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Anybody knows STEVEN JOHNSON SYNDROME????

Hi guys,

Any credible doctors here (hehe) that had experience treating a patient who was diagnose of steven johnson. My 2-year old son is a survivor of the said disease. He was confined last year at st. lukes for 9 days giving us a whooping bill of 80,000.00 (c/o intellicare HMO so ok lang).

Steven Johnson is a severe allergic reaction to some certain foods, drugs or chemical. It started as if parang simpleng bungang araw then after 2 days nasusugat na plus the fact na his skin once touch will be literally ripped off. They monitor the eyes, liver and kidney since yun daw ang most common part na naaapektuhan. Early days of his confinement, buong katawan nya parang na-burn.

Right now, his ok and makinis na ulit balat nya. Buti na lang naagapan kasi fatal daw. Medyo di common ang SJS, ang ratio is sa 1000 na tao, may 1 na steven johnson patient.

I'm a single parent and talagang high maintenance sya ngayon considering the following:

1. Hypoallergenic diet sya. Sobrang dami ng bawal. As in halos wala na sya pwede kain.

2. Dapat cetaphil lotion and soap lang gagamitin

3. celestamine ang maintenance drug nya 2.5 ml twice a day

4. Bawal pulbos and other related chemical like baygon, perfure or air freshener.

Kapag may maling nakain, nagkakarashes agad.

IS MY SON SITUATION CHANGE PAGTAGAL TAGAL?

THANKS!

Comments

  • Hi!everyone, i am a survivor of STEVEN JOHNSON SYNDROME.And i need people who experience and survived like me of STEVEN JOHNSON SYNDROME.BECAUSE I NEED IT FOR MY THESIS.I AM HOPING THAT ANYONE WHO SURVIVED SJS WILL HELP ME.THANKS AND GOD BLESS US ALL!

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