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Teenage daughter with JME

Wed, 06/24/2015 - 09:14

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

CHOP prescribed keppra which

Submitted by just_joe on Wed, 2015-06-24 - 17:45
CHOP prescribed keppra which is becomming the go to medication for seizure control.  At the other hospital they took her off keppra and put her on depakote. They both work. With seizure control being the thing needed what most people do not realize is a medication that works for one person may not work for the next. The same with dosages. The first neurologist was doing what he thought was the best by increasing the dosage. The neurologist will generally prescribe a medication he knows is working for one of his patients and at that dosage. It does take time for the body  to get used to the medication and about 2 months after prescribing it the neurologist will have the patient come back for an evaluation. They then ask if the patient has have any more seizures and how many at that time the dosage may be changes either increasing it or decreasing it. Oh and too much medication is just as bad as too little. You see I've been there done that. When I moved from California to Dallas I took all the paper work done in the hospital with me since I needed a neurologist in Texas. He went over the paperwork and his first question was "How do you wake up in the morning". II told him with an alarm clock. He then told me I take enough phenobaritol to put the average man to sleep for 24 hours. In other words I have a high tollerance to medications. So for me a low dosage would not do much if anything for controlling my seizures. I currently am taking the maximum dosage of keppra but I also take a low dosage of vimpat. I couls say my seizures can be considered controlled since I am having a seizure every 8-14 days and those seizures are seconds in length. I had one in mt GP's office and he didn't say anything about it since he didn't think the 2-8 seconds space in a conversation I was having with him was a seizure he thought I was trying to find a word to use in the sentence I was saying. I do want to thank you for wanting to help other and yes help is needed. I just wish there had been a site like this when I was diagnosed with epilepsy. But back then there weren't computers. We hadn't put the man on the moon yet.. I do hope your daughter gets her seizures under control. Joe PS do keep an eye on here since dosages are set with weight in mind so any large weight gain can make the theraputic levels change. Also hemoroidal changes can cause a seizure. You can find lots of posts in the women with epilepsy forum

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