Thursday, November 11, 2010

Epilepsy (long post)

Cut the dreads?!?!

Austen is debating joining the local law enforcement Explorers program. This would mean...(music please) cutting the dreads.  But he is not sure.

As unimaginable as it may sound for a child of mine, Austen thrives in paramilitary environments. His experiences with Scouts and Civil Air Patrol have proven this. But...these programs (Scouts aside/Explorers included) usually have an emphasis on career exploration. Careers..that Austen are drawn too. AND careers whose doors remain closed for Austen.

Why? Because Austen has epilepsy.

It is estimated that 3 million people in the United States are affected with seizure disorders today.

According to this article The Scope of Epilepsy and Seizure in the United States

The severity of epilepsy varies from person to person. In an ongoing study sponsored by the Epilepsy Foundation on the impact of epilepsy and the cost of the illness, several distinct patient groups were identified. In about 60 percent, no additional seizures occurred after one year. In an additional 15 percent, several seizures occurred over time, but eventually ceased.

And in an unfortunate subset, amounting to about 40 percent of the total epilepsy population, seizures persist despite treatment and are considered intractable.

40 %! That is crazy. My sister, Tania is one of those 40%. My son, Austen..appears to be in the 15% (we are hopeful, fingers crossed) but it is too soon to tell.

Today, I am sharing Austen's story.

Austen is our numero tres son. Other than a few minor concerns about his growth (or lack there-of) and some delays in walking. Austen was a healthy baby. In early pre-school years, the concerns started to grow. Austen was ALWAYS sick. Asthma, pneumonia and bronchitis...along with numerous allergies.

The Spring before Austen started kindergarten, my friend Cookie and I loaded all three boys into her car for a month long trip to D.C. and back. We camped and visited family along the way. We stopped in numerous museums..and Austen chatted non-stop about being an army doctor.

 When we visit the memorial wall in little boy stands still..for a very long time. I stoop down in front on him. He has been silently crying. Austen looks me straight in the eyes. This should not happen. I have to be an army doctor. Maybe some of these names would not be here if I had been there.  I dry his tears and think of his constant bronchitis. I assure him these men had doctors as well...but that I'm sure he will help people in the future. But first..don't you think we should start Kindergarten?

Austen started kindergarten wearing size 4T.  He missed often due to bronchitis. When he was in class, he was in trouble. The teacher did not know what to do with him. He was always day-dreaming, wandering off or running around the room. Once? He danced on the desk! Just before Christmas, it was agreed that Austen should try Kindergarten again in a year..and by the way the teacher says, we think he is adhd..please consider putting him on medication. Here is the name of a psychiatrist we recommend.

Austen came home. We read books, he fished. We played with horses at a nearby girl-scout camp. We cooked, we painted. We went to LOTS of doctors. Pulmonologists, allergists, cardiologists (his lips were turning blue)...and we went to an assessment center through our local university health system to see about the adhd concerns. I had my doubts..but something was up, that was for sure.

It was discovered that Austen was CAPD and maybe ADD. Meaning..he had been trying to lip-read in the classroom. Hence..the constant running around. Still..all was well. No meds needed. Keep in touch if anything else comes up.

This continued..this learning at home..and constant illness for a couple of years. We dragged Austen to the activities of his brothers. Karate, Soccer...Austen would proudly cheer his brothers on..before falling asleep at the dojo or soccer fields. Why? Because he was SO TIRED and his head hurt. Austen always has a headache. 

Just before his 9th birthday a friend of mine pulled me aside. She was Austen's scout leader..and she trained paramedics in the paycheck world. Nicole, she said, something is not right. He is getting more and more confused. He is wandering off and looking geuninely shocked at us. Sometimes..I think he doesn't know who we are. It's almost like..I don't know..a Hodgkinslike look or something. What are the doctors saying?

She is right. I know she is right. But the doctors have ruled out their major concerns..and keep trying to help him breathe. They don't know. I respond.

On his 9th birthday, Austen has a small party. Among the gifts received..a cool video-game. The boys are only allowed to engage in 4 hours of electronics a week. Austen is determined he will use all his 4 hours on THIS GAME...and he does.

The next morning, as I'm lying in bed. I hear tip-toeing in the next room. It is Austen.

That little sneak. I think to myself. He thinks I won't hear him playing. (His 4 hours are up for the week). I stay quiet to see if he is actually going to play the game. Yup..I hear the sound of the game..I hear race-cars...and the volume is quickly turned down..and I hear banging? Austen..AUSTEN.

He appears to be ignoring me..and I am stunned at how shameless he is. I walk into the living room to scold him..and there he is. Curled on the left side in a fetal in hand...body banging. Austen is having a grand-mal seizure. I time him. (I learned this with my sister years ago). At 45 seconds  he stops. I carry him to the couch and wake up his brother Cody.

Come on. I tell Cody.We have to take your brother to the hospital. 

Cody rides in the back. He nurses Austen's head in his lap. Austen has no idea what is happening. We drive for an hour to the nearest emergency room.  Cody keeps giving me an update. Mom..he's still breathing. Mom..he twitched. Mom..he's still breathing. 

As we pull into the parking lot. Austen opens his eyes. Oh. he says.

Austen looks around..and looks at Cody. What are we doing here?!

You had a seizure. I respond. We're here for you. Come on we need to get you checked out.

Austen grins, he shrugs and skips into the E.R.

Once I convince the triage nurse that Austen REALLY DID HAVE A SEIZURE...they agree to run an EEG ..mostly to humor mom.

..and then? He seizes again. Then again. EEG records abnormal activity not just when he is obviously seizing..but even while he is just telling jokes to the nurses.

We are now welcomed into our new home away from home, at Methodist Children's Hospital and the Texas Neurological Institute. Austen meets his new best friend. The neurologist who continues to work with him today.

Over the next couple of years Austen's seizures get worse. We discover he has been having drop seziures, petit mals and nocturnal seizures for a while. Hence..the purple lips, day-dreaming and constant fatigue.

Austen begins the medication maze. We start with depakote. As the depakote dosages increase and the years pass, Austen becomes less focused in his thinking..he starts to have memory problems, his amonia levels get too high. It is time to switch to lamactal.. Austen spends 3 months being withdrawn from depakote and increasing lamactal. Then the lamactal rash starts. Another 3 months and daily visits to the lower, then slowly increase lamactal again..  Lamactal doses continue to be increased year after year. At his worst Austen is averaging 6 seizures a day. He begins hyperventilating and develops leg tremors.

Yet he remains optimistic. He knows he is better off than some of his friends at the T.N.I building...and even though he can no longer play any video games, go to arcades, movies that flash,etc...he feels really sorry for Joe. When I ask him why he says..Mom..he can't wear headphones! Austen-land. All is well.

Austen's headaches continue.

This picture was taken during one of Austen's harder years. Here he had been home for almost a month due to uncontrolled seizures. Cody shows him how to play guitar.

We make the best of it. Big B says obnoxious things. For day when Austen's left leg kept trembling Big B..looked at Austen and said.Hmm..I think you like a girl. Shake your leg if you like a girl.
Austen would grin's not funny. Stop. And then he would laugh.

We learn that Austen's triggers are flashing lights,needles (and this is a kid that needs LOTS of blood work), messed up sleep cycles and math.

It's a sequencing we cook and play games in place of any formal math work.

Many of Austen's asthma meds disrupt his sleep patterns. Our family physician and neurologist work closely to come up with a reasonable medication cocktail to enable Austen to function with the best life-style options possible. As his sleep becomes manageable..and his nocturnal seizures decrease, Austen finds the energy he never had.

 Austen discovers gymnastics and roller hockey.

We are upfront with the gymnastics instructor. Not a problem, says the awesome gymnastics coach. He's most likely to have a seizure after he works out. We have mats on the floors. He'll be fine. The neurologist agrees...and encourages us to help Austen develop his risk-taking abilities...and so we do.

We realize Austen likes Roller Hockey because he can wear a helmet and blend in with everyone else. He becomes an active skater at the Boys and Girls Club. He rides bikes. He swims...and he has friends. We add karate to his list of activities.

Austen's friends are crucial. I have never seen so many supportive kids in my life.  Birthday parties are planned in places Austen can attend. ( roller-skating and pizza places with flashing lights). Questions are asked to know how to help if and when. Austen's friends are protective of him.

..and then there are the brothers.

They are supportive, they are protective, they are obnoxious. I walk into the living room one day when Cody and Brian are trying to teach Austen what he looks like when he is having a grand-mal. The boys think this is great fun..and they could scare mom! I start to protest..but I realize, they are supporting Austen in their own, twisted, brother way. So I leave it alone.

In this picture Brian is putting sunscreen on Austen. During this vacation Austen was fighting headaches and a medication rash the entire trip..but he was determined to have a good time...and he did!

Just before Austen's 11th birthday the neurologist calls me into his office. He would like us to consider surgery. Austen is on the same dosage of depakote needed for a grown man. The neurologist is concerned about liver damage...and if Austen is going to have surgery it needs to be either  now, or after puberty.

We begin a series of tests.

More psychological, more EEG's, sleep apnea, MRI's, educational (to see what areas of his brain are affected). We discover Austen is dyslexcic, dyscalculic, and dysgraphic in addition to having memory loss. We contemplate putting him in school. The specialists advise us to keep him home. We are informed by the school district he would be a home-bound student if he were registered. After all (all medical and educational professionals agree) Austen shouldn't work on more than 15 minutes of formal academics at a time. It is too hard on his body. More testing..and...

It is decided that Austen is not emotionally ready for the surgery.

We have a no brain surgery for now ice-cream celebration.

In time, Austen gets better at managing his own lifestyle. We plug along with minimal book work. His short-term memory is shot. We think this is because of meds..but we are not sure. We make sure to show him pictures of people before any function so he can remember who they are. We tell and retell family stories over and over.  We continue to read to Austen. We visit lots of museums and see lots of plays. Austen continues with karate, gymnastics and roller hockey...and then he gets pneumonia again.

When Austen is 12- almost 13 -our family physician refers him, again , to a pulmonologist. Austen is diagnosed with chronic pulmonary disorder and his meds are changed again. And you know what? They start to help...and as Austen's breathing becomes more regulated, the frequency of his seizures seems to decrease.

The headaches? They continue.

Austen joins Civil Air Patrol when he is 14. He flies planes, he becomes an element leader. AND  he is really good! I love to watch him drilling others.

There are certain things people do that- when they have a gift..or simply really enjoy doing-makes them. beautiful to watch. I love to watch my son Brian do katas and complicated math problems. I love to watch Cody play soccer and work out computer programs. And I love to watch Austen when he is choreographing a drill..or working with a drill team. He is beautiful.

Just before Austen's 15th birthday, his neurologist decides to take him off of his meds! We are stunned.

I know, he says. It makes no physiological sense. Let's just say, serendipity has struck again.

He pats me on the shoulder and gives me a wink. This is the way to decrease his meds. Call me if there is a problem. Otherwise? Austen..I hope to never see you again.

Here is Austen lighting a camp-fire for brother Brian's 20th birthday camp-out.

I would like to say that was the end of the story.

It is not.

Austen returned to the ER last Spring with a migraine that led to an altered mental state. This led to another round of testing with neurologists and cardiologists. But Austen is still off  of meds...and for the most part his memory seems to have returned.

It has now been determined that Austen has Bickerstaff Encephalitis. Essentially, his brain stem swells as a reaction to pulmonary stuff (originally). One of the times his brain was swelling, he received lesions on his left-frontal lobe. Causing permanent scarring -hence epilepsy. The brain swelling occurs off and on. This is Bickerstaff. We now know that this swelling is triggered by numerous food additives.

Today Austen is 16.

He sits in my living room reading Peter Pan as I type. He still works as Junior Staff at the Boys and Girls Club.

He quit Civil Air Patrol a year ago.

Austen realized he would never be able to be in the air-force and decided to turn his attention another direction. He spent a year directing all his attention to Odyssey of the Mind..and now he is searching, yet again. My son will not be an army doctor, an airforce search and rescue guy..or Drill Sergeant.  But Austen is amazingly social, bright and resilient. He contemplates opening a cafe, being a museum curator..or maybe..maybe..he will be president...

Austen misses the structure, the leadership training, the camaraderie and the challenges of the Civil Air Patrol environment, yet he seeks to grow. Austen seeks to soar beyond his limitations..and accept the ones he cannot change.

I do not know what Austen's future will hold. Will he stay relatively healthy? Will he get sick again?

I do know that Austen is a strong-spirit. I am lucky to be his mom.

So..the question, for now remains. Will Austen keep his dreads?


Jenny Pink said...

beautiful post, Nicole. I salute you, Austen, his brothers.

Ami said...

What an amazing story.
I learned a lot from reading it, and wish him luck in whatever he decides to pursue. I have a feeling he's gonna do great.


Mark said...

Do not tell anyone, your Post made me tear up. I have my own struggles with my oldest, John(10). We are still trying to figure him out. And I still have no idea what the future holds for one of my twins, Joshua.
I can tell, for sure, that you poured all that you had into this Post. It is obvious how much you love your son, no doubt there.
Now, this is between you and me, your readers and anyone else who has access to the internet. I keep myself very healthy so that I can stay alive long enough to make sure that my children are well cared for. There is part of me that thinks that I can die when I know that all of my children are okay. I worry about if they will make it in the world. My son, Jacob, seems to have it all together. And because you shared so much, I will share with you some information. Believe me, you are the first. My daughter Claire has Cerebral Palsy. Don't mention it yet on my Blog. It's very minor and no, you can't tell it from any of her photos. She is physically behind at least two years. It doesn't stop her though. She is quite determined and you can expect big things from her. As you see her grow, you will be amazed at her accomplishments. Because she is beautiful, she has done some modeling. With her brains and my backing, I imagine her not simply modeling but running a modeling agency. She wants to be a designer.
You may want to think about your son modeling. I know that it sounds very shallow but it's a job and it could give him the security that he'll need in life.
I know, I'm rambling. I often do that. It's only because your story has moved me.
You, my friend, and like Carol, are beautiful people who have given your lives to your children. You will be well rewarded.
Your Friend, m.

grillledcheesechic said...

Thanks for the feedback. (Both public and private). I had forgotten to state that November was Epilepsy Awareness Month..hence..the post.

I have to say, I have been humbled by many of the messages I have received. Many of you are giving your all to meet the needs of your children.

Kudos..Keep it up!

Anonymous said...

How'd you made your dreadlocks, at the upper picture?

grillledcheesechic said...

Ahh the dreads. That was a whole 'nother that never got written. We found a place that specialized in dreads for asians and caucasians. It cost entirely too much money..but the boy has baby fine hair, so we paid to have it done. He went in for a what types of dreads and how to care for apt., then 3 weeks later for the actual dreads. Every 6 months he went in for "dread maintenance".Crazy..I tell you. Pure craziness.