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Topic Title: Prolonged Complex Partiel Seizures
Topic Summary: Once you have one do you find they start to have more?
Created On: 03/21/2009 10:13 AM
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 03/21/2009 10:13 AM
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MomOfFour

Posts: 61
Joined Forum: 12/05/2008

Colin had his first prolonged seizure a week ago. The seizure lasted about 7 minutes. My husband thought it may have been closer to 10. The neuro gave us Diastat and told us to us it after 3 minutes. Before this his longest seizure was his first which was about 2 1/2 minutes. His normal seizures last about 15 seconds. The prolonged seizure happened in the night and the only reason we knew was because he cried out before it happened. I am nervous that he could be having more at night that we are unaware of. Do you find that once they have a prolonged seizure they start to have them more often? It makes me so nervous.
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Mom to Colin 5: Stroke in womb. Diagnosed with e at 15 mos. Failed trileptal. Weaned topamax (serious side effects). Currently on lamictal and zonegran. Other children: Jeffrey 8: LD and severe anxiety disorder. Kaitlyn 6: happy and healthy. Brett 5: PDD
 03/21/2009 10:24 AM
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CasaDe

Posts: 9446
Joined Forum: 05/19/2006

Very frightening! I'm sorry!

We started with prolonged seizures, so I can't answer your question.

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~Pam

Homeschool mom to 9-yr-old Einstein with AEOS/FLE on Depakote MONOTHERAPY!!! (tried Tegretol, Keppra, Diazepam, Lamictal, Topamax twice, Dilantin twice, Zonegran, Klonopin, Prednisone pulse-dose) and 12-yr-old Girlygirl.

The LORD is a refuge for the oppressed, a stronghold in times of trouble.
Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you. Psalm 9:9-10
 03/21/2009 11:18 PM
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michelle21

Posts: 4019
Joined Forum: 08/10/2005

Hi, So sorry this is going on. Is it a possibility to have some extended monitoring to determine if there are more nocturnals? If he becomes incontinent, is that occurring? We don't deal with partials, my dd's friend does though and they do seem to - not cluster, that is a technical term I guess, but the seizures happen, and then there is a clean stretch. Michelle

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I love pm's! Mom to a wonderful teen daughter with Absence Seizures.
 03/22/2009 11:31 AM
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adamsmom

Posts: 21605
Joined Forum: 05/01/2001

((((((((Colin & Mom)))))))))

So sorry to hear about the long CP for Colin. Hoping it was just a one-time thing for him!

We have had some long CP's here, but thankfully the majority have been his shorter ones!

Keep us updated on how things are going!

Hugs,
Donna
*heart/rose*
 03/22/2009 04:30 PM
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DoulaMomma

Posts: 160
Joined Forum: 12/29/2005

Unfortunately, our son's sz's have been growing in length. He used to average 2-3 min. now he averages no less than 8-10 minutes. I don't know why they have gotten longer but they have and they have been staying that way. Sorry I can't help you answer it, just wanted to let you know you are not alone in this.

-------------------------
Karen

VERY proud mother to:
JACOB (know-it-all who watches out for his brother and helps with Bo's E in any way he can)
BO (CP sz w/ GTC, SID, ADHD, DD, speech delayed, currently taking Concerta, Keppra, Lamitcal, Topomax failed. VNS implant 7-9-08, turned on 7-17-08. Keppra wean failed.
MAKENNA (Princess of everything, who har*****es her big brother any time she can to keep normalcy in his life)
 03/22/2009 11:30 PM
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MelaniesMom

Posts: 6
Joined Forum: 03/17/2009

My 8.5-month-old has had at least 8 CP's (in addition to head drops and probably some other varieties), and the shortest has been 4 minutes, the longest 50 minutes, with the "norm" being around 17 min. In our experience, they don't seem to get longer each time, but our neuro used a phrase in our first meeting in the hospital (while we were there after the 50-minute one: not prescribed Diastat yet): Seizures beget seizures. I have a feeling that if we didn't have some control with the meds, she would be having more, and maybe they would be getting longer. And they say anything longer than 5 minutes is an emergency, because that's generally the point where they start worrying about brain damage and also because the longer it lasts, the harder for it to stop itself. I'm just repeating what I've heard from our docs and nurses...

So, it's probably possible that your son's seizures could be evolving, but it could just be sort of a fluke-- like our 50-minute one. Her next one after that was under 5 minutes. I don't think seizures really like to follow patterns... ;)

The long ones are scary, but look how far you've gotten without one. That Diastat sure is a blessing. And if it helps ease your worries, my baby's brain is "beautifully normal," even after many prolonged seizures.

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Mom to Melanie (b. July '08) and James (b. June '06). M has seizure disorder since 4 months. Taking Phenobarbital and Topamax, used Diastat once.
Psalm 55:22 "Cast your burden on the Lord, and he will sustain you; he will never permit the righteous to be moved."
 03/23/2009 12:27 PM
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MomOfFour

Posts: 61
Joined Forum: 12/05/2008

Thanks everyone for all your replies. To answer some of your questions my nuero did not mention extended egg at this time. I do think it may be worth it. I guess I was getting my hopes up to much that the meds were working because he was about 3 weeks seizure free (for the last 3 months we were having about 6 a week). I just hope that he does not have another prolonged seizure!
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Mom to Colin 5: stroke in womb. Diagnosed with e at 15 mos. Failed trileptal. Weaned topamax (serious side effects). Currently on lamictal and zonegran. Other children Jeffrey 8: LD and severe anxiety disorder. Kaitlyn 6: happy and healthy. Brett 5: PDD
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