I am trying not to Dr. Google...

wiggyslilsis · May 2013

So does anyone have experience with seizure disorders? What are the different kinds and how do they impact the life of the person who has them? The doctors were talking about different meds and stuff but I want to know how it impacts daily life.

I just don't want to go about googling this and freaking myself out over nothing but I do want to prepare myself for just in case this wasn't an isolated incident. Especially since I can't think of anything at all she could have gotten in to.

skreedrake · May 2013

I wish I could help put your mind at ease! Unfortunately, I don't have any experience with this type of thing. Hopefully, though, everything is okay and Ava Nichol makes a full recovery with no more episodes. ((BUG HUGS))

tdmd09 · May 2013

Honestly, and I mean no offense by this, talk to the doctors about it. Dr. Google will not be helpful and just freak you out, and the brain is infinitely complicated and I doubt anyone who hasn't examined your daughter's specific case will be able to answer your questions. The impact on daily life will depend on her specific condition (if one exists) and what specific medications she's on, as well as the dose, and how well she tolerates them. It's too complicated for google.

wiggyslilsis · May 2013

I will definitely be talking to her doctor about it both at her follow up at the pediatrician and the follow up at the neurologist. I just like to have an idea of what we could be getting into ya know and sometimes personal experience is more informative and less scary than trying to look stuff up. I know nothing about seizures or what the different disorders could be. I guess I am just looking for a little bit of knowledge because I am driving myself crazy.

Madeline-I didn't know that peoplecould have epilepsy and manage it with minimal medication so even that bit of information helps me not feel so clueless and overwhelmed.

I am irritated that I don't know anything about seizures like somehow I should have known to study up on them before it was something I became so emotionally attached to.

Thanks for your responses guys. I know I need to just wait and talk to the doctor and not get ahead of myself but I have to do something to keep myself from losing it. I have anxiety that I keep under control with the help of a therapist but it is times like these that I probably could use some meds because I am this close to losing it. I keep myself calm by making lists developing questions and becoming informed so maybe a better question is does anybody have any ideas for what I should ask her doctor?

Venti29 · May 2013

I don't have any advice, I just wanted to say I'm sorry you and your sweet girl are going through this.

How has she been today and yesterday?

tdmd09 · May 2013

wiggyslilsis:
I will definitely be talking to her doctor about it both at her follow up at the pediatrician and the follow up at the neurologist. I just like to have an idea of what we could be getting into ya know and sometimes personal experience is more informative and less scary than trying to look stuff up. I know nothing about seizures or what the different disorders could be. I guess I am just looking for a little bit of knowledge because I am driving myself crazy.

I understand and I'm the same way. But trust me, any personal stories you hear are going to be totally irrelevant because seizure disorders are very individual. I worked with neuro patients (including seizure patients) for almost 3 years and continue to in the ER, and I have seen a very wide variety of severity and management. It really depends on what part(s) of the brain are impacted, what medication is effective (there are several, and sometimes they need to switch medications around several times in order to find the right one) and the dose. I will tell you that some seizure medications can make patients more sleepy, but again, it depends on the dose, the medication and how the individual patient tolerates it.

wiggyslilsis:
I am irritated that I don't know anything about seizures like somehow I should have known to study up on them before it was something I became so emotionally attached to.

Seizures are not very common. I certainly wouldn't expect you to know anything about them.

wiggyslilsis:
does anybody have any ideas for what I should ask her doctor?

I would ask about when they would do any follow up EEGs, when to pursue medication if it's indicated, what to do if it happens again, possible environmental triggers to look out for, what impact do they expect on her everyday life (activity restrictions, etc.).

JulieSmiles · May 2013

My niece has had seizures since she was 13 months. Educating yourself about them is the best thing to do. She was on medications for years to control them. Some ones that I remember were depakote, tegretol and then she had one that was only administered if she had an episode of seizures. Since she had seizures (200+) over a week, it really affected her development. She was able to get into a specialized school where they knew all about epilepsy. They even offered courses for families to take to learn the different types of seizures and how to respond. It was awesome for me. For her, fevers will bring on sizures still but that is it. She is 14 now. She has other issues not related to the epilepsy but is healthy.

wiggyslilsis · May 2013

Thanks everyone for the concern!

Venti-she has been great today just a little cranky since her schedule has been thrown off and she is extra needy/attached today I think because she is still a little freaked out about what happened.

Tdmd-thanks so much for your perspective and advice. I decided to look up information on seizures to prepare myself for her upcoming appointments but I stuck to credible medical websites. I am glad I did because I think I understand what happened more but I am not convinced of the reasoning that she got into anything. It seems like she had a tonic seizure not a petit mal so I will be bringing that up. I am definitely going to be asking about follow up testing. Again thanks for sticking around and talking to me.

NotMrsSmith11 · May 2013

tdmd09:
wiggyslilsis:
I will definitely be talking to her doctor about it both at her follow up at the pediatrician and the follow up at the neurologist. I just like to have an idea of what we could be getting into ya know and sometimes personal experience is more informative and less scary than trying to look stuff up. I know nothing about seizures or what the different disorders could be. I guess I am just looking for a little bit of knowledge because I am driving myself crazy.
I understand and I'm the same way. But trust me, any personal stories you hear are going to be totally irrelevant because seizure disorders are very individual. I worked with neuro patients (including seizure patients) for almost 3 years and continue to in the ER, and I have seen a very wide variety of severity and management. It really depends on what part(s) of the brain are impacted, what medication is effective (there are several, and sometimes they need to switch medications around several times in order to find the right one) and the dose. I will tell you that some seizure medications can make patients more sleepy, but again, it depends on the dose, the medication and how the individual patient tolerates it.
wiggyslilsis:
I am irritated that I don't know anything about seizures like somehow I should have known to study up on them before it was something I became so emotionally attached to.
Seizures are not very common. I certainly wouldn't expect you to know anything about them.
wiggyslilsis:
does anybody have any ideas for what I should ask her doctor?
I would ask about when they would do any follow up EEGs, when to pursue medication if it's indicated, what to do if it happens again, possible environmental triggers to look out for, what impact do they expect on her everyday life (activity restrictions, etc.).

All of this. I would add that there are many types of epilepsy that are very manageable with medications and do not affect the child's quality of life really at all, once you get them under control. So try not to worry too much (I know it's hard!) especially before you have more information.

ChicagoWeded2007 · May 2013

I know personal stories don't really mean much, but I had seizures as a child. (Just two as far as my parents know.) I was put on medication and they stopped and I never had one again. I had no lasting side effects. I hope your baby's seizure was just a one-time event.

ChicagoWeded2007 · May 2013

But speaking of poison, one thing that pops to mind is the flea medicine that we squirt on the dog's back. Do you think she could have touched the dog and then licked her hand?

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