Friday, October 31, 2014
YOLO COUNTY NEWS
99 CENTS

An unexpected death, and a dilemma

MarionFranckW

By
From page A11 | March 03, 2013 |

The husband of my friend and former student Allison Austin suddenly died one year ago in their home outside of Washington, D.C. He was the father of two boys aged four and six, and young himself, 42 years old.

I knew him only from Christmas card photos, a friendly-looking, dark-haired man, mildly overweight, clearly devoted to his wife and boys. The loss to his family was, of course, devastating.

His death certificate states that he died of a rare complication of epilepsy called SUDEP (Sudden Unexplained Death in Epilepsy) that is little known in America, even among patients at risk.

The cause is unknown. No cure is available. Nevertheless, a grassroots movement is forming among people who have lost love ones to this condition, including Allison who asked me to write about it.

It will take me two weeks and two columns to tell Jeff’s story. I hope you’ll stay with me for this.

————

About 3 million Americans have seizure disorders. Each year, a tiny percentage of these people die of SUDEP. Most of the victims are young, in their teens or early adulthood.

How do we save them?

Allison can’t tell her story without tears, and I couldn’t listen without tears but we talked anyway using Skype.

She asked me to do what I can to get the word out about SUDEP. If the acronym makes you think of SIDS, Sudden Infant Death Syndrome, the comparison is appropriate as you will see.

————

Jeff had his first seizure, a grand mal or tonic-clonic seizure, on Jan. 30, 2012. It came in his sleep after a fast and exhausting trip with his dad to Florida to watch the Daytona NASCAR race.

Thinking at first he was having a heart attack or stroke, Allison called 911 and got Jeff to the hospital, where they diagnosed a seizure but found nothing else wrong. He was discharged the same day with a paper listing the things he shouldn’t do: no swimming, no climbing ladders, no driving for six months.

The neurologist they visited the same day said that Jeff had a seizure disorder, not necessarily epilepsy, and that he had a 50-50 chance of never having a seizure again.

When Allison asked what to do if Jeff had another seizure, the doctor said, “You don’t have to call 911. You don’t have to go to the emergency room unless he falls and hits his head.”

The neurologist gave them a list of “don’ts” like the one from the hospital, and Jeff and Allison mostly discussed how he would get to work without driving.

A scientist by training, Allison was worried but not panicked by this new development in their lives. She and Jeff had been together nine years. They had a supportive family living close by. All was well.

————

One month later, on Feb. 26, at 5:30 a.m., Jeff had a second seizure. Although it was frightening, he did not fall and hurt himself so Allison didn’t call the paramedics. A couple of hours later he was well enough to come downstairs from the bedroom.

Jeff let his sons jump around on him a little but said he felt tired and nauseous. Allison telephoned her in-laws who offered to take the children so Jeff could rest. After the boys left, he went upstairs to sleep.

Allison checked in on him, spoke with him once, and texted a few friends saying ‘he’s had another seizure but he’s doing OK.” At 10 a.m. she took a shower.

When she got out of the shower, she went in to Jeff and found him face down in the bed, not breathing. She called 911 and commenced CPR. The paramedics arrived quickly and worked on Jeff for an hour and a half, but he never regained consciousness.

A young husband and father was gone.

————

If you try to imagine the guilt and misery you would feel about having taken that shower, about having left your husband alone, you’ll begin to understand how upset Allison is about not being warned about SUDEP.

If she had been warned, she would not have left him alone. Most deaths from SUDEP appear to occur when the patient is unattended, but doctors don’t know why.

How can doctors warn people about SUDEP without terrifying them? Are warnings the best course of action, considering that the condition is very rare? This information can create nightmares, especially given the incompleteness of current research.

Should doctors warn only those most likely to be affected, people in specific subgroups of epilepsy? Jeff did not belong to that population.

It takes a long time for a newly identified syndrome to be studied and to move through the medical literature to the doctor on the street. Physicians in Europe, Canada and Australia began publishing about SUDEP before Americans (about 15 years ago), but they still argue about patient disclosure.

This dilemma extends to other illnesses. It took many years to work out preventative behavior for SIDS and to inform the general public.

In addition, we patients vary in how information we want immediately after being diagnosed with a new disease.

A physician who knows you well is most likely to give you information at a rate and in a way that works for you. But how often, in this era of specialists and speedy appointments, does that happen?

Next week I’ll report on what Allison thinks we should do.

— Marion Franck lives in Davis with her family. Reach her at marionf2@gmail.com

Comments

comments

  • Recent Posts

  • Enter your email address to subscribe to this newspaper and receive notifications of new articles by email.

  • .

    News

     
    State superintendent makes campaign stop in Davis

    By Jeff Hudson | From Page: A1 | Gallery

     
    Indians celebrate Diwali with gala on Sunday

    By Special to The Enterprise | From Page: A3

    Rairdan dinged for late report

    By Jeff Hudson | From Page: A3

     
    Veterans will tailgate at ‘Salute to Heroes’ game

    By Enterprise staff | From Page: A3

    Wolk hailed for environmental votes

    By Enterprise staff | From Page: A3

     
    Yamada honored for leadership on aging issues

    By Enterprise staff | From Page: A3

    Embroidery group meets at mall

    By Enterprise staff | From Page: A3

     
    Bones for Life classes offered

    By Enterprise staff | From Page: A4

    Bet Haverim will hear Israel update

    By Special to The Enterprise | From Page: A4

     
    Local artisans featured at holiday craft fair

    By Enterprise staff | From Page: A4

    Got bikes? Donate ‘em!

    By Enterprise staff | From Page: A4

     
    Kids walk for friends at Birch Lane

    By Special to The Enterprise | From Page: A4

    Explorit: Creep out with some spooky science

    By Lisa Justice | From Page: A4

     
    Shambhala offers Tai Chi class

    By Special to The Enterprise | From Page: A4

    Enjoy wine, music and art at Sunday fundraiser for DHS choir

    By Anne Ternus-Bellamy | From Page: A9

     
    .

    Forum

    New-school cheating on the smartphone

    By Creators Syndicate | From Page: B5

     
    My choices on Tuesday

    By Letters to the Editor | From Page: A10

     
    Garamendi, Dodd get my votes

    By Letters to the Editor | From Page: A10

    Tom Meyer cartoon

    By Debbie Davis | From Page: A10

     
    High hopes for Sunder

    By Letters to the Editor | From Page: A10

    Public service is in her heart

    By Letters to the Editor | From Page: A10

     
    A calm, thoughtful voice

    By Letters to the Editor | From Page: A10

    Sunder is a perfect fit

    By Letters to the Editor | From Page: A10

     
    Best predictor is past behavior

    By Letters to the Editor | From Page: A10

    Vote for students, with Tuck

    By Letters to the Editor | From Page: A10

     
    .

    Sports

    DHS plays undefeated Pacers Friday night

    By Enterprise staff | From Page: B1

     
    Blue Devil girls net an easy win at Grant

    By Enterprise staff | From Page: B1 | Gallery

    Aggie offense A-OK; now what about defense?

    By Bruce Gallaudet | From Page: B1 | Gallery

     
    In Davis, rugby is as American as apple pie

    By Bruce Gallaudet | From Page: B1

     
     
    Niemi’s 43 saves aren’t enough in loss to Wild

    By The Associated Press | From Page: B8 | Gallery

    .

    Features

    .

    Arts

     
    Calling all artists for upcoming show

    By Enterprise staff | From Page: A11

    ‘Birdman': A dark comedy that soars

    By Derrick Bang | From Page: A11

     
    DHS Madrigals host singing workshop

    By Enterprise staff | From Page: A12

     
    Marcia Ball to play at The Palms

    By Enterprise staff | From Page: A12 | Gallery

     
    .

    Business

    Big, capable luxury defines Yukon

    By Ann M. Job | From Page: A5 | Gallery

     
    .

    Obituaries

    Joseph Francis Gray

    By Special to The Enterprise | From Page: A4

     
    .

    Comics

    Comics: Friday, October 31, 2014

    By Creator | From Page: B6

     
    .

    Real Estate Review

    Featured Listing

    By Special to The Enterprise | From Page: RER1

    Professional Services Directory

    By Special to The Enterprise | From Page: RER2

    Lyon Real Estate

    By Special to The Enterprise | From Page: RER3

    RE/Max Gold

    By Special to The Enterprise | From Page: RER4

    Kim Eichorn

    By Special to The Enterprise | From Page: RER5

    Susan von Geldern

    By Special to The Enterprise | From Page: RER6

    Team Traverso

    By Special to The Enterprise | From Page: RER6

    Yolo FCU

    By Special to The Enterprise | From Page: RER6

    Juan Ramirez

    By Special to The Enterprise | From Page: RER6

    Tracy Harris

    By Special to The Enterprise | From Page: RER7

    Susan von Geldern

    By Special to The Enterprise | From Page: RER7

    Wells Fargo Home Mortgage

    By Special to The Enterprise | From Page: RER8

    Julie Leonard

    By Special to The Enterprise | From Page: RER8

    Joe Kaplan

    By Special to The Enterprise | From Page: RER9

    Melrina A Maggiora

    By Special to The Enterprise | From Page: RER9

    Coldwell Banker

    By Special to The Enterprise | From Page: RER10

    Leslie Blevins

    By Special to The Enterprise | From Page: RER12

    Julie Partain

    By Special to The Enterprise | From Page: RER12

    Robin Garland

    By Special to The Enterprise | From Page: RER13

    Jamie Madison

    By Special to The Enterprise | From Page: RER13

    Diane Lardelli

    By Special to The Enterprise | From Page: RER13

    Karen Waggoner

    By Special to The Enterprise | From Page: RER14

    Jamie Madison & Associates

    By Special to The Enterprise | From Page: RER14

    Lisa Haass

    By Special to The Enterprise | From Page: RER14

    Ciana Wallace

    By Special to The Enterprise | From Page: RER15

    Travis Credit Union

    By Special to The Enterprise | From Page: RER16

    Malek Baroody

    By Special to The Enterprise | From Page: RER17

    Marcelo Campos

    By Special to The Enterprise | From Page: RER18

    F1rst Street Real Estate

    By Special to The Enterprise | From Page: RER20