Community Forum

Topic: Parents & Caregivers

Created By: Kathy McMahon | 07/2018 | 0 Comments

Hi Community,
My 7 year old daughter has focal seizures, often at night time. She makes very little movement, typically throws up, spikes a fever and has great difficulty breathing. She is...

Created By: Ribbons4acure | 07/2018 | 0 Comments

I live in TN and care for my 11 month old grandson with epilepsy. (chromosome #15 disorder) His parents have to work so I take care of him from 7am til 3pm. 5 days a week. Two days a week I drive...

Created By: Beata1986 | 07/2018 | 2 Comments

Hi everyone! I have a 5 year old girl who has been on Keppra and Depakote for about a year for her Absence seizures. It was all such a shock to me when she was first diagnosed that I just agreed...

Created By: Lmom89 | 07/2018 | 1 Comment

My daughter got her first seizures a little over a week ago. She was twitching sometimes on one side of her body, then both, and her eyes always kind of lean to one side and up. She had an EEG (it...

Created By: ebrown78 | 07/2018 | 2 Comments

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...

Created By: Alyf | 07/2018 | 1 Comment

Help! I have a 16 year-old daughter who was diagnosed with epilepsy at the age of 9. Her epilepsy is well-controlled by medication, which she is refusing to take. She has had seizures over the...

Created By: ChelseC | 06/2018 | 0 Comments

Hello Everyone,
Hope this finds you and your kiddos well! I am a speech-language pathology masters student at Eastern New Mexico University and am running a research project on children with...

Created By: MartinaDM | 06/2018 | 2 Comments

Hello! I am new to this forum and I am looking to see if anyone has had experience with what we are going through right now. My 3-year-old daughter had grand mal seizure that turned into status...

Created By: amandawright2829 | 06/2018 | 2 Comments

Hi. I'm so new to this and we haven't got a clear diagnosis yet. My 15 month old son goes to the pediatric neurologist on Friday. I just wanted to say what's been going on with him...

Created By: koj624 | 06/2018 | 0 Comments

Hi. I have never been on a forum before. This site was recommended to me by my daughters Neurologist. My husband and I are in our late 60's. Our daughter is 29yrs old and she will...

Created By: Bellasmom725 | 06/2018 | 0 Comments

She has nodules 20 or so from her occipital horn to her temporal lobes on both sides. She has seizures and is on two different seizure medications keppra and oxycarbazine. She is also blind in her...

Created By: akms66 | 06/2018 | 1 Comment

I was wondering if anyone has advice about what they have done to prevent seizures in their child around the time of vaccination?

Created By: Momof2e | 06/2018 | 1 Comment

Hi everyone. This weekend my three year old son had what could only be seen as a seizure in my eyes. He had just fallen asleep when I heard crying in the monitor and a coughing/gurgling noise. I...

Created By: Ewagner410 | 05/2018 | 1 Comment

Hello everyone. My wife and I have a 5 and half year old son who was a 26 week premie. Our son has a VP shunt and unfortunately contracted bacterial meningitis in the hospital when he was 7 weeks...

Created By: nj_mom | 05/2018 | 1 Comment

My 10-year-old son has just been diagnosed with Benign Rolandic Epilepsy. The doctor has put him on a low dose of Keppra and Vitamin B6 at night, unmedicated during the day. We never knew he had...

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 | 2 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...

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