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Thank you for stopping in. I am using this space to write about my journey through space and time and share anything I believe may be of value to others in these uncertain times. It is my hope you find something here that will help you on your own journey.

Wednesday, March 29, 2006

Stevens Johnson Syndrome

Over three years ago, Quinn got braces and an expander put in. It was not the first time she had had some foreign metal installed in her mouth. When she was 7, the dentist had tried to control her thumb sucking with an appliance, but she contracted several persistant and penicillin resistant strep infections, and he took the appliance out as a precaution, because he could not rule out the possibility that the appliance was part of the problem.

A few weeks after the braces were installed, we again had to have a throat culture taken and Amoxil prescribed. A few days later she presented with what looked like pinkeye, so drops were prescribed. A day or two later her eyes and lips swelled up so the clinic sent us to the Children's hospital. The infectious disease clinic thought it was a virus but the eye clinic suspected SJ syndrome. The infectious disease clinic thought not because she did not have all the classic symptoms elsewhere on her body. Since only the mucous membranes in her eyes, nose and throat were affected they were reluctant to call it Stevens Johnson. They did not admit her, but asked us to return every day for a week so they could give her IV fluids, tylenol 3 for the high fever, and just keep consulting. They also gave her a 5 day course of Azithromycin.

She was no better after a week and they were no closer to a diagnosis. I got used to wheeling Quinn around the hospital between the two dueling clinics. It was wierd to see all the parents of other sick children looking so pathetically at the two of us. Were ther concerned for me or for Quinn or for themselves, wondering if she had some contagious disease? There was nothing wrong with her legs but she could not see properly because of the loss of the epitheum layer over her corneas and a membrane kept growing inside her upper eyelids. It had to be removed every few days. When she opened her mouth it was like that of a pus-filled monster in a horror flick.

I kept asking if she should have all the dental hardware removed. They finally shrugged and admitted it was worth a try. The orthodontist met us at his clinic on a Sunday morning and 20 minutes after they were out of her mouth, she opened her eyes for the first time in over a week!
The improvement was immediate and these pictures were taken by the eye specialist in the next few days.

The infectious disease clinic referred us to a dermatologist. He prescribed a concoction of Kao-Pectate mixed with xylecaine that Quinn gargled with before eating, to numb the pain of the food making contact with all that raw skin. He also ordered tests.

Quinn lost a whole month at school. Several months later she was sent to an allergist for more tests. She came out allergic to thiomercal, which is a preservative found in most eyedrops but that probably developed as a result of all the medications she was given while ill. The results showed no metal or penicillin allergy, but she was told to avoid both penicillin and ibuprophen as a precautionary measure.

I am writing this all down for one reason: to give someone else help and hope if they find themselves with a similiar, atypical reaction. The eye specialist said she was going to write a paper about this if Quinn turned out to have a proven allergy to metals. Sadly, there is no scientific proof that my own theory has any validity, the medical databases are so far empty. I think someday there will be a new syndrome discovered, a variant of SJ caused by the dual presence of metals and penicillin, neither allergy producing on its own but a deadly catalytic combination for some like my daughter. Posted by Picasa

1 comment:

Melanie (Stone) Perry said...

Wow... poor Quinn! That looks like it was a terrible experience.

I don't know if you're pursuing anything else, but, I thought i'd mention the braces I'm using right now, as they're all plastic!