i need some help on seizures

[geds]

Hi, could anyone give me information, i have 21 month old baby, who has been diagnosed with a thing called polymicrogyria, and has recently started taking clonic tonic seizures, i am finding this so hard to cope with, as she is so small, and theres nothing i can do to help her, she has took about 10 in the past 2 months, i feel anxious at all times, and dont sit down for following her, so she doesn't fall, will i ever get usd to this? the neurologist think she might be taking other ones but not sure, i have noticed some abnormal behavior, but not sure if they are related to her seizures,

her hands and feet go blue alot
she curls her toes
she goes very quiet and stairs at nothing
breathing changes suddenly
gets a rush of heat, and face goes red  for a few seconds
right side of body goes dead for 20 min sometimes

is any of these common? it also seems she takes seizures with the heat, but my neurologist say that is very unlikely.
p;ease someone help me.

Thanks

[Addie2U]

Hey -

No problem.  I now have a bridge and crowns due to people sticking spoons in my mouth, etc.  Education of what NOT to do, is very important.  Oh, and in case I gave you the wrong impression - my Dad wasn't ashamed of me . . . he felt shame because it came from "his" side of the family and I had to live with it.

Yes, some forms of epilepsy can be inherited . . . some aren't.   You might need to check back into your family trees and see if anyone has ever had epilepsy or seizures.  Some seizures occur due to undiagnosed diabetes - and have absolutely nothing to do with epilepsy.

I can not stress how important it is to find a great neurologist - it only took me 20 years, and once I found that doc, my seizures have been controlled.

Lastely, I was thinking of Sir Isaac Newton when I stated it was Albert Einstein that had epilepsy . . . but read the list of famous people who have suffered from epilepsy.  They are either at the genius level . . . but many are "creative" people.  I know my great grandfather loved to write .  . guess what?  So do I..

Vincent Van Gogh
Sir Isaac Newton
Napoleon Bonaparte
Agatha Christie
Charles Dickens
Alexander the Great
Danny Glover
Alfred Nobel
Michelangelo
Leonardo Da Vinci
Julius Caesar
Edgar Allen Poe
Aristotle
Theodore Roosevelt
Richard Burton
George Frederick Handel
James Madison
Martin Luther (not Martin Luther King)
Peter the Great
Sir Walter Scott
Socrates
Truman Capote

[geds]

Hi Addie,
              LOL. I think you read my mind! cause thats all i think about, if she can swallow her tongue or not,. so that puts my mind a bit at ease. and i can't believe Einstein had epilepsy, well at least theres 1 good thing that relates to it,lol.

Is epilepsy past on? one thing i can honestly say is, i am def not ashamed of her, i am so proud of her, she copes so well, and shes always smiling, i love her to bits, shes an angel, and i really believe that.

Thanks again for your reply's, there really comforting.

Take Care Geds                           P.S lol means( laugh out loud) in case you don't that. lol

[Addie2U]

Hey Geds -

One other thing . . . don't put anything in her mouth (I have bitten my tongue more times than I care to remember because people freaked out and would stick anything handy in my mouth).  Just roll her on her side and hold her gently in place.  Her tongue may be rolling back (she won't swallow it), but by placing her on her side, her tongue come forward naturally.

[Addie2U]

Hey Geds -

No problem.  I have refused to let seizures run my life, and never allowed myself to use it as an excuse not to accomplish something,  Also  . . . Albert Einstein had epilepsy - so I figured I was in good company.  I wouldn't call myself brillant - I'd say, probably more smart but lazy (in the teen years).

If you lil' girl is going to be stuck with epilepsy . . . find out as much as you can, so you'll be prepared to answer all her questions and embrace it; and also remind her that some of the most brillant and creative minds in the world, have this disease - so she's really special.

It all depends on how our parents react to it.  My Dad was ashamed because apparently the epilepsy came from his grandfather, so he felt so much guilt and shame for passing it on to me.  He never said that directly - but I could see it all over his face.  Finally one day, in my rebellious teen years I said, "Daddy - to feel guilt for passing this on to me, would be like wishing I wasn't born.  This is my cross - and if this is the worse thing I've got to bear, then I will consider myself blessed."  From that day on, he had a different perspective.

Helplessness goes with being a parent . . . even if she didn't have seizures - there are going to be times you feel simply helpless.  Awwwww . . . but my Pilot is God . . . I would have never made it without his watchful eye.

God bless . . . give the lil' one a hug . . . and if you need to talk, just send me an email.
Later gater,
Addie

[geds]

Thanks so much for replying Addie2U, thats really comforting, to now she doesn't know whats happening. Hope you keep well.

Take Care Addie.

[Addie2U]

WOW Geds, I feel for you.  I am 56, and have had tonic clonic idiopathic seizures since I was 14.  On my end . . . no big deal, 'cause I'm unconscious through it.  On my father's end, however, when I'd wake up, he looked terrified.  The only scary thing is when I had them and I was alone . . . there was no one to tell me what happened, why I was confused, etc. - so that was very hard on me.  BUT . . . I've been seizure free since 1989!  PTL!

I would say it's worse on you than you sweet lil' baby.  The things you've listed are quite common in tonic (the staring phase), clonic (the convulvsing/thrashing/eyes roll back/jaw clamps down) phase.  I don't know why your little one is having these, however, in some cases, as the children reach puberty, they have been known to grow out of it.  I hoped I was one of them . . . but not so.  But still . . . I feel blessed.  Yes, it's harder on the parents to watch.  I'll keep you and your little one in my prayers.