Daughter of Early Dilantin SJS Victim Shares Her Story

Dilantin is an anti-seizure medication that has been used for decades to treat patients with epilepsy. While it’s effective at treating seizures, it’s also known to cause Steven Johnson Syndrome (SJS), an extremely severe skin reaction that’s often deadly if not caught, properly diagnosed and treated in time. Rebecca (last name withheld for privacy) lost her mother to this Dilantin side effect in 1978. 

Rebecca’s mother, Eleanor, died of Dilantin side effects well over 30 years ago. The cause of death in her autopsy report was Stevens Johnson Syndrome caused by an allergic reaction to Dilantin. Since her mother passed so long ago, Rebecca knows that she’s not eligible to file a Dilantin lawsuit seek or any legal action. However, she hopes that sharing her mother’s story will help save at least one life. 

A Mother’s Battle with Dilantin SJS

Rebecca recalls that her mother was independent, private and thrived on living alone. In fact, Rebecca never knew that her mother suffered from minor brain seizures or that Dilantin was part of her medication regimen. It wasn’t until Eleanor’s neighbor called Rebecca to tell her that she was being treated in a burn unit at West Pen hospital in Pennsylvania that the truth came out.

At first Rebecca thought her mother had been in a fire. With SJS, victims burn from the inside out and are often treated in burn units once the SJS symptoms become severe. There’s no cure for SJS. However, treating SJS symptoms can sometimes save lives if it happens quickly enough. 

When Rebecca arrived at the hospital, her mother’s doctor, Dr. Janus, told her that her mother had only been on Dilantin for two days. She awoke on the third day with blisters covering her body. She took a bus to the hospital since she was in too much pain to drive and too independent to ask for help.

It just so happened that a physician who walked by Eleanor knew about SJS and transferred her to the burn unit. Many physicians have never seen SJS and have only heard about it. Even today, it’s impressive to get a first, correct diagnosis for Dilantin side effects like SJS. Rebecca guesses that her mother would have died much sooner if it wasn’t for that doctor — but considering the pain and suffering she endured, she’s not sure that’s a good thing. 

Eleanor lived for six weeks in the burn unit and “went through hell,” Rebecca says. She recalls that her mom was covered from head to foot in blisters, and describes the pain as torture. Doctors tried to prepare visiting loved ones for the sight, but no words can prepare a person to see Stevens Johnson Syndrome in person. Her mother was on a strong morphine drip, but she screamed when touched or placed in water.

Initially, at four weeks, it looked like Eleanor might survive since she was growing new skin. At the time, that would have made her the only person to survive such a horrific SJS attack. However, once her trachea collapsed and surgery was required, she slipped into a coma for the last three weeks of her life. Rebecca recalls her mother always being petite, but the Dilantin SJS had bloated her so much that she wouldn’t have fit in a standard sized coffin. Rebecca never allowed her children to see or say goodbye to their grandmother since it would have been too traumatizing.

The Final Days

Rebecca’s children were confused about why they couldn’t see their grandmother, so she allowed them to attend the funeral. She remembers showing them her mother’s arm, and asking if they thought Eleanor would have wanted to live like that. Her children agreed that it wouldn’t have been a life worth living — although Rebecca admits her mother was also rather vain. She regrets not seeking legal help when her mother died, but she just had too much going on. Having recently lost her house and facing a divorce, she just didn’t make the time.

However, she urges others to take immediate legal action if they suffered Dilantin side effects. To this day, she reads the fine print of all medication and if SJS is mentioned as a side effect at all, she refuses it. Dilantin and Lamictal are just a couple of medications on the market that are connected to SJS, and there have been dozens of SJS lawsuits filed for both. 

Did You Get SJS from Dilantin?  

If you or someone you love was taking Dilantin and it caused SJS, you may qualify for a Dilantin legal claim. Learn more by visiting the Dilantin Side Effects Class Action Lawsuit Investigation right now. You’ll have a chance to submit your information, and a lawyer will contact you if you have a case for a free Dilantin claim review.