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Community Forum

Topic: Parents & Caregivers

Created By: Ghamm229 | 05/2018 | 3 Comments

Hello, I’m new to this site as my 5 yr old was recently diagnosed with generalized epilepsy. I’m trying to understand how they diagnosis cane about and whether I should start her on meds or not as...

Created By: wmyatt | 04/2018 | 3 Comments

Hi, I am the parent of an autistic 15 year old that has seizures that result in very scary violent episodes. He is well over 300lbs due to meds. What will happen is suddenly out of nowhere (it...

Created By: Daizebra | 04/2018 | 3 Comments

Hello! I have never posted on one of these before but I need some advice. My son has been taking Keppra since March 17th( so about 6 weeks). He has 1.2mL twice a day. When he first started to...

Created By: Starr83 | 04/2018 | 2 Comments

Good Morning,
I’m hoping someone can help me here. Last week, my daughter had an eeg done because she’s been having slight twitching in her sleep at night. The nurse called me the day after...

Created By: VictoriasMommy28 | 04/2018 | 6 Comments

My daughter is 3 years old and just got diagnosed with Epilepsy.. she started having seizures Sunday, got diagnosed Monday night and has been having them ever since. It came on so sudden, and...

Created By: shylienicole | 04/2018 | 2 Comments

No idea what forum to post this in but maybe parents are best source. I am wondering if there is anything like Big Sisters out there specific to youth with epilepsy?I have it too and I think I...

Created By: Lwid510 | 04/2018 | 1 Comment

Hi all I’ve written on here a few times, my son has what is believed nocturnal seizures. He is on a Trokendi XR. The dr raised his meds back in January and for 2 months no bed wetting. Last week...

Created By: Sassy_5acd8fec0f380 | 04/2018 | 3 Comments

Our 27yr old daughter moved back home in the process of starting over when she had her first ever GM seizure, loss of conscience for 30+ minutes, EMT's, ER Dr all asked about drugs - blood...

Created By: Melanieyaz | 04/2018 | 5 Comments

Hello,
My son has very recently been diagnosed with epilepsy. 2 weeks ago he had a seizure in his room and fell and broke his 2 front teeth. I am so worried that I have even been making him...

Created By: BabiChar2 | 04/2018 | 2 Comments

Hi everyone, my baby was diagnosed with seizures when she was about 6 weeks old and she is current 3 months that is still having about 4 seizures a day. The doctors have put her on the max she...

Created By: Annakee | 04/2018 | 1 Comment

My daughter got siezures at 5 months old. She had about 32 to 38 in a 24 hour period. She was put on keppra and phenobarbital she stopped having seizures so they slowly took her off the meds. By...

Created By: nicki604 | 04/2018 | 2 Comments

So I have this question to everyone. My daughter had a dentist appointment checkup this morning for her cleaning and the roads were awful by us. Well they did her cleaning and then the dentist...

Created By: archaicsmiles | 03/2018 | 3 Comments

My son, Lucien, was diagnosed at 2 months with focal epilepsy. It's on the left hemisphere of his brain. Does anyone here have focal epilepsy? I'm totally new to this...new first time...

Created By: DPMoon | 03/2018 | 3 Comments

Hi - my 17 year old had her first and only seizure this summer. It was terrifying, but she received terrific care from first responders and Buffalo Children's Hospital. MRI, CT Scan and...

Created By: Jacob.C | 03/2018 | 1 Comment

My son has had multiple myoclonic seizures a tonic clinic seizure, and a partial. He is about to turn 10 months old and is currently taking 3.5mls of keppra with little effect. Has any...

Created By: nicki604 | 03/2018 | 6 Comments

So my daughters neuro put her on melatonin I think last month at 5mgs. It worked for a couple of days and then it hasn’t really worked. They put her on it for her to get a restful sleep, but her...

Created By: Effiesmommy | 03/2018 | 6 Comments

Hello, I’m new here! My oldest daughter is six and started having grand mal seizures out of the blue at six months old. She had 1-3 per day between 2-6 minutes long. We tried a few medications and...

Created By: Lwid510 | 03/2018 | 4 Comments

Finally after all the testing and describing different “episodes” and after an increase in anti seizure meds that made the bed wetting stop. The doctor diagnosed my son with non convulsive...

Created By: Tracey Chambers | 03/2018 | 4 Comments

My young teen daughter has been recently diagnosed with JME. She has all three types of seizures. She's only had two tonic clonic seizures about 6 months apart. She's been on depakote...

Created By: jenniferd | 03/2018 | 2 Comments

About 7 months ago my 15 year old started having clonic tonic (grand mal) seizures every 4 weeks almost to the day and time. She always has them about 20 minutes after getting. Up. They are at 5:...

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