Death from Stevens-Johnson Syndrome (SJS) caused by Dilantin

Fort Meyers, FLMore than 10 years ago, Cindy's Mum was given Dilantin because her doctor thought she had suffered a stroke. But a stroke was the least of her concerns: To this day, Cindy is sickened and disgusted with the makers of Dilantin for causing her mother to die a horrific and painful death after developing Stevens-Johnson Syndrome (SJS).

About three weeks after she started on the Dilantin, Cindy's mother complained of a sore throat and developed a rash. "Her doctor said she probably had an allergic reaction to something she ate and it would soon clear up," says Cindy, "but the rash got worse, to the point where she couldn't even swallow—it was in her mouth, on her tongue.

"We called the doctor again and he said to go ahead and finish the prescription and not get a refill. If the doctor would have taken mum off Dilantin a week sooner it may have saved her life.

My mum lived in an adult care center and she was in such pain that I spent the night with her. By 6am I got her into a wheelchair and took her to ER. She had a fever and chills and was really miserable. They did some blood work and right away the doctors said, 'We know what it is: she has SJS from taking Dilantin'. She never left the hospital.

Mum looked like she had a second degree burn all over her body and as the days went by it got worse, to the point where we didn't even recognize her. And she could only eat popsicles because her mouth was so ulcerated with this rash.

Then she had trouble breathing so they put her on a respirator. We had no idea that she would never come off it, we thought it was temporary. We had no idea what Dilantin SJS could do to someone--I found out that SJS Dilantin effects just eat you from the inside out.

Because she was so itchy and in pain from the rash they sedated her so much that we couldn't even talk to her. It looked like she was disintegrating right in front of us. She started bleeding from the mouth and then her kidneys shut down; this all happened within a week. Then she was gone.

My mum was 74 but very viable before she took this drug. She was always visiting people, walking around, playing cards. We didn't get to have an open casket because people would have been horrified. I don't have any closure because for me, seeing someone in a casket one last time is closure: not being able to do that really hurt me.

Just before she passed, the family gathered around her bed but we didn't know what to do. Very loudly we asked her, 'Mum do you want us to let you go and be with the Lord,' and that is the only time she made any movement-- she nodded yes.

If she stayed alive it would have been so painful and I believe she knew it. All her skin would have to be peeled off. There is a certain smell to a decaying body; the doctor told me the inside of her body looked just like the outside—that is why her stomach was bleeding.

To the makers of Dilantin I want to say this: you shouldn't put anything on the market if it has the possibility of harming a person. I know a print-out on Dilantin said it could cause SJS but we never read it. You usually do what the doctor says but this has changed everything I do: from now on, I read the fine print on every label and decide whether it is worth taking.

This drug has left me feeling disgusted with the pharamaceutical industry for making all this money and the FDA for putting Dilantin on the market and subsequently killing people.

My mother's death certificate states that the cause of death was SJS caused by Dilantin. You never think that something like this will happen to you or anyone you know. It happened so fast—we didn't even get to say goodbye."