Ellie

[Elliesmom]

Hello everyone,
I am new here....I am looking for information on myoclonic seizures. My daughter, Ellie, was diagnosed with myoclonic seizures at 9 months old. She was initially started on Topamax (the seizures remained-about 8/day), we then added Keppra. She was maxed out on both meds without any control. We are now weaning the Keppra, have also started Klonapin, Vit B6. She has had 2 eegs, which showed multifocal myoclonus with a normal background, a MRI as well as blood, urine, and a eye exam. So far, all results are normal. We are currently waiting to find results on the DNA seizure panel sent to Boston, Mass. Unfortunately, the seizures continue. However, developmentally she is on track and is a feisty one year old now. I can't describe the fear....it feels as though I could reach out and touch it. I am interested in the vitamin and minerals, however her neurogist who is the director of a Pediatric Epilepsy at a major Children's Hospital, did not seem particularly interested in that route. Currently the plan is to try to bridge her to Depakote. Any thoughts, suggestions, or ideas, I am open. Looking forward to getting to know all of you better. I have been looking for support lots of places.
Thank you

[speber]

Sorry to hear your little one is going through all that. I hope things get under control quickly!

You have come to a good place full of friendly folks who can relate. There are many parents of children with epilepsy as members here!

You sound pretty well-informed, but check out Epilepsy 101 if you need a refresher...it's a good place to start!

Peace
Speber

[CJR]

I am a Mom to a newly diagnosed 10 year old daughter. I wish that I had any "real" info to offer but we are still waiting to see a neurologist...ANY neurologist. Since I can't offer any medical help I thought I'd tell you that I can relate to the fear.

It's overwhelming! It's the last thought at night and the first in the morning. The silent prayer that says, "Please let today be seizure free." And the constant nagging worry, "Are the Meds working? Is there a better way? What More can I do?" It's non-stop. Being here has really helped me "deal". I have a feeling that you've found the support that you've been looking for. I know I did.

[RobinN]

Hi Ellie's mom -
I also have a daughter that started having seizures at the age of 14. She is now 16 and I think we are seeing the light at the end of the tunnel. She is not on any meds at this time, and we are currently doing neurofeedback therapy. She does have a nutritional plan that limits the types of foods that she eats, she takes a handful of vitamins. I am not holding my breath, but I am certainly hopeful that we have found some answers. I did not find this with the help of any doctor. I found most of the information here at CWE

So WELCOME and I hope your questions are answered too.

[brain]

Ellie's Mom

Welcome to CWE! And sorry to hear
about your daughter. However to
give you a jump start ... I hope this
website can assist you:

Epilepsy, Juvenile Myoclonic - from eMed

and another one:

Pediatric Early Myoclonic Encephalopathy - from eMed

Feel free to browse around and
make yourself a home here!

[Bernard]

Hi Ellie's Mom, welcome to the forum.

Across the pond they use Piracetam for myoclonus. I'm not sure if they use it for pediatric cases, but you might ask Ellie's neurologist about it.