SUDEP is Sudden unexpected death in epilepsy.

This is a hard topic for some but, if we are aware of this we will be able to take all and any safety precautions to help prevent this form happening to others.


What is SUDEP


A Doctors Struggle


What the patient and doctor should know

This topic was not started to scare anyone I started this because we are losing to many loved ones to SUDEP and the more we know about this we can practice saftey precautions to prevent this.

Over 2.7 million Americans have epilepsy and of those 2.7 we lose 10% of them to SUDEP.

It has been three years since Jennifer and Dan Wader Sr. held their 3-year-old son Danny. Three years, since that fateful Christmas night when Danny went to sleep and never awoke. According to the medical examiner Danny’s death was caused by acute respiratory failure following a seizure. The doctors suspect Danny had a seizure that caused him to roll face-down onto his pillow, which led to suffocation.
The day he passed away, Jennifer said she "awoke at 5 a.m., the time Danny was usually up and jumping on their bed.” But there was no Danny. In a panic, Jennifer ran into Danny’s room and found him lying face-down on his pillow, motionless. Even now, Jennifer is still plagued with the “what-ifs”, “I had trouble sleeping that night and had been in the living room where I could see Danny. For some reason I went back to my bedroom to sleep. I can’t help but wonder if I hadn’t gone back to my bedroom if I might have been able to save him.”


Despite their grief the Waders have created a way to honor Danny’s memory as well as to help educate others about epilepsy by founding a non-profit organization called Rocking for Epilepsy.

Rocking for Epilepsy

“We named it ‘Rocking for Epilepsy’ because Danny was rocked to sleep from the day he was born until the day he died”, said Jennifer. Rocking for Epilepsy is a non-profit foundation created to raise funds and epilepsy awareness. “The mission of Rocking for Epilepsy is to raise public awareness about epilepsy as well as to erase the ignorance and stigmas associated with epilepsy," said Jennifer. In one particular instance, Jennifer recalls the discrimination she and Danny endured while waiting to get Danny’s picture taken at a local photography studio. It was during the waiting period that Danny had a tonic-clonic seizure triggered by the flashing lights of the cameras. When Jennifer went to reschedule she was given the run-around by the staff and refused a second appointment. “People with epilepsy are just like you and me. It’s not contagious, but that’s how people act sometimes,” Jennifer said.

Since its inception in 2002, Rocking for Epilepsy has raised over $10,000 through such events as the Quad-City Epilepsy Walk-A-Thon. Almost all of the proceeds have gone directly to the Epilepsy Foundation to promote epilepsy awareness and to directly support the needs of children with epilepsy.

BoogaBear: The Epilepsy Awareness Traveling Bear

Boogabear is known as The Epilepsy Awareness Traveling Bear and was created by Dan Wader in an effort to bring comfort to children with epilepsy as well as serve as an epilepsy awareness tool. Boogabear, The Epilepsy Awareness Traveling Bear, is named after Danny Wader Jr. whose parents nicknamed “Boogabear” as an infant.

Boogabear started his travels after the death of Danny, on July 1, 2003 and has visited over 22 states. He travels around the USA visiting with children and adults that have epilepsy. He spends 7-10 days with the host and is sent via US Priority Mail, with a return shipping label included in his travel box. Also included in his travel box are a journal, a photo album and meds. Hosts are asked to keep a daily log of activities and time spent with Boogabear. The host can also put pictures in the photo album, which is kept with Boogabear as well. “I am amazed at how well children and adults alike have taken to the bear. I think Jennifer and Dan have found a great way to educate the public about epilepsy because everyone loves the bear and wants to hear his story,” said Michele Freitag, R.N.” Freitag believes that the biggest challenge Rocking for Epilepsy faces is getting sponsors to support Boogabear, but is confident that in time more support will be generated.

Danny’s story

At 9 months of age Danny had his first seizure. It was severe enough to put him into acute respiratory failure. Thanks to the paramedic team and the hospital staff in Davenport Iowa, he survived. However, Danny’s struggle with epilepsy was far from over. In the next two years following his first seizure Danny had over 160 tonic-clonic seizures lasting anywhere from 3 minutes to 1 hour. The Waders went through nine neurologists and went as far as Minneapolis to consult a specialist in child epileptology.

They tried every medication, but nothing seemed to control his seizures. They even explored the option of surgery, but it was decided Danny was not a surgery candidate because of his age. “I think one of the hardest things for Danny and his family was that they never knew when he was going to have a mild seizure or a life threatening one,” said Freitag.

In fact, Danny spent so much time going to the hospital by ambulance that Jennifer and Dan asked several EMT’s to be pallbearers at Danny’s funeral. “The EMT’s came to our home more than two dozen times in two years. “He would have died sooner if it weren’t for those EMT’s, said Jennifer.

How the Waders are coping

The Waders are still coping with the loss of their son, but say starting Rocking For Epilepsy has made all the difference in helping them heal. Jennifer also attributes her ability to cope with the loss of Danny to her Uncle "T", “It is like Danny passed away and Uncle "T" helped fill part of the void in my heart. He helped me understand and helped take away some of the hurt and pain.” Dan Wader Sr. has found comfort in other ways, “With the birth of a baby boy every father looks forward to the day he can say that’s my boy. With Danny passing many would say that opportunity was taken away, but that’s just not so. Each time BoogaBear comes home and I read his journal I am touched in a way that is indescribable. Danny touched many people in his own special way and I think that's what BoogaBear does for others. When I look at BoogaBear and see how he has touched the lives of those he has visited I can say, ‘That’s my boy!’”



Was also featured on epilepsy.com

http://www.epilepsy.com/stories/ps_1093455944.html

This is posted with permission form the author.



Danny Jr.



A very young boy died in his sleep

Causing his parents and friends to weep

They looked to the heavens for answers above

The only reply, a single white dove



Higher and higher, the dove it did soar

Into the heavens to be seen no more

The message came clear to all on the land

This special young boy sits at God's right hand



He smiles down at Mommy and Daddy below

At the efforts they make to help others grow

He wishes to tell them, he suffers no more

And inspires this poem to open the door



The sign that God sent, a dove pure white

To tell them stop weeping, give up their fright

Danny rests with the angels and God up above

His soul borne to Heaven, on the wings of a dove



Uncle "T"

(Inspired by Danny Jr)

October 15, 2002

©2002 Cyril A. Kirkland

Posted with permission

Angel Wings

In memory of Daniel E. Wader Jr., the lilttle boy who loved life so much now lives on in our hearts forever.



I walk the streets of heaven

While Jesus holds my hand

We walk amongst crowds of children

In this perfect land

Safe from pain and grief

Death already beaten

I look down upon you

From the skies of heaven

I didn't chose to live or die

I hope you'll one day see

My death was part

Of God's big plan

For he chose me to be

An angel up in heaven

That's where I am today

god wanted me home

So he sent me up his way

Please forgive my death so young

I know it doesn't seem fair

The Epilepsy took my life

But, mommy don't despair

I didn't leave you behind

I know that's hard to see

Look deep down in your hearts

That's where I'll always be

When you feel like crying

Shed no more tears for me

Cause now I have my angel wings

And Jesus here with me

-Nicole Henry

Below is a link to Brittany's Site a very special little girl we lost to epilepsy.

The hard thing with this one is Brit had siblings to explain this to

http://www.geocities.com/brittanysmythe/



Sending hugs to Sabrina and family

Following posted with permisson from next of kin


This story is about Raymond P. Hasher III, who passed away from epilepsy at the age of 23 years old.
It all began back in 1995 when I was pregnant with our daughter, Colleen Rae. How excited Ray was but always disappointed when I got my ultrasounds done because, for some reason, Ray would black out because of the lights in the room so he would never go in. We never thought much of it. From 1995 to 2000, Ray always complained of certain lights and blacking out. "Maybe you need glasses?”, I used to think. Who ever would have thought that Ray was showing signs of epilepsy?

In January of 2000, Ray woke up one morning and had a grand mal seizure. This happens when the whole brain is suddenly swamped with electrical energy. The seizure often starts with a cry caused by air being suddenly forced out of the lungs. The person falls to the ground, unconscious. The body stiffens and then begins to jerk. The tongue may be bitten. A frothy saliva may appear around the mouth.

Breathing may become very shallow and even stop for a few moments causing the skin to turn a bluish color. The seizure should end naturally after a minute or two. When consciousness returns the person who had the seizure may feel confused and sleepy. Ray was in the hospital for three days after his first grand mal seizure. All tests came back normal. "We don't know why Ray is having seizures", said one neurologist from the hospital.

From January of 2000 to January of 2002, after hundreds of doctor appointments, ambulance rides, emergency room visits, hospital stays, changing medications, Ray's seizures got progressively worse even with medications. He would tend to have his seizures every other day and always in the morning upon waking. Some days Ray would have two or three seizures in a row. Ray’s seizures would first start out with a myoclonic seizure, which consist of sudden, brief muscle contractions that occur singly or in cluster and usually involve the upper extremities without impairing consciousness. Ray usually would spill or drop things during a myoclonic seizure. Then his myoclonic seizure would turn into a grand mal seizure.

Through these difficult years with learning to deal with his epilepsy, Ray and I felt as if the doctors' would not treat Ray because he had no health insurance and was told by his doctors’ that he should apply for Medicaid, which is a jointly-funded Federal-State health insurance program for the needy, low-income, aged, blind and/or disabled. After getting numerous doctors' notes stating that Ray could not work because of an uncontrollable seizure disorder, again and again, Ray was turned down for Medicaid. It finally got to the point that Ray would have a hard time getting a doctor’s appointment or getting his prescriptions refilled because he did not have the money and Medicaid would not approve him for coverage. And at this time Ray’s seizures were getting more uncontrollable. "I'd rather have cancer than to go through this", Ray had once said.

A couple days before Ray's death he ran out of Diazepam, which was one of three different medications that Ray would take for his seizures. Diazepam is a widely used drug for acute management of all types of seizures. Ray always used to say "I don't know what I'd do without my Diazepam. It's the only thing that helps calm my nerves." Nerves were one thing that would trigger Ray’s seizures. Ray called his doctor and tried to make a doctor's appointment and to get his Diazepam refilled. His doctor refused because he had a balance with the doctor's office. After that, we found Ray another doctor but the new doctor couldn't see Ray for another week. I then had to take Ray up to a local hospital to get his Diazepam refilled. The hospital told him that, by law, they can only give him 10 pills of Diazepam which would only last him five days because he would take one pill in the morning and one pill at night. "What about the other two days?", Ray and I both thought. "You'll be okay Ray. It's only two days", I told him.

The first day that Ray was without the Diazepam, he had a severe grand mal seizure when nobody was around that turned into status epilepticus. Status epilepticus is when a seizure lasts more than thirty minutes or it could be the occurrence of serial seizures between which there is no return to the same level of consciousness as occurred prior to the seizure. Ray ended up suffocating in his pillow during this. Ray was only twenty three years old.



Special Hugs to Bridgette and Colleen

Rays Poem

It was Thursday, January 31, 2002,
I was sitting in work not having a clue.
Wonder where Ray is, why didn’t he call,
Is he having a seizure and hurt from a fall?
I picked up the phone and dialed his number,
He said he was having convulsions in clusters.

“Don’t call the ambulance, I’ll be alright,”
“I just didn’t get much sleep lastnight.”
“I just took my medicine so I’ll be okay,”
“It’s just another ordinary day.”

After an hour I got kind of worried,
I picked up the phone and called Ray in a hurry.
“Bridgette, I need you to come right away,”
“I am having non-stop seizures today.”

“You’ll be okay Ray, I will call your mom,”
“Don’t get upset, please just stay calm.”

An hour later my phone started to ring,
The EMT’s said it’s a very bad thing.
They could not get Ray to start breathing again,
“We think that he suffocated in his own bed.”

My precious Ray, why did you leave me now?
I have to tell Colleen but I just don’t know how.
“You’re daddy’s in heaven my darling Colleen,”
“Daddy was the strongest man that I ever did see.”

He suffered from seizures for nearly two years,
He told God to please take away all his fears.
Although I am gone don’t cry, don’t you see?
No more seizures I’ll have, no more epilepsy.


Written by Rays soulmate and the mom of his daughter.

A Story of a 22 year old taking a bath

Lyndon Institute dies after seizure in cafeteria


January 30, 2006

LYNDON, Vt. --Officials say a 16-year-old sophomore at Lyndon Institute died Monday after suffering a seizure in the school cafeteria
Officials said the girl, identified as Jamie Beyers, collapsed on the floor and neither school staff nor paramedics could revive her.

She was pronounced dead later at the Northeastern Vermont Regional Hospital in St. Johnsbury.

Full Story Click Here