From complex partial to grand mal to now drop seizures/atonics !!!!!

Yep Aadi our son is now geting atonics - almost 12-15 a day and few of them are very strong, he's fallen few times and hits his head onto the floor at the same spot- he's now got a soft spot on his head. His seizures in June 2011, started with eyes rolling up face twitches and that's it, progressed to grand mals- head, legs , hands all shake tho under 1 minute and now since 3rd of Feb he gets atonics.....what is happening !

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Permalink Reply by Raymond DiNitto on February 14, 2012 at 12:12pm

You need to contact your doctor.you should also get him a helmet to where. That soft spot needs to get looked at STAT!

Permalink Reply by Carla Evans on February 14, 2012 at 8:09pm

I agree a visit to the dr. is needed. They probably need to do an EEG or MRI.

There are seizure pads that hospitals have for the sides of beds to make sure no one injures themselves on the bedrails. At home that might not be as practical as they aren't made of breathable fabric incase of scootching nose & mouth up too close (in the hospital monitorswould go off for respitory changes).But Target or babies rus USA east coast is carrying a brand of breathable baby bumpers set that might be useful to you. I haven't used them, but just recently saw them.

The helmet is probably also a good idea. Can AAdi tell you anything about how he feels right before the drop seizures? Like does he get dizzy or hear thunder in his ears or get a metal taste in his mouth? My son's recent seizure had his dilating before the seizure, an adrenaline response is what neurology said.

May you both have a restful Valentine's day.

Permalink Reply by Shalinee Murishwar on February 14, 2012 at 8:32pm

Thank you both yes we have 3 helmets now. Monthly visit to theneuro is round the corner....he's added another med for the time being Frisium here in India. He is also onhomeopathy simultaneously but God is in control as nothing v do seeems to make any diff. Carla aadi is not able to tell much also just before a drop he seems absolutely fine rather even enjoying himself. The last drop was day before we wr with some pals n the kids wr enjoying a snack the boys that they r they wr all over laughing hanging out n then even less than a second n he was on d floor. How old is your son and how is he doing- what kind of E does he have.....hve a blessed day both.

Permalink Reply by Kari Lynne Brauer on February 21, 2012 at 11:17am

Shanilee,

I can possibly help you with your son and teaching you a way to help him control those drop seizures. First I need to know if he has any warning signs at all, even the slightest one!

Ask him questions like; Before you go into a seizure does the inside of your body feel different than the outside? Or do you feel light headed or dizzy before the seizure comes on? Does his fingers, arms, toes legs twitch before a seizure? Does his face tingle before a seizure?

I can help you because I used to have these same symptoms and I learned a trick that doctors will not tell you about.

Permalink Reply by Shalinee Murishwar on February 21, 2012 at 7:37pm

Hey Kari ! No I've asked him many times he does not get any auras the atonics-drops happen like a flash anytime without any warnings. The g'mals mostly come right after he wakes up or even in sleep. He is unable to say much n I doubt he gets auras....can u share more pls.

Permalink Reply by Kari Lynne Brauer on February 22, 2012 at 11:39am

Sure,

I don't know how well this will work since he does not have any warning signals of any sort. Well, I guess I'll start by giving you a little back ground so you will understand where I am coming from.

When I was a teenager is where I start to remember my seizures, even though I was born with epilepsy. My parents and doctors all thought differently than I did about my seizures. Basically they thought I should be put in a group home for my own safety. I refused to listen or reason with them, because they would never listen to me. So I decided I had to learn to do things for myself. I set some goals and went to work learning more about who I was, how my epilepsy was apart of me and how I was going to overcome it. The summers were the worst times for me because of the heat. I would all of the sudden start convulsing, drop immediately! My eyes would roll back into my head, shaking uncontrollably. It seemed like forever before it would end. Afterwards, my head would hurt, my eyes burned like crazy, my muscles were soar, I could barely move. My heart felt like I had just ran a marathon!

One of my goals was to not let my seizures control me. At that time the reason was the fear was so strong each time I had a seizure. I felt like death was overshadowing me. I needed to regain control somehow. After coming to a conclusion I realized I did have a very slim warning signal. I bought a watch, I realized that I had one small twitch on my right arm for 30 seconds before my seizure hit. All this time I thought that twitch was all together with the whole seizure. I had 30 seconds to focus my thoughts on where my surroundings are,30 seconds to sit down or lay down. I preferred to sit against a wall or something solid, it made me feel more secure. I started to remember after coming out of my seizures where I was, I was not as lost.However the fear during the seizure still grew stronger. I needed to find another way to see my elf through these seizures. A thought came to me one day. "Mind over Matter".

How could I possibly do mind over matter with a seizure? As I was in my room one day listening to my radio. I was singing along to a song I liked, it clicked, that is it a song! I need a song I know really well, something simple....My parents had sent me to church all of my childhood years and I was still attending Sunday school and church. A little bible school song came back to me " JESUS LOVES ME", perfect, I had learned that years ago as a little girl. Simple, yet effective.

So I practiced a routine on my good days so I would be ready. I had 30 seconds to focus where I am at, to sit down against a wall and start singing. The first attempt was extremely hard, but I kept after it, kept singing that little song in my mind "JESUS LOVES ME THIS I KNOW". After a while I started to notice the fear was disappearing, I was gaining control of my mind by singing that song in my mind. I started to notice changes in my seizures. My eyes stopped burning afterwards, my focus started to return more quickly as well as my strength.

This is one of many things I have learned from trial and error that works. I hope you can find something out of this that will help your son. I am a full fledged believer in GOD. I don't know where you stand, but Prayer is your most powerful tool!

Feel free to talk and visit with me anytime, I'm around! Keep SMILING!

Permalink Reply by Shalinee Murishwar on February 22, 2012 at 7:24pm

Thanks Kari v r believers too n only prayers are sustainng us. We know we r under a strong attack, all of a sudden at the age of 9 with little rather no warning or symptoms earlier I childhood....justdoes not set in makes no sense. Spoke with a lady today her daughter too has lennox gastaut but she from childhood had challenges, left side of the brain was under developed. We're having revival meetings at church for 3 nights m praying for a breakthrough which may not be a miracle but surely a start. Kari Aadi has to come out from this.....the warfare has to end. Victory has to be His, always is....just that the devil is here to steal kill n destroy but v will overcome. I will surely speak to Aadi he knows God loves him n is taking care of him, he's a sweet kid n loves our Lord. I will also inbox something to u during the dayn you will then be able to see clearly how this warfare is in our lives currently.

Permalink Reply by Tony Murray on March 23, 2012 at 11:28am