Hello! New here

[KatymomtoA]

Hello everyone! Just wanted to introduce myself. I'm Katy, mom to Andrew, 5. We live in Alberta, Canada. A few weeks ago, Dec 27, Andrew had a series of several seizures, non stop. Started with some kind of simple partial I believe, then led to complex partial, then tonic-clonic. At least I think that's what they are called. I could be wrong. I'm so new to this. For well over an hour. When we got to the hospital ER by ambulance, I heard the Dr call out he was in "Status". A few days ago when I had some time, I did a little research and realize what the Dr's meant was (I think?) he was in a state called Status Epilepticus. Dr's had a hard time stopping them, but eventually, after going through the usual drug protocol to stop seizures and none of them worked, intubated him and put him under some kind of anesthesia that did slow down, and then stop the seizures. After Andrew was in recovery, the ER Dr admitted to me that he didn't think he was going to be able to stop him from ceasing. That scared me. How can a child with no prior history, have a series of unprovoked seizures that were hard to stop just out of the blue? My husband and I are still kind of shell shocked over all this.

I've been reading alot here this past week or so and this seems like a very friendly and informative place to be. I will share Andrew's whole story over in the Nursery forum as soon as I get a chance. Just looking for some support and a shoulder to lean on as we move forward. Nice to be here! I look forward to getting to "know" you all better. Thanks for having me.:hello:

 

[masterjen]

Hi, KatymomtoA and welcome to CWE
You sure went through a frightening ordeal!! What kind of treatment is Andrew on? Has he seen a pediatric neurologist/epileptologist yet?
Wishing the best for you and your son, and I look forward to seeing you around the forums.

 

[KatymomtoA]

Masterjen-thanks for your reply.
Andrew is not on any medication yet. We, along with his Ped decided to hold off on medication since we thought this was his first seizure. (ok, very scary, long set of seizures). Looking back now, we can think of at least one other time, about 6 months ago. Scared the crap out of us. We didn't know at the time what was happening to him. We were on holidays, staying in a cabin far away from a hospital, but we were very close to calling 911. He came out of it confused and irritable, and then slept straight until the next day. (happened around 3pm) I woke him up to check on him and give him fluids, otherwise he just slept.

He's scheduled to have a sleep deprived EEG tomorrow afternoon. They tried to get him in sooner, while he was still in the hospital, but that was impossible. Waiting list is way too long. Gotta love living in a smaller city. Ped prescribed him Midazolam for a rescue medication. To be given at the 2 min mark, if he starts seizing again, to hopefully prevent it from going into status, if it was to happen again. No he hasn't seen anybody but the ER Dr, and a pediatrician while in hospital. They performed a CT scan and everything looked good. He does however have a small subarachnoid cyst on his brain. Do you think that could of caused his seizures? The ER Dr said it probably isn't anything to worry about.

 

[valeriedl]

I had my first seizure in 2003 when I was 27 and I was status. Luckily I'd been spending the night at my boyfriends house and woke him up shaking the bed because I was having a tonic clonic. I was rushed to the hospital and had to be put into a coma. I was kept in the coma for over 2 weeks before they were able to get my brain to clam down (if that's the right way to put it) before they were able to bring me out. I know it scared my family to death not knowing what was going to happen. Luckily I haven't had a seizure like that since.

I've tried several meds and dosages through the years and I'm still having seizures but not nearly as many and not as bad. After most of my seizures I'll fall a sleep and I'll usually sleep the next day too.

There is no history of epilepsy in my family and I didn't have a concision that could have it brought it on. The drs still don't know what caused it.

It's nice to meet you!

 

[masterjen]

Masterjen-thanks for your reply.
Andrew is not on any medication yet. We, along with his Ped decided to hold off on medication since we thought this was his first seizure. (ok, very scary, long set of seizures). Looking back now, we can think of at least one other time, about 6 months ago. Scared the crap out of us. We didn't know at the time what was happening to him. We were on holidays, staying in a cabin far away from a hospital, but we were very close to calling 911. He came out of it confused and irritable, and then slept straight until the next day. (happened around 3pm) I woke him up to check on him and give him fluids, otherwise he just slept.

He's scheduled to have a sleep deprived EEG tomorrow afternoon. They tried to get him in sooner, while he was still in the hospital, but that was impossible. Waiting list is way too long. Gotta love living in a smaller city. Ped prescribed him Midazolam for a rescue medication. To be given at the 2 min mark, if he starts seizing again, to hopefully prevent it from going into status, if it was to happen again. No he hasn't seen anybody but the ER Dr, and a pediatrician while in hospital. They performed a CT scan and everything looked good. He does however have a small subarachnoid cyst on his brain. Do you think that could of caused his seizures? The ER Dr said it probably isn't anything to worry about.

I would suggest pushing to see a pediatric neurologist, or preferably epileptologist (neurologist who specializes in epilepsy). The seriousness of the seizure your son had warrants a proper evaluation. Glad to hear about the sleep deprived EEG happening quickly, and that you have been given a rescue medication to give your son in the event of another prolonged seizure. I hope you will keep us all posted as to how it all goes, and what the results show.

 

[KatymomtoA]

Valerie-Wow! Thank you for sharing your story. 2 weeks kept in a coma. That's some serious Status you went through! I'm so glad you pulled through. I bet your family was terrified for your life. I look forward to seeing more of your posts in the future.

Jen-Thanks for the advice. It means alot to me. It gives me somewhere to start-a pediatric neurologist. I assume I would ask our family GP for this referral?

Well it's 12:19am here and he's hanging in there. Staying awake. Getting really tired though. I'm a little worried the sleep deprivation may trigger a seizure. He was slightly sleep deprived the morning of Dec 27. Not sure if that contributed to his ordeal, but of course it makes me wonder.

 

[masterjen]

Yes, your GP would be the one to ask for a referral. If for some reason your family doctor is not willing to make the referral, try going to a walk-in clinic to see a family doctor there. Research ahead of time who seems to be a good pediatric neurologist (again, preferably an epileptologist) as you may be able to specify the name of the specialist you would like to see.

 

[Nakamova]

Hi KatymomtoA, welcome to CWE, and big hugs to you and your family.

I hope Andrew can get seen by a specialist soon. Definitely push for a referral so you can get an experienced neurologist on the case.

Sometimes the primary cause of seizures is clear -- recent head trauma or an infection like meningitis -- but most of us with epilepsy never figure out the primary cause. In Andrew's case, the subarachnoid cyst that could be related to his seizures but it would be good to have more information about it. Many people have arachnoid cysts that never become symptomatic, but the ones that do are most likely to have the symptoms show up in childhood. If Andrew's cyst is located near the part of the brain where his seizures originate, it might be playing either a primary or secondary role.

Fatigue is the most common secondary trigger, so it might have contributed a bit to your son's seizures. It's why the docs use sleep-deprived EEGs as a way to induce epilepsy-related brainwave patterns. (As distinct from the initial cause of the seizures -- known or unknown -- a secondary trigger is a physical, physiological, emotional or environmental stressor that pushes someone over that seizure threshold). Hopefully the EEG will provide more info that can point to what's going on.