Lily! As told by her mother Tami.

Our world changed on September 17 this year. Having 2 FASD/Bipolar adopted children we are used to the chaos and the surprises we get every day. It is a constant battle for "normalcy" and good behaviors. A day without some twist and turn is almost unheard of here.

Lily woke up with scratchy eyes Saturday, by that afternoon her eyes were swollen and oozing. The worst pink eye I had ever seen. Sunday morning she crawled in bed with us and said "she fell" and her lip hurt. Her lips and inside of her mouth had swelled at least 3 X larger. She was miserable. For a child with an abnormally high pain threshold, she told her daddy "I don't feel well". ER visit by 8 am that day, he sent us home with conjunctivitis and stomatitis diagnosis and instructions to return if decrease fluids etc. etc. The following 20 hours were a blur as she developed a fever and the funniest little red rash on her face. She also quit drinking around 8 PM. Monday am, 48 hours from first symptom we were at our Pediatricians. Two hours later she was fighting and screaming as they started IV's, X-rays and Respiratory treatments.

On Wednesday she was transferred to the children's hospital here in town and her "official" diagnosis of Stevens Johnson Syndrome was given. The deciding cause of SJS was Lamictal. Our 7 year old Lily had been taking this medication for almost 12 weeks for her seizure disorder and as a mood stabilizer for her Early Onset Pediatric Bipolar Disorder.

Her treatment consisted of IVIG (3 treatments), PICC line to administer her TPN and medications, wound treatments (which were a joke as she wouldn't leave a bandage on for more than 5 minutes), catheter as she was so inflamed in the genital area and unable to urinate, at least 200 wash clothes and 50 sheet changes a day due to all of the open wounds plus the ones she used to keep her mouth empty...

The IVIG treatments stopped/slowed the progression of the lesions to about upper mid thigh area but she is losing her finger nails now and the bottom of her feet have peeled twice. She came home at 3 1/2 weeks but was admitted again 3 days later because she quit drinking again and was sent home with another PICC line and TPN at home. She then developed severe anemia (7.0 HGB) and was admitted again. This time they found a duodenal ulcer and many in her digestive track that were healing.

We never heard of SJS until September 19th. For our beautiful little girl the scars are obvious, the damage to her eyes still unknown and she lives with a constant "itch" to her skin. Two and a half months down this road and we have seen a glimpse of our old Lily. She has even asked about her "spots" and if she is going to "die".

We have worked so hard as the parents of this little Alcohol/Drug Exposed/Developmentally Delayed/Seizure Disorder/Asthmatic/Bipolar little girl whom we adopted at birth. Our biggest heartbreak has been that she has lost almost all of the skills we taught her. I carry a diaper bag again, daily living skills are a chore and the regression of her social skills is devastating.

Would we have done anything different? We are not sure. Her medical needs called for a good prescription. If I had read the entire Lamictal insert and seen the SJS at the bottom, would it have made a difference? NO. I didn't know what it was. We do now...

I do see Lily becoming more and more aware of life again. Even though she doesn't recognize herself in the mirror she will ask about being sick. She tells me she loves me, and even has reached out to her dad for comfort. She walks around outside, plays with the dogs, and will color every once in awhile. She has come along way, and has a long road ahead.

The pain and terror we saw in face during the first few weeks of SJS is something no parent should live with. All of this caused by a drug. A drug that was supposed to help her cope with life. We will pick up the pieces and she will find her way again.

Thank you for letting us share a small part of Lily's Story.

Tami and Clarence Kent & family....especially Lily