & Divalproex)?

[LucyShy]

Aww hell you made me bawl with that one. Again. :P

[DawnHard]

Sean is special, and God has plans for him. What an angel. I wish my best for him, and bless you and your family. I too have epilepsy, and it does suck. ~hugs

[clydefav]

What an angel! All the best for your family

[Sofie007100]

Hang in there Sean, and parents. He's a remarkable little boy! My heart and thoughts are with you all.

[MrNemcova]

im 19 and an epileptic too :/.. im not that bad ... but it can still

get annoying .. im praying for your son :)

[mimo967]

be strong.. always took your medicine on time ok...i will always pray to all of you out there..

[allegrorules]

This is a truly touching video. I have epilepsy as well and was not able to attend most of school last year because they didn't want me to have seizures at the school. I understand or at least have somewhat of an understanding of what you're going through and I will keep you in my prayers.  Don't give up hope.....cure will come

[SuperGuitarQueen]

at 1:24 that bump looks very sore.

[tjsstj]

@SuperGuitarQueen It would of been. He had two drop attacks (Just falls without warning) and hit his head twice in the same spot. It was roughly 6cm high and 6cm across. Then it went down and he ended up with a nice black eye for his Santa photos that year.

[Pumanic]

Death from epilepsy must be quite rare in adults, but I understand if children are more at risk. Sure, an adult may drop from a greater hight and all, but we are built to be able to take some damage, children are not. Their kranium is softer, our bodies are more muscular, our bodies can hold more oxygen and all that.

I've had seizures, but don't have epilepsy, so I don't have any right to the medicine...I am however at peace with the seizures, and as long as I don't fall hard, I'll survive them.

[tjsstj]

@Pumanic SUDEP (Sudden Unexplained Death in Epilepsy Patients) affects adults too. It is like SIDS but in epilepsy patients - when no other medical reason can be found as a cause of death in those with epilepsy or seizure disorders. Bath time, driving, nightclubs etc they are all risks and I understand where your coming from in regards to height but I had a friend die from a heart attack following a grand mal seizure. He was 36. Good to hear your at peace with your seizures not many are.

[Kitty12440]

Awwwwwwww he's so cute I want to give him a hug :( :)

[crazyboafrog1986]

hey sean ** gentle hugs ** how you holding up these days ? i have seizures too have since may 2010, im on 4 anti seizure meds right now . sendz my prayerz .

[tjsstj]

@crazyboafrog1986 Still having seizures everyday, Sean is also on 4 medications a day soon to be 5. He is on epilim, rivitril, frisium and mogadon and will soon be on acetazolamide or something like that. He is doing better though :D Happy which is the main thing. How are you going?

[crazyboafrog1986]

@tjsstj im still having seizures too . im 24 yrs old . the 2 eegs i have had didnt show anything . they think its related to the childhood abuse & head injury as a infant ( i lived with my grandparents since i was 2 ) . im doing better than i was 6 mths ago though . ill continue sending prayers your way.

[LATMMD]

@tjsstj I don't think he should have to live with having those seizures. It's miserable and if he's suffering so bad like you showed here...yeah.

[crazyboafrog1986]

hey sean ** gentle hugs ** how you holding up these days ? i have seizures too have since may 2010

[genmama1955]

I'm an adult with epileptic seizures. My neuro has never suggested wearing a helmet, but after having head trauma, I am considering buying a helmet. I would like to ask if the cloth helmets work? Thanks!

[tjsstj]

@genmama1955 Yes cloth helmets are great. Seans helmet is a football helmet (Im Australian so maybe a rugby union helmet if your American) Weve also tried a ice hockey helmet (Protective but to heavy) and also a bike helmet (Light but not protective enough) Hope this helps and sorry its taken so long for a reply

[genmama1955]

@tjsstj Thanks for your information!

[lilmrcles]

I have 2 little angels of my own who suffer from seizures. They are painful to watch and tare my heart every time one of them has one. Luckily, my son, Brody who just turned 2 on the 26th, does not have them very often. But Savanna, my only daughter, my beautiful princess suffers daily . She has been on Keppra since she was almoat 1 1/2, but it does not help. Both Brody and Savanna have another appt. with the neurologist in Dec. I hope this one will help my babies! Good luck to you and him!

[tjsstj]

@lilmrcles If your on faceboook come join Kids With Epilepsy. Its a group I started and I think you and your family could really benefit. Sean has been on Keppra and it was good for a week after each increase but then he would start up again. Sean is currently on 4 meds but still having daily seizures. If you have any questions please just message me and I am happy to help. xo

[haleyandtwins]

Thanks for sharing your video. My daughter Haley has Dravet syndrome too! It is a terrible rollercoaster ride that we are all on. The IDEA League has been a wonderful organization to help me cope. Meeting other moms and dads (like yourself) who can understand our "normal" is so healing. You and Sean are in my prayers. Yes, Epilepsy and Dravet syndrome "suck"!

[christine62165]

OHHH MY what a handsome boy n so innocent...why? i will never understand why children get sick....i had seizures from the age of 1 - 4. i would say i was cold then faint n lacked oxygen...it was never confirmed thats what i had but it was said thats what i did.

[cessahbaby76]

I have a son who had febrile seizures when he was 1 1/2 all the way up until he was about to turn 3... then his brother had it once before he was 1. It will still freak me out if they had another one. This is definitely not something any parent can get used to. I will pray for Sean and all those who suffer from this. Thank you for sharing.

[tjsstj]

@cessahbaby76 Your right no parent can ever get used to it. Every seizure still breaks my heart, they are horrible to watch knowing that you cant do anything but wait. I hope that both of your boys no longer have seizures and that they never do again.

[Sramsey50]

I hope your son is getting better. My son died from seizures Feb. 20, 2010

[tjsstj]

@Sramsey50 Oh I am so sorry for your loss. Death from seizures is my worst fear for Sean and it is horrible knowing that their are parents out there who are living my worst nightmare. When you are ready you should make his life and his story a positive, help others who have epilepsy and spread the word that epilepsy can be deadly. My condolences go out to all of your friends and family.

[plushbanana]

I have a Conversion Disorder with seizures. it took them 2 years to find that. I do not have epilepsy. But I had to wear a helmet to go to school. They can look just like epilepet seizures some time. I have goten hurt a lot to even weearing the helmet .

[babyc1984]

This was one of the saddest videos I have watched. 2 months ago my 5 year son was diagnosed with epilepsy. I am still waiting for all the proper texts to try and determine what has been causing them. Nobody has told me to put a helmet on him, although he has cracked his forehead open twice now. My prayers go out to you and your family. You have a beautiful lil boy!

[tjsstj]

@babyc1984 I am sorry that your son is also facing this battle but please keep in mind that Sean has a rare and severe kind of epilepsy and your son's story may not turn out as bad as Seans. If you ever want to talk please message me or I have a support group on Facebook called Kids With Epilepsy we have over 2000 members and it is a great source for personal experiences.

[crazyboafrog1986]

Hugz & prayerz

[Nett1016]

All my best to you and your beautiful family. In the short 4 years that our 7 year old has been having seizures we have seen over 1100 of varying types. My heart out goes out to you. I pray that science makes some progress soon and brings peace to those of us too intimate with Epilepsy. Your Sean and my Bug could be brothers. :)

[tjsstj]

@Nett1016 Thanks Nett I really hope you son gets better control soon. In the past 15 days Sean has had 106 Tonic Clonic seizures and I am writing this from the hospital after Seans second admission in 2 weeks. I run a support group on Facebook called Kids With Epilepsy with over 1800 members. You should join us.

[utmanaren77]

Thank you for the good movie..sorry i hope you can understand what i whrite to you i am frome sweden...my girl is now 5 years and have epipelsy..i see my girl in your son..it´s so sad..

How is your son now?

[tjsstj]

@utmanaren77 I can understand what you wrote. Sean is 5 too and has been having seizures for nearly 5 years now. He has nine types. It is sad that epilepsy affects children, it is heart breaking and upsetting. Sean isn't the best, he has had 96 grand mal (Tonic Clonics) in the past 19 days despite being on 4 medications. We are going into hospital on Tuesday for IV steroid infusions again. How is your daughter?

[kittypride2]

Just for curiosity, How many times does Sean go to the hospital in just one year? My love and comfort are with you always...!

[tjsstj]

In 08 and 09 he went once a month for steroids just for the day. In 09 he was in 3 times in 3 weeks in June and once in October each time was for three days and once for 3 days to a childrens hosp for a Video EEG. Just ED visits was 6 in 09 In 08 he was admitted 7 times in 9months (Through my pregnancy with his sister) ED visits in 08 I think 9 times. We used to go once a week for blood tests and now at least once a month for appointments. Its roughly 1.5hr round trip

[cuddleslove1]

Oh my gosh =[

I am sooo sorry :(

I have epilepsy too. I usually have the absent ones, but I recentley just got diagnosed with it. I had a grand mal. Well, all my prayers go out to you guys ^_^ Hope he's feeling better

[tjsstj]

I am sorry that you are going through this rollercoaster too. It can be very hard and difficult but with the love of family and friends you can find the strength to get through.

[spiderwillkillyou]

Such a beautiful little boy. So sad.

[najk77]

this made me cry. i don't know what to say. i pray that there is a cure for this soon.

[tjsstj]

I am sorry I made you cry. I am just trying to get the facts about epilepsy and the battle people with epilepsy go through out there. I hope there is a cure too. Thank you for commenting.

[yitzchak10]

Our son Yitzchak has SMEI (dravet's syndrome) Its been hard. Stiripentol and Clobazam for the last 3 years has stopped daytime seizures.....but the effect of the night time seizures is still there. Everystory is different.  He is 13 this month. Thanks for your vid.

[tjsstj]

Dravet is very hard to deal with. We tried Stiripentol recently and it doubled Seans seizures. Sean's tonic clonics only happen at night which I am thankful for because he can't really injure himself but I would still prefer him to not have any. At the moment Sean is on Clobazam, Epilim, Nitrazepam and Keppra. I wish your son and your family the best of luck and health for the future.

[HomieOnTheBlock]

This almost made me cry.

[sgibbons3]

Drop attacks are one fat lip after another for my daughter (3) then the other seizures add their woes... And the regression is almost as scary as the seizures themselves.. My daughter is to the point where she can't do some of the things she could do at a year old.. It is heartbreaking. Right now she is on Keppra and Topomax... Your boy is adoreable! I hope they find a medacine combination to help!

[tjsstj]

Try Mogadon (Nitrazepam) Sean began that in July and he had his last drop in Sept. He is also on Epilim, Keppra Stripentol and Frisium. I know exactly what you mean about the regression, its very hard to watch your child suffer like that.

[pznpride]

I have epilepsy as well, you should try Lamictal, 400mg a day and that controls my epilepsy pretty good, i have maybe 2 a month.. When I was off it I was having 2 everyday. I am like 18 years older than him so he would be taking 400mg, there are side effect such as short term memory loss and clumsyness but its better than nothing and I wouldnt be able to type this if it werent for Lamictal. Please try it to help him, I am not a Lamictal advertiser I promise. But I do pay 600$ a month for it..

[tjsstj]

Thank you very much for your advice. Unfortunetly Sean has Dravet Syndrome and Lamictal makes him worse. His seizure count sky rocketed when we trialled him on it. At the moment he is on five meds - epilim 800mg a day, stiripentol 500mg a day, keppra 375mg a day, mogadon 15mg a day and frisium 5mg a day. Thank you again though for your comment and I am thrilled that lamictal is working so well for you.

[konomi89]

Learning about seizures in my healthcare classes (in Dental Hygiene school) is interesting, although it is a terrible thing to suffer from. I will keep your little boy in my prayers! Stay strong!

[S10cmptr8]

This video...really, really made me cry. As a person with this horrible ridden disease, I look back on my life and wonder was that how I acted when having a seizure?

[kittypride2]

He looks so sweet and precious at 1:55

[tjsstj]

Thank you, I know one mum on the Kids With Epilepsy Group on Facebook that I run has a son with tuberous sclerosis, maybe you could pop by and say hello. epilepsy is not fun whatsoever. I wish your daughter the best health for her future.

[amysarahh]

I will go on Facebook and check out the group. Thank you. My 14 month old started having seizures at 5 months old and that is what diagnosed her with TSC...they were complex partial seizures and just recently she developed infantile spasms. Vigabatrin controls the spasms but after 6 months being seizure free the seizures came back and she has very small partial seizures...they are seconds...the Keppra really helps but I think it is adjusting it.

[tjsstj]

Well it will be great to see you there, make sure you say Hi. I am 99% sure her name is Hanna Brown and her son is Harvey.

[herkulezzz]

Truly touched my heart! I can only hope you guys find the right medications/combination of medication so that Sean can live Seizure free!

[tjsstj]

Aww thank you very much. So far we have tried a combination of 13 different medications and at the moment he is on 4 but so far nothing is helping him at all. He still has numerous seizures everyday, sometimes in to the hundreds but I still hope and pray that one day a miracle will occur and all epileptics will be cured. Thank you for commenting.

[kkshortiekk13]

ohh, poor thingg.

he is so cutee.

[kittypride2]

What was the lump on his forehead?

[tjsstj]

He had a drop attack which is where he literally will just drop to the ground with no warning and a small bump came up. Then around 15mins later he had another and hit it in the same spot and that was the lump that resulted. It was 6cm wide by 6cm high.

[TheLauraclarke]

Your video is very powerful. Your son is a very brave and beautiful little boy. I am reduced to tears. My son suffers with febrile convulsions (they say) and am awaiting a scan to find out more, its the worst feeling in the world knowing that you have to let the episode run its course and that there is nothing at all that you can do other than to ensure they are safe. It seems like he is very fortunate to have a wonderful mom.xxxxxx loads of love

[tjsstj]

He is very brave indeed. He also began with febrile convulsions that were quite severe and your right there is nothing worse than watching your child suffer knowing there is nothing you can do but wait. I wish your son the best for his future. Take Care xo

[nicolamacdonald88]

Your video of your beautiful little boy really hit home. I have a brother who also has Dravet, he is 18 now. There are so many daily struggles and i pride my mum on how she does so well. I wouldn't change him for the world, she has also made a video about him. Your video was just like looking back on Craig when he was little, numerous seizures and countless changes in medication.

[tjsstj]

I have actually watched your brothers videos and I am friends with your mum on Facebook. It seems like she couldn't have done it all without the support and love from her family so give yourself a bit of credit.

[kittypride2]

Sweet little smile! :)

[juliexxx14]

May God Bless You little one and may you live ur life happily despite of this. I hope you could find a cure to your seizure... God is good so dont loose hope He will help you and you'll get better someday... Like they say " there's always rainbow after rain..." =) I wish u all the best honey..

[tjsstj]

Thanks for that, it was beautiful! I hope one day his seizures are better controlled but unfortunetly the type he has (Dravet Syndrome) he will never grow out of. He is a very happy boy apart from this, I dont think he realises that it isn't typical for everyone to feel the way he does.

[4dOp]

I want to die

[tjsstj]

I don't know if your joking or not and I seriously hope you are, but why do you want to die? Life is never that bad, although its extremely tough sometimes, there is no reason to want to die. I had a close friend of mine commit suicide and all it did was create pain, loss and devastation for those left in this world without him. If your being serious and you want or need to talk then please message me.

[Heyde1979]

@4dOp why would you want to die life is too short

[angeldoll33]

My heart goes out to you, I know too well how hard it is, my daughter also has Dravets. This is a beautiful tribute to your little man. I am looking at videos of myoclonic status (thanks for posting about that too), as I think she is in it right now, and found this. Take care, and I hope Sean is doing well! Hugs!

[tjsstj]

Your more than welcome. A big reason for me posting his seizures on here is for seizure classifications. I found it so hard (and still do) when he would have a new seizure and I didn't know if it was this seizure or that seizure so to speak. It got to the point where every specialist appt I would take in a new video and say Whats that? I also have a group on Facebook called Kids With Epilepsy, feel free to join us for daily chit chat! Its a great support with nearly 600 members.

[chapmanluvskassie]

good luck my heart goes out to you

he must be a strong lil kid

you must be very proud

[tjsstj]

I am very proud of him. He is a very strong and brave little boy and has dealt with more in the past 5 years than most in a lifetime. The strange part is, is he doesn't know he has epilepsy. He doesnt remember the bigger seizures and the smaller ones dont seem to faze him and so for that I am very thankful. Thank you for the luck, we need all that we can get.

[chevs911truth]

My nephew has epilepsy, he just turned 2 they give him Keppra, I wounder if they can get epilepsy from any of theses vaccines "they" make mandatory for us to take. Do Some reseach on vaccines PLEASE FOR OUR CHILDREN , FLOURIDE, ECT. . THANK YOU

[tjsstj]

Sean's first seizure was caused by tempreture, which was in turn caused by a routine 12month old vaccination so yes, I do believe there is a link in some cases. Sean is still on Keppra, although his dose has been reduced due to behavioural issues. Sean still has seizures everyday, often up into the 100's. I wish your nephew and the rest of your family the best of luck for the future. If you need support, I am always here to talk to. Take Care.

[Togg525]

Wow, I've never though that Epilepsy would be that big of a problem. One of my friends in school has Epilepsy, but he lives a normal life, like all the other kids..

[tjsstj]

It can be a very big ordeal if the person who has it has no seizure control like Sean. Some people are very lucky and can get great seizure control with medications, diet changes or even surgery but unfortunetly my son isn't one of those. Actually I am writing this from the hospital because he had over 20 seizures yesterday and despite med increases he is still having them. Keep an eye on your friend because IF his seizures return he is going to need a great friend for support.

[juliexxx14]

I have a question how do u know if u have seizure and can u get it in born??? or sometimes it does happen even when u didnt have it in born?

[tjsstj]

You can have epilepsy from birth or you can get it anytime. Sean was one when he had his first seizure, but I have many friends who were older. Head Trauma from car accidents, strokes, falling etc can cause epilepsy. Some people know they are going to have one they can feel sick, see colours, taste or smell something etc. It depends on the seizure type but more often that not it is from other people seeing it or not being able to remember, having sore muscles mouth wounds etc. Hope this helps.

[alissaduke88]

I'm an EMT/Paramedic in USA, and I feel very much for children and adults who experience seizures. My heart is with you and sean, all the love and best for him and his family.

[tjsstj]

Thank you very much, that means alot :)

[lallypop9]

Thank you to both you and sean for sharing this video on Dravet syndrome. I know 2 girls who both have Dravet and i have watched them both go through hell whilst their bodies endure seizure after seizure after seizure. Both the girls i work with have started stiripental and 1 of them has been status free since commencing it (she averaged staus fortnightly) Other things that have reduced seizure activity inc Ketone diet and Frisium,.VND was not successful. best of luck to u & ur little man.

[tjsstj]

Sean also has status every fortnight which is a hard thing to watch. Thank you for sharing the information on the meds too. Sean cant go on the Keto diet because he is also autstic and only eats brown food and Frisium is our next med choice. I wish you and the two girls the best of luck for the future.

[wendme]

your a cutey pie sean god bless you

[woolburn]

Hi, sean

My son is a dravet too. I'm french and i'm an artist. I'm a partner of french fondation IDEE. Raphael has a three terapies. Dépakine, Urbanil, and the last pillule the stiripentol. Raphael has 4years. 1 seizyre per week minus of 3mn wiht stiripentol.

Sorry of my english,

See you soon, Sean,

Régis Pavy

[MTSProductions]

Im sorry to here about Sean. I have had Epilepsy from a very young age, not as young as Sean, but i know alittle bit what Sean is going through. my wishes will be with him