Well, so I posted this morning after he had a grand mal seizure.  Well things went downhill fast for my angel.

He was post ictal from that seizure for about half and hour, but I got him ready and we were heading off to school with his nurse in the van with us.  I was telling her about the seizure, but you see, we are so used to seizures in this house, that it doesn't keep him out of school.  Isn't that sad??

Anyway, so I look back at him and notice that his toungue is quivvering.  That is what he does when he is in Status.  For those of you who have never heard of that, Status is when their brains seizes non stop in a pattern until you can break that pattern and bring them out of it.  Status kills many epileptics every year because you can't break that pattern easily.

Anyway, so I tell his nurse to touch  his toungue to see if it stops.  If it is a seizure, it doesn't stop, if it is a muscle spasm, it stops when you touch it.  She said, it's not stopping.  Well, hell, we are 2 minutes from his school, where his medication is, and 7 minutes from home.  But no meds in the damn van.

So we go on to school and instead of messing with his lift, I snatch him up from his wheelchair and carry my baby inside and tell his teacher I need his meds NOW!!  I give him 10 Mg of rectal valium and just hold him.  You cannot give another one for 20 minutes to see if the first one works.  We we were having his IEP meeting so I held him while they all talked around me.  I kept checking his toungue and it wasn't stopping.  I didn't want to alarm everyone, so I just kept watching him and the clock

So at 20 minutes, I put him back on the changing table and strip him down and by that point they all know something is up.  I give him another dose and call the Neuro.  By this time, from the first seizure, he has been in status for over an hour.

His neuro told me to call 911.

So here comes the ambulance into the parking lot of his school and I carry him to the bay doors and they put him on the gurney and we take off.  We get to the ER and finally he opens his eyes.  But not for long. They get an IV, blood tests, chest Xray and head CT within 30 minutes.

He then starts seizing again.  They then give him more Valium and a bolus dose of Depakote.  All of this in his IV.

Finally, after 3.5 hours of constant seizing, he wakes up and starts crying and then like my Jack Jack always does, he smiles at me.

I know now that he will survive this bout with his terrible seizures, but what in the hell caused this crap???

So, we are going back to neuro tomorrow to find out the cause of his 3.5 hour seizure.

I knew something was coming, but seriously???  This was almost too much for him to take.  They have to find something to help my baby.

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Jun. 3, 2008 at 3:32 PM OMG how scary!  I cant even imagine what that must have been like for you.  I hope they are able to help your little guy

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Jun. 3, 2008 at 3:41 PM omg thats so scary I cannot even imagine what that must be like to go through ,poor little jack jack how frightening that has to be for all of you .

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Jun. 3, 2008 at 3:43 PM My prayers are with you and your family that they can some how help your little man!

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Jun. 3, 2008 at 3:48 PM wow, I am so sorry he has to go through this time and time again. My heart aches for him and you as well. I can't even imagine how you must feel to see your baby go through something like that and you can't do anything to help.  I will keep Jack Jack in my prayers.

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Jun. 3, 2008 at 4:53 PM Oh Susie! Poor Jack Jack! I know what's it like to watch your kid go through status, I"m never as calm as you sounded. I wouldn't be able to sit through a meeting! I hope they can figure something out tomorrow at his neuro appt. I won't type out another prayer right now, but know that I am definitely praying for you all.

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Jun. 3, 2008 at 5:39 PM Susie!! I am soooooo sorry!!! I love you and wish I was there to kiss my little buddy!! Give him loads of hugs and kisses from The Gainey's and tell him we love him! I am definitely praying for you and hope the appt tomorrow goes great. Call me after the appt and let me know what they say, I'll be home all day!! :)

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Jun. 3, 2008 at 6:03 PM I know there isn't words to make your day easier. I know because i too live these days often. When we wonder who much longer their body can physically take all the damage. I wanted to let you know that you are doing everything right. Hold him tight everyday and make sure he knows how much he is loved. I am sending prayers your way!

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Jun. 3, 2008 at 7:43 PM Oh Susie, I'm so sorry that this happened. I think about Jack Jack all of the time and keep hoping he'll get better and prove those docs wrong. I just wish they'd find something that would really work for his seizures!

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Jun. 3, 2008 at 8:20 PM I'm sooooo sorry he went through this today, but glad to hear he got through it...... Praying for JJ and your family, please keep us posted

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Jun. 3, 2008 at 9:30 PM

Oh Susie.....I cannot imagine the fear of what you endured today.But I can imagine the strength you have that will sustain you through everything you must face.You are such a wonderful mother.Jack Jack is one strong little man and he is amazing at how he continues to fight these awful attacks.Please know we are all praying for you and that you are cared for very much.


Amy and Lily

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