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status epilepticus (UPDATE!)

Mon, 10/02/2006 - 14:27

Topic: New to Epilepsy.com

Just wanted to update everyone.. it's been a busy last 2 days. Yesterday she had her MRI done and today we met with her neurologist (Dr. Casadonte - All Children's in St. Pete) and he says she has Landau-Kleffner syndrome.. Which the weird thing was a couple months ago before the seizures were even showing themselves I mentioned to the hubby about it! So next check up is on the 10th and he's thinking of sending us home with a portable EEG; Im sure that'll be fun. But her seizures definately look like they're calming down and her speech has been getting a little better and she's more attentive. :) Hopefully we're on the road to managing this... thanks for all the encouragement!!! Andrea > Hello everyone! My name's Andrea, I'm 28, married, living in St. Petersburg, and I'm sure you'll see me around here quite often from now! :) My 6 y.o. daughter was discharged saturday from the hospital as status epilepticus. For the last couple months we've been trying to figure out why her speech was deteriorating. One day we were out shopping and she tettered to the ground and had trouble holding herself up while her eyes were fluttering and rolling around. It lasted less than a minute and after she jumped back up and tore down the isle to look at more My Little Ponies. We took her to the ER and got the "well sometimes kids just have seizures"... exactly a month later another one happened. Her ped. saw her right away and referred her to a neurologist. Her VEEG was scheduled for last thursday and they instantly admitted her. She is continually having seizures, though it can be REALLY hard to notice them at times and she is usually active right through them. For the most part its either a stare or a couple eye blinks and then back to the world. Which believe me, trying to explain to dr.'s about what was happening got us quite the crazy stares! Even our neurologist is a little stumped by her, and he's been doing this for 30 years! Right now she's on Depakote twice a day and seems to be improving! Already her speech is a lot easier to understand. I was just wondering though if there are some things I should be watching for or any tips anyone had. She's got an MRI scheduled soon and will have a follow up with the neurologist on the 13th. Everyone says we're taking the news very well and like we've said we've been dealing with this for months and didnt have any answers.. at least now we're on a start with things!! Thanks for any information and I look forward to getting to know everyone! :) Andrea

Comments

Re: status epilepticus

Submitted by liz4143 on Mon, 2006-10-02 - 15:14

Hi Andrea, I don't have any answers for you but I am going through the same. My daughter who is now 7 yrs old was seen by the neurologis and diagnosed with childhood absence seizures. Unlike you I have not taken the news very well, at first I kept blaming myself for maybe being to strict with her at time and causing her to have epilepsy. I am feeling a bit better now that I found out that they do in fact run in my family. I still feel really sad sometimes because she's so little and going through so much already. Everyone keeps telling me and I know that it could be worse but I can't help all the worrying. My daughter will be starting Zarontin tomorrow as soon as the neuro calls in the liquid form because she will not swallow the pills.

Re: status epilepticus

Submitted by graceey on Mon, 2006-10-02 - 15:19

Andrea - I don't know if you have looked into it or not but I have done a lot of research about the Ketogenic Diet. This may be something you would like to talk about with your neurologist. Gwendolyn S. Walker

Re: status epilepticus

Submitted by Anonymous on Tue, 2006-10-03 - 08:53

While it sounds like a very difficult time, getting the EEG testing can certainly help know what you are treating and how! Here's a link to information on seizure emergencies. May help prepare questions for the doctors and think in advance of how to prevent/treat future problems.

www.epilepsy.com/info/exceptional_parents.html

Will be thinking of you! Take care,

Epi_help

www.epilepsy.com/info/exceptional_parents.html

Will be thinking of you! Take care,

Epi_help

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