Epilepsy questions answered...

Thanks for those that asked questions about Epilepsy. I'll try to answer them as thoroughly as I can...

What exactly causes a seizure?
A seizure is caused by an abnormal electrical response in the brain. There are lots of causes of seizures which include structural brain abnormalities, metabolic disturbances like low blood sugar, infection, brain injury...


Is it your brain shutting down?

No. A seizure happens when there is an abnormal electrical surge.

In Emeric's case, are seizures the main symptom of epilepsy or are there other attributes of the disease?

I hope I'm understanding this correctly... Epilepsy is defined as having 2 or more seizures that are not provoked by something like a fever. People with epilepsy are more likely than the general population to have learning disabilities, mental retardation or other health problems and these can be a direct result of the seizures affecting the brain but it may also be due to side effects of medication.

In Emeric's case the Epilepsy is considered symptomatic which means there's something causing the seizures. You could also say he had a seizure disorder because really seizure disorder and Epilepsy are pretty interchangeable. Emeric's other symptoms like low muscle tone, heat intolerance, reflux, etc. are not caused by the seizures but by a metabolic condition. This metabolic condition also causes his seizures.

I hope I understood this question correctly and answered without too much confusion! :)

Can a person with Epilepsy live on their own, or do they need to be supervised?

A person with Epilepsy can live on their own and many do. It really depends on how well their seizures are controlled with medication and the type of seizure they have. For example, if someone has brief absence seizures that last 10 seconds or so and don't cause a loss of consciousness there wouldn't be a real danger posed by being alone. However, if a person frequently experienced tonic clonic seizures or drop seizures which causes a person to lose muscle tone and fall to the floor there's a bigger risk for injury.

Mental retardation of varying degrees is common in Epilepsy and would be a factor in determining if someone could live alone. Mental retardation is very poorly understood and some people with mental retardation can live independently.

Also, are there different types of Epilepsy?

There are many different types of Epilepsy and many different seizure types.

Symptomatic Epilepsy is when there's an underlying cause for the seizures.
Idiopathic Epilepsy is the term used when no cause for the seizures is found.

Seizures are either generalized or partial. Generalized seizures occur when the entire brain is affected. Tonic clonic, absence(staring spells) and myoclonic seizures are generalized. There are many other types of generalized seizures but those are the most well known types. Emeric has atypical absence seizures which are also generalized and similiar to absence seizures but, you guessed it, not typical! :)

Partial seizures occur when one part of the brain is affected. Sometimes it's a very specific area of the brain and sometimes it's the temporal lobe or a larger area of the brain but not the entire brain. Partial seizures are sometimes referred to as "petit mal" and include complex partial seizures.

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Those are pretty brief answers but hopefully will explain a bit more about Epilepsy as I think most people have very limited knowledge of even what a seizure is. I know I did!!

Emeric's new bed

Emeric's bed was brought out yesterday and set up for us. They accidently ordered a full instead of a twin but were encouraging us to take it because they were already there and I don't think they wanted to send it back and reorder another one. So, they said if we had room to take it. It's HUGE. They had it ordered with padding which we didn't ask for but it seems easily removable and we'd asked for both sides to come down instead of having a solid wood panel on one side like you see. They might be able to fix that though. The head and foot also go up and down.

Epilepsy 101

I'm looking to put together a booklet on Epilepsy so I thought it might be informative if people had questions about Epilepsy that I could answer. So, feel free to ask anything and everything you want to know. I'm not an expert by any means but I'll do my best. No question is off limits, you can ask something relating generally to Epilepsy or specifically to Emeric if you want.

I plan on doing a separate post to answer the questions and include some of my own information! I'll also use the questions and answers for my booklet. I think I've done a post on Epilepsy before but as our Stroll for Epilepsy approaches in the coming months I'd like to focus on it a bit more!

Fire away!

Camping

Jake's extra-long long box worked nicely to pull our camper when I suddenly had a longing to go camping this weekend.

We headed to Itasca State Park where it was just a little bit cold. Luckily I was prepared with hearty lunch of grilled cheese sprayed with Pam instead of butter and BBQ chips. The first sandwich turned out a bit soggy and Jake offered to eat it. I gave it to Kylie and she ate it. The next few were mostly burned and Jake again offered to eat them but I knew if I waited for perfection we might run out of bread. Here he is making the grilled cheese:

Doesn't he look thrilled?

The rest of the day was spent hiking and playing.

(Does anyone else think these two are starting to look like twins? Kylie told Kaydence that she thinks she might have stopped growing.)

Hiking, playing, and falling in the dirt. Alot.

Unless you're on dad's back and then you're safe.

It was beautiful there but in late May there isn't much for blooming flowers so I took what I could get. Isn't that a superb dandelion?

Headwaters of the Mississippi River

Kylie wanted to walk over the rocks at the headwaters. She fell in shortly after which sadly I didn't get a picture of. :)

And a picture of my bifocals, just for you, Erin.

Lurning pay shense

The bifocals are up and running. My spell check apparently isn't. (see title of post)

It's only taken me a mere EIGHT months to figure out how to get 2 of the blood tests done that Emeric's doctor wants done. Between billing and transferring and blah blah blah it's been a pain to try to get it done. I think we've finally figured out how to get it done, where to get it done and most importantly how to get it paid for by insurance. Another trip to Fargo and approximately 6 weeks for results and we're looking at finally having these tests back by July sometime.

This is my life.

Seriously, I feel like my life revolves around hospitals, billing dept's, insurance dept's, blood, urine and therapy.

I shouldn't complain, we've actually had a nice break lately with testing but for the 2 seconds it takes to draw the blood it's another gazillion hours getting it all set up. Genetic testing isn't as effortless as say, getting a glucose level.

Excitingly though I finally broke down and bought my own fax/copier/printer/scanner machine and that will make things a bit easier because I can stop wasting my mother in law's ink and paper using hers all the time.

So, if you wanna fax me and make me feel super important just let me know first. I'm not fancy enough to actually have a different number so there are a few steps involved.

Just wait, a year from now I'll have my own lab set up in the basement. Mwah ha ha.

Kaydence fell asleep on the coffee table.

And yes, those are skullbones tattooed on her hand. LOL

Emeric before he got his hair cut, eating a tube of mascara.

Prone to wander....

I'm getting bifocals.

And this is how I feel about it.




Do you think it's possible bifocals are the "new thing" fashion wise for my generation?

Yeah, I didn't think so either.


Apparently my left eye drifts upward so my brain is working extra hard to keep my eyes focused. My poor brain needs a break from my wandering eye. So, because I need a prism to keep my eye from being disobedient and I need reading glasses the best option is bifocals. I do have 20/20 vision far away which I guess is worth mentioning.



Thankfully for me these bifocals aren't the straight line across but a circle. Yippee!



What's next, a scooter?

Check out this video

This video is of Landon, the little boy I have posted about before who has Mitochondrial Disease. The doctor in the video is Dr. Koenig, our doctor from Houston.

http://www.chron.com/content/chronicle/special/07/templates/listpop.html?mcVideo=22489826001

Stroll For Epilepsy

The Stroll for Epilepsy will be coming up August 13th this year in Fargo again. I'm recruiting team members that are willing to try to raise $100 for the Minnesota Epilepsy Foundation. If you'd be interested in being on our team please let me know right away! You don't have to be able to walk with us in order to be on the team either.

I will also be adding a link to my blog where you can donate if you'd like to or link to others who would like to donate!