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Teenage daughter with JME

Wed, 06/24/2015 - 09:13

on 3/31/15 I woke up to a loud bang thinking my daughter dropped something on the floor. When my husband and I bolt through the hosue to her room, we find her in a tonic clonic (grand mal) seizure. A week later we take her to CHOP and she was put on Keppra, which she did ok with for the month of April. We were given rescue medicine in the event we needed it for the continued clusters in the morning. The morning of 5/1/15 she had continued to have several clusters we gave her the rescue medication, which didn't work so she had another tonic clonic (grand mal) seizure. I took her back to CHOP they continued to up her Keppra as she continued to have clusters. It never seemed to work. They never did anything more then up her medication and give her 1 EEG throughout the month and she wasn't getting better. I went for a 2nd opinion at AI duPont in Delaware and they have made a great change for her. She's now off the Keppra and on Depakote. She was admitted to the hospital the 1st week of June for the week for a sleep study, another EEG, and much blood work. She is also currently scheduled for a MRI to rule out any other possible issues. So many things have come about and we have done the best we can. we continue to support this foundation adn work with others. I noticed many people are looking for conversation adn ideas on how to handle things. I am willing to help the best I can and talk about our expereince with JME. You can reach me at www.paradyse1849@aol.com. Good luck to all.    

Comments

Jim it takes time to see if

Submitted by Anonymous on Thu, 2015-07-30 - 19:31
Jim it takes time to see if things will be good without medications. Weaning people off can be done with lots of success but then there are people like me who will be taking meds the rest of my life. Depending on where the tumor was and how much damage was made will also let the neurologists know more. Please don't get too antsy and try and get her off before the time is right. Been there done that and it wasn't good.My epilepsy is caused by scared bran tissue. Thet scar tissue was caused by a hemorghage to the brain. That hemorghage was from a blow to my head which knocked me out for a few seconds when I was between 6-8. My seizures didn't start for about 5-6 years. As for getting off medications. I didn't work with my doctor and thought I was doing good since I had gone 6 weeks without meds or a seizure. But that was before I went into status epilepticus. They got me out only to have me go back into it again. Having 40 convulsive seizures an hour for about 12-15 hours can tear a persons body up. SO what ever you do please have her doctors telling you how much to reduce and when. I hope this helps Joe

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