Topic: Parents & Caregivers

Created By: Maksmoma | 2015-06-11 19:34 | 316 Views | 2 Comments

I was just told by my 3yo's neuro that he wants to admit her to the EMU for a few dahays. I am very nervous and worried about this. Has anyone had this experience with a their toddler? How did...

Created By: suzer18 | 2015-06-05 14:47 | 409 Views | 2 Comments

Hello, my son has seizures at night and they have never been under control.  However I thought we were beginning to get them a little bit under control because he was having maybe 1-2 or 3 at the...

Created By: Moondrop | 2015-05-28 19:55 | 489 Views | 0 Comments

Hi,

We just got back our genetic test results for our 4 year old son. He has a gene variation in KCNT1 gene that causes Nocturnal Frontal Lobe Epilepsy/ (EIEE). 

He hasn't had any...

Created By: Ginjam | 2015-05-28 04:52 | 453 Views | 1 Comment

Hi My 20 year old son was diagnosed with Epilepsy in February this year, and has been prescribed 200mg Lamotrigine which makes him feel sick, he isn't eating properly and he has no appetite and...

Created By: Riley's Dad | 2015-05-25 19:05 | 513 Views | 1 Comment

Hi Everyone.

My daughter is Riley.  This is her story:

When Riley was about 5 weeks old she began having a seizure like episode where she would space out, her hands and feet would...

Created By: Chanchan | 2015-05-25 15:42 | 639 Views | 2 Comments

Please help. My son (almost 14) has been diagnosed with idiopathic generalized epilepsy with random tonic clonic seizures. We started him on Keppra and his seizures have continued despite repeated...

Created By: karbhari | 2015-05-19 19:10 | 423 Views | 1 Comment

My daughter is 13, she has uncontrolled epilepsy, has 3-4 seizures a day , out of which one is a long duration one where we need to give her the midazolam puff to control it. He is on 4...

Created By: IsMiseTommy | 2015-05-19 02:26 | 359 Views | 0 Comments

I am the caregiver of a 28 Non-Speaking Autistic female, She has a history of a seizure disorder in infancy through early childhood her last mentioned grandmal  seizure was when she was about 5 to...

Created By: kerausmommy | 2015-05-16 13:44 | 469 Views | 2 Comments

Our son was started on Keppra exactly one month ago when he was about 10 months old. He wasn't gaining weight, babbling, chewing, crawling, trying to stand. After started the medication he is...

Created By: amanda.lewis@buzzfeed.com | 2015-05-15 21:07 | 400 Views | 0 Comments

Have you ordered CBD hemp oil online and found it ineffective? I'm a journalist, and I'm looking into companies that sell CBD Oil online that actually contains little to no CBD, as the...

Created By: Little angels | 2015-05-12 09:19 | 426 Views | 1 Comment

My daughter was just diagnosed with Dravet syndrome. She is 14 months old and when we go outside she has myoclonic seizures. My Dr. told me about these special sunglasses parents use on their...

Created By: kadenlove | 2015-05-11 16:44 | 438 Views | 1 Comment

Lately my three year old son has been waking up from naps and going right into a seizure it starts off as a focal seizure lasting as long as ten minutes and sometimes transitioning into twitching:...

Created By: Ellyn Newman | 2015-05-11 15:16 | 357 Views | 0 Comments

Hello, my 16 yr old Autisitc son has been seizure free for 2 yrs while on Trileptol.  Our Dr. wants to start tapering his med.  We are terrified to start this.  Any advice?

 

Created By: whitneyaliceon@hotmail.com | 2015-05-11 11:42 | 435 Views | 1 Comment

My 22 month old daughter has always, always had her seizures in the evening, before bed time. As far as we know, she has never had one in her sleep, until this past week. It has always been a fear...

Created By: robertsjad@hotmail.com | 2015-05-11 01:58 | 720 Views | 0 Comments

My son is 6 yrs old and when the school year started he was doing well. I had his medication changed from a liquid that he had been taking for yrs to a pill  started having seizures add any pill...

Created By: lauralove5 | 2015-05-09 20:52 | 350 Views | 1 Comment

Hi, I did the modified Atkins diet with my eldest son 7 years ago.  He had absence seizures that were not typical and they started when he was 11.  He ended up having terrible reactions to EVERY...

Created By: arcraft0326 | 2015-05-09 19:56 | 485 Views | 1 Comment

My now 15-yr old son had an MRI done Feb 2014 because he had been suffering from frequent headaches.  The MRI showed he has Cortical Dysplasia of the left frontal lobe involving the superior and...

Created By: Toastita | 2015-05-07 15:10 | 413 Views | 0 Comments

I have a new positions called Pediatric Epilepsy Patient Navigator.  I work with parents who's children have been recently diagnosed with seizures.  I would appreciate any suggestions or...

Created By: mommyLeBay | 2015-05-06 18:28 | 383 Views | 1 Comment

My daughter is 14 months old. She had an eeg that showed seizure activity on the right side of her brain and since she was admitted for having possible seizures they put her on keppra immediately...

Created By: kerausmommy | 2015-05-06 02:35 | 366 Views | 0 Comments

I am interested in hearing experiences with infants. What kind of seizures did he/she have? If  they were more subtle seizures, how did they act? Crying, jerking, etc.? Did it affect their overall...

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