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SJS Dilantin: "My Mother Died in Agony"

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White Oak, PARebecca's mother died in 1978. Her autopsy reports that the cause of death was Stevens Johnson Syndrome (SJS), and doctors explained to Rebecca that the cause of SJS was an allergic reaction to Dilantin. Rebecca knows that she cannot file a SJS Dilantin lawsuit due to the statute of limitations, but she welcomes the opportunity to warn the public about this anti-seizure drug.

"My mother, Eleanor, was a very private person and she lived alone," says Rebecca. "She never told me that she had minor brain seizures and that she was taking Dilantin, so when her neighbor phoned and told me that my mum was in the burn unit at West Pen hospital, I thought she had been in a fire.

"As soon as I got to the hospital, Doctor Janas told me that mum had been on Dilantin for two days—just two days to kill her! Apparently on the third morning she woke up swollen and had blisters all over her body. And just like my mum—fiercely independent—she took a bus to the hospital (she didn't drive)…"

Coincidentally, a doctor passing by Eleanor's bed was familiar with SJS and that is when she was transferred to the burn unit. Back in 1978, Stevens Johnson Syndrome was very rare, and to this day many doctors, particularly in rural areas, don't know what SJS is, and that it is caused by an allergic reaction to a drug. These days so many people are taking so many drugs that SJS isn't so rare. If not for that doctor, Eleanor would likely have died a lot sooner, but knowing the agony she went through, that might have been better.

"My mum spent almost six weeks in the burn unit," says Rebecca, "and she went through hell. She was wrapped up in silver; she was completely covered in blisters except for her face and feet, and she had a blister the size of an orange hanging off her ear. Those last weeks of her life were torture.

"I remember the doctor telling my husband and I to 'prepare yourselves because it isn't a pretty sight.' My husband was so sick he had to leave the room—it was horrific. Although my mum was on morphine, they put her in a pool and she just screamed; they couldn't even touch her. After about 30 days in the burn unit, Doctor Janas called me. He couldn't believe that she was growing new skin. 'If she survives she will be written up in journals because no one has survived SJS to this extent,' he said.

"Her trachea collapsed and they asked me for permission to perform a tracheotomy. After surgery she was in a coma for three weeks until she passed away. Then they asked me if it was OK to perform an autopsy; I said go ahead.

"My mother was a petite woman but when she died, she was so bloated. The funeral director said it was a good thing she had an autopsy because they likely couldn't get her into a coffin otherwise; she was that swollen.

"I didn't take my young kids to see their grandma in hospital—it would have been too traumatic—but they went to the funeral. They were crying. I pulled up my mum's sleeve, showed the kids her bare arm and said, 'Do you think grandma would have wanted to live like this, scarred so bad?' They said no. (She was also a vain woman.)

"I had never seen anything in my life like it and I hope I never do.

"Unfortunately I didn't seek an attorney when she died. At the time I was getting a divorce and had just lost my house. I bought an old clunker and someone hit me and totaled the car. And I lost my job because I took too much time off to go to the hospital—it never occurred to me to file a lawsuit.

"But it isn't too late to warn others. Over the years I have had many prescriptions and when I read SJS listed as a side effect, I refuse to take that drug. It is my hope that everyone reading this will do the same. And if it isn't too late, consider a lawsuit.

Photo: Rebecca's mother, Eleanor.


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Posted by

I am so sorry for your loss. My mother takes dilantin and has had some very weird side effects. After reading this to her she will be talking to her dr about changing to something else. Thank you for sharing your story, brenda wis

Posted by

I spent 20 years on dilantin for mild seizures. I gained a significant amount of weight, which is a well known side effect of the drug. One doctor told me that of all his patients on dilantin, the least amount of weight anyone gained was 50 pounds. One member on the epilepsy support board of Harvard reported that she gained 80 pounds in 3 months. In addition, dilantin causes gum hyperplasia, tooth grinding, tempormandibular joint disorder and bone loss. I have spent thousands on dental care, including surgery to cut away the extra gum tissue. I have 3 implants and a partial bridge, all of which I attribute to the drug. My periodontist insisted that my neurologist switch me to another drug because of these side effects. As soon as I switched to another drug, the tooth grinding and TMJ went away. All of the anti seizure drugs cause some side effects, but this is the worst. Dilantin-the gift that keeps on giving.


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