[vaughanmk]

I work at a fairly small regional hosspital. 2 days ago I was transfered a patient with a rash, and stomatitis. (I work on a stepdown unit currently.) From previous experience on a burn unit, I immediatly recognized the case as Stevens-Johnson. I called the physician and after some debate he confired as did a second doctor.

This patient has a rash covering 50% of her body, bright red and still intact as of tonight. Her lips, mouth, and vagina are currently sloughing. The doctor is still having us nurses try to feed her and give her pills. She is in such pain she has become fairly somulent.

The only skin care being done is Cetaphil lotion QID. Tonight she developed a 4inch blister on her arm which appear as if it might open by morning. She is recieving 120 mg Solumedrol q8. The doctor says, "I am following standard of care." (note: i did not mention anything about IV morphine) only lortab and ms contin which she cannot swallow.

I am very concerned about this patient. She is dying. I cannot get the doctor to consult another doctor who has seen this before or transfer her to the ICU much less another hospital with a burn unit.

Can someone please refer me to somewhere where I can find a standard of care for Stevens-Johnson, so I can take it to the doctor and patient advocate so others know she is not recieving the care she needs.

Thank you

[nurseunderwater]

I am so sorry I have nothing to offer. I just wanted to respond to your frustration. I hope you and your pt get what you need.

[gwenith]

I'll do a search for you and see what I can dig up.

[gwenith]

Here is the e-medicine entry

http://www.emedicine.com/emerg/topic555.htm

Here is the Steven-Johnson Syndrome Foundation and it lists physicians who have experience with the disease

http://www.stevensjohnsonsyndrome.net/

http://www.sadap.org.za/edl/paed/5.2.asp

Those were the best post me if you want more but basically you are right - treat like a bad bad burn.

[cimersrn]

I'd say it's time to go over this doctor's head. If you're not comfortable handling this situation, turn it over to your nurse manager, but this pt needs you to continue to advocate for appropriate care. When these patients go south, they do so very rapidly and consequently need to be in a unit that's prepared and able to care for them. And the pain issue is very real!!! This pt needs better pain control and anti anxiety meds, such as fentanyl and versed gtts, as their pain is excruciating. Imagine your tissue blistering and coming off exposing the raw, tender tissue beneath. And not just on the outside of your body, but in your mouth, esophagus, nose, vagina, and just about anywhere else you can imagine! Please, continue to be this patient's advocate and do whatever you can to get them the care that they so desperately need.

[vaughanmk]

I was back in today. My nurse manager was back into town and I spoke with her about the situation. She agreed to pull the chart. In the mean time this morning she was started on iv morphine. Also her tpn/lipids that were finally initiated on Sunday were turned up. By 1pm the patient was in multisystem organ failure. The family agreed to make her a dnr when her abg showed and fiO2 of .50

I just hope she goes quickly, and the nurses on duty give her morphine every hour on the hour.

Thanks for you help, but I wasn't much help to her....

[gwenith]

How sad - sad for the family and that poor patient. Sorry I could nto help more.


You will probably feel guilt over a situation that was out of your control please don't try not to let it hurt you too.

[nurseunderwater]

i am so sorry.....

[vaughanmk]

When I left tonight she was still hanging on with an O2 sat of 43%. It cant' be much longer now. Thanks for all your advice and words of encouragement. Her only son is handling things wonderfully. He is ready to let her go now.

[gwenith]

Sad - it is such a devastating disorder and so few people know of it. Strangely I just nursed a woman just 2 days ago who had a florid drug reaction with skin sloughing but only minor - when the dermatologist came in to see her I casually mentioned that I had nursed SJS patients and he just nodded and said "she is very close to that". No recognition in the ward staff that they needed to monitor the patient for mucositis or relapse or any of the other problems with SJS. Not their fault it is such an obscure disorder.

I have the start of a resource thread here and I think I might expand on that so that those who are faced, for the first time with one of these patients can find some answers.