Yesterday afternoon (Tuesday, March 14, 2006) Richard and his father, along with Carmen and Karl, went to Arizona Medical Center, Burn Unit, in Phoenix, Arizona where Lisa was moved. The address for Arizona Medical Center is 2601 E. Roosevelt, Phoenix, AZ.

Yesterday morning, Lisa’s allergic reaction to the anticonvulsant, Dilantin, went from a simple skin rash to blistering body lesions. This indicated and led to the diagnosis of Stevens Johnson Syndrome. This syndrome is a more serious allergic response that causes inflammation in the skin and also the body’s mucus membranes. The cause of this increased response is unknown and the treatment involves treating the symptoms that it causes. Lisa was given steroids to lessen the inflammatory process before being airlifted to Phoenix. It was necessary to transfer her to the burn unit to treat the blistered skin and mucus membrane lesions. Once the surface of the skin is opened, as the blister’s break, treatment is the same as that given to a burn patient. Lisa must be protected against infection and the damaged skin must be removed on a daily basis to allow healing. Because this reaction affects mucus membranes, as well as skin, her respiratory and digestive tracks can be involved and she will need to be closely monitored. The reaction will have to run its course, but like everything else Lisa has had to overcome, this too is possible.

I have personally known two patients, a two year old girl and a 47 year old man with Stevens-Johnson Syndrome after a drug reaction. They both recovered completely from the injury to their skin and mucus membranes.

Last night Richard reported everyone’s safe arrival in Phoenix, but was not able to see Lisa until burn unit personnel were finished with Lisa’s medical evaluation and admission. I’m afraid an urban medical center will not have the same level of personalized attention that was given at Northwest Medical Center in Tucson, but the people who choose to work in a burn unit are a breed of guardian angels unlike any other and we all know that Lisa has her own army of them protecting her.

Friends and co-workers from the Phoenix area have already called and offered accommodations in their homes for Richard, Carmen and Karl. Richard’s dad drove our RV to Phoenix and will be at or near the hospital so Richard will have a bed and place to rest when he is not with Lisa.

Michael will pick up the torch and continue his updates in the next day or two when he returns from Phoenix. Michael and I will be keeping the home fires burning here at the house and caring for the very handsome and growing like a weed Michael Gene.

Within the last hour, (today, March 15, 2006) Richard has reported that the progression of the syndrome has stopped or to use his words “the river has crested, although still at flood stage”. After arriving in Phoenix yesterday Lisa is receiving the full complement of services offered by the Arizona Medical Burn Unit. In Tucson the Intensive Care unit had never treated a Stevens Johnson Syndrome patient, although they were well aware of the condition. The literature states that the incidence of this reaction occurring in patients receiving Dilantin is 4-6 patients per million. Lisa is one of two patients currently being treated for Stevens Johnson Syndrome in the burn unit and they average about one patient with that diagnosis a month.

One of the new treatment options that we had researched before Lisa’s transfer included the use of IVIG (Intravenous immunoglobulin antibodies), a total immune system antibody replacement. At Arizona Medical that treatment was part of the routine protocol used to treat Lisa when she arrived yesterday.

According to Richard this afternoon, Lisa’s skin inflammation has stopped progressing. Although she is being treated with sterile dressings for the open blisters on her upper arms and chest, the rest of the blisters have not worsened and the skin between the blisters is no longer an angry red. She looks better today and appears to be resting comfortably.

Lisa has not been responding as much as she was before the rash began but the new neurologist, Dr. Hochane, feels that this is not a neurological step backwards, but rather that her healing neurons are unable to compete with the magnitude of the allergic reaction. He expects her to regain the responses she had previously shown when the inflammatory reaction subsides.

The fact that Lisa already had a trach, an IV PIC line and gastric feeding tube in place meant that she did not have to undergo any of those procedures in Phoenix. They were able to restart the ventilator to assist her respirations without effort, have ready IV access and continue her tube feeding as indicated.

Although the plan now is to get Lisa back to Tucson when she improves, Richard has embraced the opportunity for additional physicians to be become familiar with her case and add their expertise to the mix. He will also research Barrow’s Rehabilitation Hospital in Phoenix for Lisa when she progresses to that point.

On a final note, Richard has expressed on numerous occasions how much he appreciates the outpouring of support by so many folks in so many different ways. The most recent example he gave was about his discussion with a friend and police Captain from the Tucson Police Department – David Neri. As Richard was updating Captain Neri about Lisa’s prognosis yesterday afternoon and reaching out to whoever he could to find a burn unit for Lisa, Captain Neri offered to make a call. As it turns out, that call was to Dr. Len Ditmanson, the current President of the Arizona AMA Chapter and was the call that made the difference in Lisa being given a bed a the Arizona Medical Center, Burn Unit. To quote Richard: “Everybody doing everything they can is what is really making the difference for Lisa.”

If you would like to comment or have questions, please send an e-mail to mlwintory@aol.com.

Sherry Wintory