Epilepsy Sucks - Sean's Battle with Severe Epilepsy

Sean has Tonic Clonics (grand mals), myoclonics, myoclonus, myoclonic-astatics (drop attacks) Non Convulsive Status Atypical Absences, complex partials and Absence Seizures. He has been diagnosed with Dravet Syndrome. His epilepsy began at the age of 1 when he had a Febrile Convulsion. We have tried Phenobarbitone, Lamictal, Tegretol, Phenytoin, Topiramate, IV Steroids and at the moment he is on Epilim, daily steroids and Keppra. He has seizures every day.

Category:

Education

Tags:

• Epilepsy
• Seizures
• Sean
• Grand Mal
• Tonic Clonic
• Myoclonic
• Injuries
• Medications
• Petit Mal
• Absences

[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?

[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

[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

[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 :)