A Whole New Chapter Begins

It isn’t like I thought life would get boring (or even normal or anything) but I could have lived with the seeing out of 2011 being quieter.

Tuesday we had Amandya’s neurologist appointment.  Dr Reardon assured here that he would be good with her seeing him until she is into her early 20s.  That made both of us go whew.  He also said that he would do an EEG (sleep deprived) that is coming up tomorrow at noon to see if she can start to be weaned off of her Keppra.  It is a good thing.

Wednesday she had her psychologist appointment and everything went well.

Wednesday night I got a phone call on the house phone from Adam telling me that one of his bud’s from high school moved back into town and he was going to hang with him for a while.  He might decide to stay the night and play music and video games.  I made sure I told him to call to let us know for sure if he was staying and he said yeah, sure, no problems.  He knows we worry and would much rather lock the door if he isn’t going to be coming home.

An hour later I got a call on my cell phone.  It was a very polite, very rattled friend from high school telling me that Adam had a seizure.  Actually, he said Adam passed out.  I went fishing and figured out that what poor Brenden was describing wasn’t passed out, it was seized.

His eyes were open and fixed
He was unresponsive
His arms were flexed and jerking.

I calmed poor Brenden down (all the while realizing that I’m supposed to be freaking out at this point.  I’m supposed to.  Normal people would be) and told him he did good and that Adam would be okay.  He said that he was going to give Adam a drink of some pop (Manzanita… Mexican Apple Soda) and bring him home in a bit when he was back to himself some more.  He didn’t end up waiting till he got back to himself.  Nearly, not quite.

Twenty minutes later (he lives a couple blocks away) Adam was standing in my bedroom doorway, lips absolutely white, eyes not quite focused.  He was semi coherent and complaining of being tired and having a headache.  He fell asleep on the couch to the Christmas tree lights.  He slept two hours or so and then started talking.

He remembers feeling pressure on his forehead.  He remembers feeling like he was getting one of his shivers/twitches and the next thing he remembers was his headache and Brenden trying to help him come around.

Since then he has had the feeling like something isn’t right.  Thursday he couldn’t remember where he was when he was sitting in the car with dad at the light at Walmart.  This is somewhere he hangs with his other friend and has walked many times on his own.  He couldn’t figure out what the ball park was when he passed it on the way home (again, something he passed all the time) and the field (easement near our house) looked all wrong and too empty (it hasn’t changed in months and months and then it is only that the grass is taller when there is normal rain).  He’s said that the back yard doesn’t look right.  The dog doesn’t look right.  Things are just kind of about a step out of time wrong.  Kind of like the polar opposite of DejaVu.  Hope (lady from Facebook) said it sounded like Jamais vu and it really does.

This had to happen when everyone is going on vacation for Christmas/New Years.  No doctors are any where around.  Eeesh.

So we are going to try making him an appointment with Amandya’s neuro (his old neuro) when we go in tomorrow for her EEG.  I won’t get lucky enough to get him in this year, but I guess that is to be expected.

Looking at his shiver/twitches (the ones that start at the base of his skull and sometimes make his face twitch… sometimes make both arms flex and twitch) I’m starting to think more and more that they are Myoclonus seizures.  He has brushed them off for the longest time, and said that as long as they aren’t affecting his day to day life adversely he didn’t want to see anyone.  Now he’s willing to see the doctor.

I don’t know if he will brush it off as nothing to be concerned with, or not.  I’m hoping he takes everything into account and really listens when it comes time to take Adam in.  And I hope we don’t have another tonic clonic event no matter how short (Brenden claims it was seconds).

It looks like December 21, 2011 is a lot like January 21, 2010… another day like no other.

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A Book In Progress

Well, I’ve now decided that it is time to get off my butt and get going on wide scale book writing.  I’m working on an RA book (rheumatoid arthritis) and have officially started “A Day Like No Other” about getting diagnosed with Epilepsy.

I would love to have people’s stories to add in.  I will gladly obfuscate your identity if you don’t want people to know who you are but want your story out there so other people can learn.

I can let you know how to get me your stories if you let me know you want to help.

thanks

=)

and from Kaitlin’s Cauze…

thinks without a brain the ta ta’s don’t matter. In Your Face Fact- epilepsy is as common as breast cancer and takes just as many lives. Let’s save the brain so we can find two cures!

Lights And Sirens…

I was driving into work yesterday and I passed several places where police cars were pulled over at broken down cars, accidents and/or speeders (not likely given it was rush hour… but maybe) and I noticed the light bars and their patterns and activities.  It dawned on me that (duh) we don’t have the bubble spinny lights on police cars any more.  We have computerized light bars.  They are totally cool and awesome if you are one of those INSIDE the car.

I understand that innocent bystanders (we serve and protect… ) probably don’t matter a whole lot and if you are not controlled in your seizures you aren’t supposed to be driving… but.. you know… there are passengers in cars driving past that people also in the cars care about… people who might be sensitive to the flashes…

There are pedestrians who are walking along the road or on the sidewalk who could seize and end up in the street.

It isn’t that I long for the good ole days (okay, okay, I’m getting to be old enough that sometimes I do… but not in this case) it is that the brilliant people who come up with these wicked cool toys that the emergency response vehicles have to help them in their pursuit of protecting all of the people need to realize that there are (GASP) people that they need to protect that they are probably causing harm to.

I understand that the good of the many usually outweighs the good of the few, but if we made the leap between the bubble light to the AWESOME COOL (sarcasm… sorry… I’ve been into the coffee this morning) light bars, I’m betting that we, as a people, could figure out how to pull over for something less apt to be seizure inducing than what we have now.

We put warnings on games.  We alert bicyclist that their flashy lights may be a trigger.  We try to alert people at Halloween and Christmas that strobe lights and rapidly blinking lights may be triggers.

And maybe, just maybe, these lights don’t trigger more than 1% of even those who have Photosensitve Epilepsy (see Wikipedia definition below), and maybe the ones that might be triggered aren’t Tonic Clonic (grand mal for those who know what they used to be called) but only absence seizures… SO what.  If one person is affected by the people who are PROTECTING the public… is it really worth looking wicked cool when you are serving and protecting?

Today, I’m going to craft my own letter to the local police suggesting that the light bars may be causing seizures.  I figure it will by my version of jousting at windmills, but I’m nothing (as many people who know me will attest) if not the champion of lost causes.

Photsensitve Epilepsy is when “seizures are triggered by visual stimuli that form patterns in time or space, such as flashing lights, bold, regular patterns, or regular moving patterns”

November… Epilepsy Awareness Month

Fact: Although many people do not have a physical experience of an aura, it is still a distinct part of a seizure.

This was a fact from October 30th…

I wonder… Amandya says she doesn’t have auras that she can remember… but she remembers so little surrounding her seizures.  I wonder if she has auras but just doesn’t remember that she had them before or that she has them when she has her seizures.

 

 

Nephroptosis and Nephropexy… the continuing story

So… I’ve managed to get my head back above water… I’ve slept a couple times… and I am getting a little more clear headed.  Time to pull together more of the story.

It took way longer than I would have liked to get Amandya into surgery.  In my head I know that they can only schedule surgery when they have openings and when they have doctors scheduled to operate.  But it took two weeks to get her into surgery.  In my mother’s head, that is about 9 years too long… but it is a mommy thing.

I don’t recommend the hospital.  Won’t name names, but the cafeteria was nasty, it took an entire day of not being able to see her post-op for them to get her a room (they were BOOKED SOLID… guess there was a rush on people even though she was scheduled to have to stay over for..well… two weeks) and we weren’t allowed to see her until she was in her room. Once she was in her room, I couldn’t be happier with the way they treated her.

The Nephropexy went well.  Four little holes in her tummy and her kidney was sewn fast to her insides.

Doctor came in to see her, explained that she was lucky it only took 9 months to really determine what was going on, it often takes far longer…. longer while the people with Nephroptosis gain a reputation for being overly dramatic, drug seekers (pain meds), hypochondriacs, attention seekers… because obviously nothing can be wrong… blood tests and normal x-rays don’t show anything and the symptoms don’t really point to anything.  The last patient Dr Geisler treated took THREE YEARS to diagnose.  I can’t imagine having to deal with the kind of pain that Amandya was dealing with for THREE years.  That is obscene.

Now… I have another flag in the air to wave.  This one has fewer followers because this is such a rare condition.

the “cure” isn’t such a complicated matter.

what I need to do is try to find a way to raise awareness.

The nephropexy was a success.  The holes were glued shut.  The kidney felt heavy inside of her where they sewed it fast.  But she is starting to be a semi-normal teenager again and it is wonderful to see.

The Eve of November

Here we are again… On the eve of Epilepsy Awareness Month.

Here come the facts and information!!!

Absence seizures

Definition: Absence seizures, sometimes referred to as petit mal seizures, usually look like a person is staring into space for a few seconds.

 

http://efactaday.com/index.php

From what I understand, absence seizures can actually resemble someone daydreaming or with ADHD.

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