Vaccine induced epilepsy on the cover of Parade?

[Guest guest]

http://www.parade.com/health/2009/02/susan-axelrod-CURE-epilepsy.html

 

When her daughter was diagnosed with uncontrollable epilepsy, Axelrod

knew:

I Must Save My Child

By Fay Greene

Publication Date: 02/15/2009

 

Axelrod and daughter , 27 (photo by Lamber for PARADE)

 

For more on the Axelrods and CURE, tune in to NBC's TODAY show on Monday,

February 16.

When Axelrod tells the story of her daughter, she begins like most parents

of children with epilepsy: The baby was adorable, healthy, perfect.

arrived in June 1981, a treasured first-born. Landau had married

Axelrod in 1979, and they lived in Chicago, where pursued an MBA at the

University of Chicago and worked as a political reporter for the Chicago

Tribune. (He later would become chief strategist for Barack Obama's Presidential

campaign and now is a senior White House adviser.) They were busy and happy.

attended classes while her mother babysat. Then, when was 7 months

old, their lives changed overnight.

" She had a cold, " tells me as we huddle in the warmth of a coffee shop in

Washington, D.C., on a day of sleet and rain. is 55, fine-boned, lovely,

and fit. She has light-blue eyes, a runner's tan, and a casual fall of silver

and ash-blond hair. When her voice trembles or tears threaten, she lifts her

chin and pushes on.

Heroic Parents

I Must Save My Child After her daughter was diagnosed with epilepsy,

Axelrod took on the cause.

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Shattering the Myth of Epilepsy

Get the facts about epilepsy » " The baby was so congested, it was impossible

for her to sleep. Our pediatrician said to give her one-quarter of an adult dose

of a cold medication, and it knocked her out immediately. I didn't hear from

the rest of the night.  In the morning, I found her gray and limp in her

crib. I thought she was dead.

" In shock, I picked her up, and she went into a seizure--arms extended, eyes

rolling back in her head. I realized she'd most likely been having seizures all

night long. I phoned my mother and cried, 'This is normal, right? Babies do

this?' She said, 'No, they don't.' "

The Axelrods raced to the hospital. They stayed for a month, entering a

parallel universe of sleeplessness and despair under fluorescent lights.. No

medicine relieved the baby. She interacted with her parents one moment,

bright-eyed and friendly, only to be grabbed away from them the next, shaken by

inner storms, starting and stiffening, hands clenched and eyes rolling. Unable

to stop 's seizures, doctors sent the family home.

Learn more: Get the facts about epilepsy

The Axelrods didn't know anything about epilepsy. They didn't know that seizures

were the body's manifestation of abnormal electrical activity in the brain or

that the excessive neuronal activity could cause brain damage. They didn't know

that two-thirds of those diagnosed with epilepsy had seizures defined as

" idiopathic, " of unexplained origin, as would be the case with . They

didn't know that a person could, on rare occasions, die from a seizure. They

didn't know that, for about half of sufferers, no drugs could halt the seizures

or that, if they did, the side effects were often brutal. This mysterious

disorder attacked 50 million people worldwide yet attracted little public

attention or research funding. No one spoke to the Axelrods of the remotest

chance of a cure.

At home, life shakily returned to a new normal, interrupted by 's

convulsions and hospitalizations. Exhausted, fought on toward her MBA;

became a political consultant. Money was tight and medical bills stacked

up, but the Axelrods had hope. Wouldn't the doctors find the right drugs or

procedures? " We thought maybe it was a passing thing, " says. " We didn't

realize that this would define her whole life, that she would have thousands of

these afterward, that they would eat away at her brain. "

" I had a class one night, I was late, there was an important test, "

recalls. " I'd been sitting by at the hospital. When she fell asleep, I

left to run to class. I got as far as the double doors into the parking lot when

it hit me: 'What are you doing?'� " She returned to her baby's bedside. From

then on, though she would continue to build her family (the Axelrods also have

two sons) and support her husband's career, 's chief role in life would be

to keep alive and functioning.

The little girl was at risk of falling, of drowning in the bathtub, of dying of

a seizure. Despite dozens of drug trials, special diets, and experimental

therapies, suffered as many as 25 seizures a day. In between each, she

would cry, " Mommy, make it stop! "

While some of 's cognitive skills were nearly on target, she lagged in

abstract thinking and interpersonal skills. Her childhood was nearly friendless.

The drugs took made her by turns hyperactive, listless, irritable, dazed,

even physically aggressive. " We hardly knew who she was, " says. When she

acted out in public, the family felt the judgment of onlookers. " Sometimes, "

says, " I wished I could put a sign on her back that said: 'Epilepsy.

Heavily Medicated.'� "

At 17, underwent what her mother describes as " a horrific surgical

procedure. " Holes were drilled in her skull, electrodes implanted, and seizures

provoked in an attempt to isolate their location in the brain. It was a failure.

" We brought home a 17-year-old girl who had been shaved and scalped, drilled,

put on steroids, and given two black eyes, " says quietly.. " We put her

through hell without result. I wept for 24 hours. "

The failure of surgery proved another turning point for . " Finally, I

thought, 'Well, I can cry forever, or I can try to make a change.' "

began to meet other parents living through similar hells. They agreed that

no federal agency or private foundation was acting with the sense of urgency

they felt, leaving 3 million American families to suffer in near-silence. In

1998, and a few other mothers founded a nonprofit organization to increase

public awareness of the realities of epilepsy and to raise money for research.

They named it after the one thing no one offered them: CURE--Citizens United for

Research in Epilepsy.

" Epilepsy is not benign and far too often is not treatable, " says. " We

wanted the public to be aware of the death and destruction. We wanted the

brightest minds to engage with the search for a cure. "

Then-First Lady Hillary Clinton signed on to help; so did other politicians and

celebrities. Later, veterans back from Iraq with seizures caused by traumatic

brain injuries demanded answers, too. In its first decade, CURE raised $9

million, funded about 75 research projects, and inspired a change in the

scientific dialogue about epilepsy.

" CURE evolved from a small group of concerned parents into a major force in our

research and clinical communities, " says Dr. Frances E. Jensen, a professor of

neurology at Harvard Medical School. " It becomes more and more evident that it

won't be just the doctors, researchers, and scientists pushing the field

forward. There's an active role for parents and patients. They tell us when the

drugs aren't working. "

The future holds promise for unlocking the mysteries of what some experts now

call Epilepsy Spectrum Disorder. " Basic neuroscience, electrophysiological

studies, gene studies, and new brain-imaging technologies are generating a huge

body of knowledge, " Dr. Jensen says.

Axelrod, now 27, is cute and petite, with short black hair and her

mother's pale eyes. She speaks slowly, with evident impairment but a strong

Chicago accent. " Things would be better for me if I wouldn't have seizures, " she

says. " They make me have problems with reading and math. They make me hard with

everything. "

By 2000, the savagery and relentlessness of 's seizures seemed

unstoppable. " I thought we were about to lose her, " says. " Her doctor

said, 'I don't know what else we can do.'� " Then, through CURE, learned

of a new anti-convulsant drug called Keppra and obtained a sample. " The first

day we started on the medication, " says, " her seizures subsided.

It's been almost nine years, and she hasn't had a seizure since.. This drug

won't work for everyone, but it has been a magic bullet for . She is

blooming. "

and see their daughter regaining some lost ground: social intuition,

emotional responses, humor. " It's like little areas of her brain are waking up, "

says. " She never has a harsh word for anyone, though she did think the

Presidential campaign went on a little too long. The Thanksgiving before last,

she asked , 'When is this running-for-President thing going to be

finished?' "

CURE is run by parents. has worked for more than a decade without pay,

pushing back at the monster robbing of a normal life. " Nothing can match

the anguish of the mom of a chronically ill child, " says, " but

turned that anguish into action. She's devoted her life to saving other kids and

families from the pain and our family have known. What she's done is

amazing. "

" Complete freedom from seizures --without side effects--is what we want, "

says. " It's too late for us, so we committed ourselves to the hope that we can

protect future generations from having their lives defined and devastated by

this disorder. "

________________________________________________________________________________\

____________

Faces of Epilepsy

Seizure disorders can stigmatize their sufferers, but awareness is leading to

new understanding.

New York Jet Alan Faneca speaks out frequently about his battle with epilepsy.

Olympic sprinter Florence Griffith Joyner died from a seizure in 1998.

Rock legend Neil Young suffered his first epileptic episode at age 20.

U.S. Chief Justice Jr. has had two reported seizures since 1993.

To Learn More

Visit CURE online at cureepilepsy.org or write: CURE, 730 N. lin St., Suite

404, Chicago, Ill. 60654

Plus: For more on the Axelrods and CURE, tune in to the TODAY show Monday,

February 16.

Love, Gabby. :0)

http://stemcellforautism.blogspot.com/

 

" I know of nobody who is purely Autistic or purely neurotypical. Even God had

some Autistic moments, which is why the planets all spin. " ~ Jerry Newport