Epilepsy Awareness #1

[Elyssa414]

I just saw a great segment that 60 minutes did on Epilepsy yesterday! It hit SO close to home, I'm in tears. I can't get it on my journal, but here's the link:

http://www.cbsnews.com/video/watch/?id=5419899n&tag=api

Kicking off Epilepsy Awareness month... (November), the theme this year is "Talk about it" So I'm going to share the beginning of Elijah's story here, for those of you that don't know it... This is the story of how epilepsy drastically changed our lives over 6 years ago:

My oldest son, Elijah, came to live with me at 6mos old. He quickly became the light of my life!!

For the first nine months that I was a mother, Elijah was bright, smart, learning and growing right with his peers! He was HAPPY. He smiled and laughed, and woke up cooing and giggling every morning! I'd go into his bedroom and find him clapping his hands with delight that there was another day coming! He was super healthy! A BIG boy... Born at 9lb 14oz, he weighed 30lbs on his first birthday. He also was walking and starting to say some simple words and imitating talking sounds, and listening to "No" and responding to directions and his name... Life was perfect. (too bad I didn't know it then, or I would have appreciated it more!)

When his seizures started at 15mos, it was just this slight arm twitch... then both arms, then both arms and a head drop, then both arms would fly out to the side and he would bend sharply at the waist, whacking his forehead on the floor 20-30 times in a row! It was terrifying how one day we were thinking that it was nothing, his arms were just twitching out to catch his balance... And a month later we were rushing to the doctor wondering what could possibly be wrong with him!! We honestly never thought "seizure"... I thought that seizures were things that made people fall down, shake violently and foam at the mouth... Nothing like what Elijah was doing.

I actually honestly expected out pediatrician to look at my video of his episodes and explain how normal it is for the infant startle reflex to come back for a short time. I expected to be given that condescending smile of the medical professional world, and be treated like the paranoid new mother that I felt like. I expected to laugh, and feel silly, and apologize for wasting our doctors time with something so simple. I KNEW that Elijah was fine. He always had been. He always would be.

But the doctor never said that it was normal. He didn't smile knowingly when I showed him the video. He didn't tell us that everything would be okay. He said that we should see a neurologist, and asked if we would wait while he called around. We were nervous, and I felt even more silly, now that we were going to waist a neurologist's time with our perfectly healthy child.

The doctor came back in the room and said he had gotten us an appointment with a neurologist at 7:00 the next morning. He had agreed to see us before his scheduled appointments that day. We were amazed at how nice that was. We thought he must be a really caring doctor to do that. We still didn't think it meant anything horrible. I didn't know back then that there was normally a 6 month wait to see this particular doctor.

It was a few weeks later, the morning after Elijah's first EEG that it really started to hit. They had told us that we would be given the test results at our next appointment, 3 weeks after the EEG. We were told that it was probably benign myoclonic epilepsy. We were told it was easily treated, and Elijah would be fine...

When the phone rang the very next morning, and it was the neurologist himself telling me that he was wrong, it was not benign. It was not myoclonic... That's when this lead ball landed in my stomach.

Elijah had West Syndrome. Also called Infantile Spasms.

We were to come in to the hospital the next morning at the latest, to learn about the treatment. I was to quit my job as a nanny, because Elijah's immune system would be shut down, and I could not be around other kids.

Soon we would be standing in an office jabbing ourselves in the stomach with sterile saline needles to learn the technique to give Elijah his life saving injections of steroids and hormones... It was horribly inadequate practice, because the needles we used to practice were TINY. The saline thin and easy to inject.

Elijah's injections, which I would hate myself for giving him every day, were an incredably thick gel, that wouldn't even move in the vile until it was warmed up. The needles were HUGE. The shots had to go deep into the muscle, violently bruising his small thighs.

The medication made his hair thin and limp, instead of supple and curly. He gained 20lbs in less than a month and had stretch marks on his back and belly. His face became so swollen, that most mornings he couldn't open his eyes. It was like torture to touch him, because he was in SO MUCH PAIN... But he never wanted to be put down. SO with carefully placed hands, I would hold my 55lb, 18 month old child and walk circles around our apartment for hours and hours on end day in and day out, while he screamed in agony, and I sang in his ear. Every slight infection like a hang nail or diaper rash would so quickly ravage his poor immune-compromised body, that we would be rushing to the ER time and again. His blood pressure skyrocketed, until he was on 3 different adult BP medications just to keep it under control, and we had to go to the doctor 3 times a week to have it checked, (which was a welcome relief, because other than those trips to the Dr, I could not leave the house at all for a total of 6 months, during the two rounds of this treatment... because we couldn't risk him getting a cold or flu that he would be helpless to fight off)

The treatment worked for a short time after each treatment, but the seizures have been relentless. Elijah was never the same boy after that first treatment. He re-learned to walk and talk a little. He now runs and laughs on his good days.

His brain has been damaged from his seizures and from the treatments. And he will never have the chance to go back to that happy, healthy, smart child that we had so long ago.... Rarely now, I still find myself struck with the grief over the loss of that first, healthy Elijah. The loss of all that potential, and the "what could have been" without the seizures. I find myself on rare occasions, looking at my beautiful, strong, amazing son, and wondering who he would be if Epilepsy hadn't taken so much from him.

But we love this Elijah with ALL OF OUR HEARTS. I would take away his pain, and his fear and the uncertainty of it all. I would take away the hospital stays and drugs and treatments if I could, but I would not trade the Elijah we have now for anything in the world.

The diagnoses of "epilepsy" changed our lives dramatically. It started our world spinning on a totally different axis... Throughout the month of November I will continue to tell the rest of Elijah's story in greater detail than I have ever before. To spread awareness and understanding about my oldest son's condition. A condition that effects more people than Cerebral Palsy, Parkinson's and Multiple Sclerosis combined.

Epilepsy Facts:

• Epilepsy affects over 3 million Americans of all ages - more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.


• In two-thirds of patients diagnosed with epilepsy, the cause is unknown.


• Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.


• In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.


• The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs-both medical and societal.


• It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.


• The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is twenty-four times greater.


• Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, mental retardation, autism, Alzheimer's disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.


• There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy.


• Historically, epilepsy research has been under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.


• For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.

[ironkitten]

Oct. 26, 2009 at 2:30 PM

You are amazing!  I call you my hero, along with Elijah.  Prayers to everyone!

[Samanthaluv]

Oct. 26, 2009 at 2:59 PM

Thank you for sharing your story.   My prayers are with your family

[prinsesK]

Oct. 26, 2009 at 5:36 PM

what a heart wrenching story!  kudos to you for sharing!

[ms_mommy_sue]

Oct. 26, 2009 at 11:57 PM

this made me bawl for you all. Such promise of one type changed into a new  type of promise for you guys. YOu are one strong woman and your husband is a super strong man. Hugs to you both