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7 year-old daughter recently diagnosed

Wed, 07/04/2018 - 15:01
My 7-year-old daughter was recently diagnosed with epilepsy. She had her first seizure on June 8 about 30 minutes after she woke up. It was a tonic clonic, we called 911 and she was seen and discharged from the ER once she was stable. The following week she had an appointment with a neurologist and an EEG. The EEG was done on the following Friday so we did not get the results before the weekend. That Sunday we woke up to her having a seizure at 2 AM. It was under 2 minutes so we let her go back to sleep and watched her. Around 4:30 she had another seizure. We got her ready and she had another one in the car. Once we got to the ER she had 2 more there before they administered rescue meds. We were transferred to another hospital because they don't really have pediatrics at our hospital. She had 2 more seizures at the other hospital and was started on a loading dose of Keppra. They discharged us the next day and she was okay for 3 days. On the 4th day home and her last day of school, she had a seizure at school. We brought her home to rest and she had 2 more. We brought her back to the ER where they administered emergency meds. We transferred to another hospital where she was put on video EEG for 3 days. Her seizures are complex partial that generalize. We spent 5 days in that hospital and they put her on Zonegran and low dose Klonopin. She has done okay since we've been home. Still having some complex partials in the morning within an hour of waking but they have not generalized. Has anyone else had such a rapid onset? We're really hoping that the meds get to a level that will prevent all the seizures but are worried she won't. Thanks in advance :)

Comments

Many people find out that

Submitted by Amy Jo on Sun, 2018-07-08 - 16:44
Many people find out that they were having minor partial seizures long before a tonic clonic occurred. It’s just that little things like repeated deja vu get blown off, or kids don’t know something strange happened (can assume what they experienced is normal for everyone). Our child had complex partials that were like longer zone outs - she missed the bus at school or something and would backfill what she thought happened (e.g. school ended fast and she didn’t have time and somehow missed the bus or told me what she thought had happened during an assembly that I asked real questions about because I knew a lot about it or was there and there were only vague answers). The complex partials were the furst seizure we realized occurred. They were infrequent. Totally missed the simple partials that we thought were something else, those were frequent until the meds were started.

many people have other types

Submitted by just_joe on Sun, 2018-07-08 - 18:35
many people have other types of seizures and don't know they had them. A weird feeling in their hand, a muscle twitch in their arm. Mine were all avoided because they were seconds long. That was until I had my Grand Mal.OH keep track of the number of seizures she has and if there is anything different that day. Note them. Generally the neurologist wanted to find out how a patient is doing and they may set up a visit in 3 months. By seeing the number of seizures they can adjust the doses. For Mom and me it was a trial and error period but I saw Doc Ben at least 1-2 times a month. If you like the neurologist and have a good relationship with them then keep it and questions them For every question mine asked me I had one for him. Mom ad her questions and Doc knew  wanted answers too. If I ever had a weird or different seizure I called my neurologist. I have been with the same group of neurologists since 1970They all knew me since they all started as practitioners.If she is having seizures and her doses haven't been changes then call her neurologist and talk they may set up an appointment or make changes over the phone.

Have they done an MRI? Are

Submitted by RTLEmum on Tue, 2018-08-14 - 11:30
Have they done an MRI? Are you at a Level 4 epilepsy center? Do you have a diagnosis for her? What did they find out from the video EEG? Where do her seizures originate? What part of the brain?

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