Julie was 10 months old when she had a grandmal seizure. She was prescribed
Phenobarbital to control idiopathic epilepsy. We asked the doctor about side
effects and we were told drowsiness. That was much easier then watching my baby
seize. Two weeks on August 18, 1994, we learned about Stevens Johnson Syndrome.
Julie awoke one morning with her right eye swollen shut. By that evening her
left eye swelled also and the right one was now completely shut. My mother
thought the baby had an allergy. As the night went on she developed a high
fever. I rocked her all night. The next morning I took her to the doctor who
diagnosed her with a viral exanthem and later that day changed the diagnosis to
She continued to worsen as the day went on. She could no longer take a
bottle as her mouth was filled with blisters and she continued to run a high
fever. I worried that since she was not taking any liquid she would dehydrate.
I called the hospital and was told to wait another 6 hours and if she still did
not have a wet diaper by then to bring her in. When I took her to the emergency
room she was dehydrated. They started an IV and gave her the missed dose of
Phenobarbital from the night before. She received another dose that night and
another the next day. She had blisters from dime size to half dollar. Her face
was unrecognizable. She looked like she had been deep fried. Four days later
she was diagnosed with SJS, secondary to Phenobarbital. I remember how happy I
was at the time thinking, finally we know what is wrong. Now she can get
better. Then a doctor told me, "Jean this is not a good thing."
My sisters went to the medical library and got the only information they had
on SJS. No one should have to hunt for this information. It should be made
readily available to all patients and families who experience this nightmare.
We could only find one article. Julie was debrided every day in the burn unit
and wrapped in bandages. She was on morphine for the pain and had a feeding
tube for nutrition. I was given one lesson the day she was released from the
hospital on how to insert a N. G. Tube through her nose and into her stomach
just before we left the hospital.
Her lungs collapsed and she has a swallow disorder. She did not hear until
she was 18 months old. The blisters in her ears had ruptured and wept over her
eardrums. They had to be removed by an Ear nose and throat doctor. On her first
Birthday I was told my baby was going blind. I watched in horror as doctors
performed traumatic procedures on my daughter to save her sight. Glass rods
swept under her eyelids as I held her down. I wasn't supposed to let anything
bad happen to my child no less hold her down while someone hurt her. She was
terrified of everyone. Julie did lose all of her sight in her right eye and has
low vision in her left. She has dry eye syndrome, photophobia and has had 8 lid
entropian surgeries. She has attended preschool for blind children. We almost
lost her several times. One night my entire family came up to the hospital to
say good bye to her. Somehow Julie survived. It was a miracle, I thank God she
is still with us, She does not look the same, but will always be my beautiful
baby. I love her with all my heart.
The seizures came back full force and Julie was in a coma after 44 seizures
in one day the longest lasting 50 minutes. Thank God, movie producer Jim
Abrahams heard about Julie and with his help she was put on the Ketogenic Diet.
This is a high fat diet requiring everything she ate be measured to the nearest
gram. After 2 years, it paid off. She is DRUG & SEIZURE FREE! I only wish
the diet had been offered to us in the beginning.
We took Julie to the Boston Foundation for Sight when she was 4 years old.
She was fitted for the scleral contact lens. It was one of the best things we
ever did. Julie was seen by Dr. Perry Rosenthal and Dr. Janice Cotter at BFS.
Dr. Rosenthal developed these wonderful contact lenses that have proven to help
many SJS patients. It did help Julie. Her photophobia was reduced by 50%. She
is much more comfortable as it bathes her eyes all day long and relieves the
dry eye syndrome. She asks me to put her contacts in. One night after her
contacts were out she told me "Mommy my eyes hurt". Julie never
realized she was in pain until she got the scleral lens. I asked her if she
wanted to wear her contacts or her glasses. She said her contacts. I asked her
why and she told me because she can see with them and her eyes feel good. Pain
was a way of life to her. It is a miracle. I will never be able to thank Dr.
Rosenthal and Dr. Cotter enough. While we were there we met Joe Zienowicz. He
had SJS in 1995 and is legally BLIND. After receiving the scleral lens, Joe
gave us a ride from Boston to New Jersey where we met several other families
whose children suffered severe eye involvement from SJS. After seeing Julie and
Joe they, too, are getting the scleral lens. For more information about the
Boston Foundation for Sight please call (617) 735-8698, or visit their website
by clicking here: The
Boston Foundation for Sight website
We started the Stevens Johnson Syndrome Foundation - Julie Foundation for
Allergic Drug Reactions, a nonprofit organization to provide information that
we struggled so hard to find. Adverse Drug Reactions are the 4th leading cause
of death in the United States, yet less the 1% of these reactions are reported
to the FDA. We are also working on medical research into SJS/TEN.
I was told we would never hear of another person with SJS. We have reached
around the world with our SJS Support Group, and have sent out hundreds of
information packets with information that was not readily available to us when
Julie was diagnosed with SJS. The SJS Foundation now has a 3 fold brochure. No
one should have to search for information while their loved one is fighting to
survive SJS. SJS is not as RARE as we were led to believe. You are all in our
thoughts and prayers everyday.