Sunday, January 21, 2018


Seizures have become an almost nightly occurrence. Hypersalivation, face frozen, choking sounds, gurgling, waking from sleep, scared. Lasting anywhere from ten seconds to almost three minutes, sometimes more than once a night. It's scary, and complicated, and I'll write more about it later. Needless to say we've all been busy around here. I know a little about seizures, given my connection to the CP community. I've even seen a few, but they weren't like these. 

And it's not what you think. It's not Elena. 

It's Vivian.

This week she was diagnosed with focal epilepsy. More tests are coming, and more information. 

Right now, we are managing okay. I've had some tough days here, a lot of sleepless nights, but today at least, I'm feeling like the bring-it-on, tough-as-nails, steeled-Mom that I know I can be. But if you know about seizure medication (she started Keppra, and we were given Diastat as emergency medication), or about seizures that have common elements to Vivian's (she is 9; no current known triggers after her first EEG; not expected to happen during the daytime) I'd love to know more about your experience if you'd like to share.


Catherine Mayer said...

While maybe not similar to Vivians seizures, my husband started having seizures around age 11, the doctor said the onset of puberty can allow an underlying condition to show through at that time. He currently takes depakote and clonapin, and has been seizure free since college. But most of that is due to the diligence of his parents finding the right neurologist. The whole thing is scary and the meds for seizures can have some serious side effects. the meds my husband was first put on left him unable to walk, and the neurologist was fine with that and told my mother in law that she should be too, because the seizures were under control. She ended up taking him to a specialist several hours away and they changed his meds. he has had complete seizure control for 25 years now, and is a fully functioning adult on his new meds.

My advice is that there are a lot of sub-par neurologists out there (We've run into a few since we've been married and moved a few times), so make sure you have a good feeling about the one you have. Seizures are scary, but so is a doctor who doesn't care about the overall welfare of your kid.

Anonymous said...

Hi Amy
I used to have seizures when I was little and I started outgrowing then when I was 12. Different scenario I have SDCP like Elena. Mom said I used to get them when I had a fever. So scary for you. I hope that you get it under control soon. I used to take depicane

Anonymous said...

I'm so sorry to hear that Vivian is having seizures. I don't know much about seizures because I am lucky enough to be one of the people with CP that does not have them. However people with epilepsy have told me that they often feel extremely tired after a seizure,and that seizure types can change over time. They tell me that they are often somewhat aware of what is going on during a seizure and like when people are calm and talk "normally" to them during and after said seizures. Some have auras that make them dizzy or smell things that aren't there, and if a person has auras they can sometimes learn steps to prevent a full blown seizure. Some of the meds might also make her dizzy so watch out for that! I think you told me you used to be part of "Braintalk Forum" They still have people who post about epilepsy there on this part of the forum:

Some people with Epilepsy are able to better relate to people with CP since both conditions effect the Brain so Elena and Vivian may become good support systems for each other. Make sure to keep both Elena and Vivian in the loop about what is going on with as much honesty as you can. Don't treat Vivian as "overly fragile". Let her do things in a fun safe way like before as much as you can. Let both girls express their feelings about the situation to you. Elena and Viv might both be scared but in different ways. I believe Epilepsy is considered a disability in the U.S so Vivian can get services in school and in college if need be like Elena. The people with epilepsy that I know are fully independent adults who work etc. Some drive.

Good luck and prayers to you all.

TheCzarsOf45 said...

Don't be hard on yourself. You have dealt with E, and her challenges. You can handle Vivian equally. You are ADAPTIVE. And E is V's closest ally. They share much in common in the brain. You are the best mom E and V can have, you own this. What does not kill a Preemie in year one, only makes Preemie tougher. I endorse this!!! I am CP to E's level, an active professional, I work hard like E does. I AM ADAPTIVE! So is Elena and her sister, she is a role model for Vivian and you.

TheCzarsOf45 said...

I also hope your knee is back to great. You're an awesome mom to both daughters. Don't think any less. No better Mom exists. My money is on you to be the best.

Anonymous said...

An alkaline diet is sometimes helpful (no gluten, no casein, no sugar, no processed foods) to limit the occurrence of seizures.