My daughter is a survivor of Steven-Johnson Syndrome

I am a mother of a survivor of Stephen-Johnson Syndrome. My daughter had just turned one when she had it, and I almost lost her. It was a very horrifying experience, and I know that it is a need that the public should be informed about this disease.

Steven-Johnson Syndrome or SJS is an allergic reaction commonly caused by medicines. Also, certain viruses and bacteria could also cause this disease. In the case of my daughter, her SJS was caused by a medicine against amoeba-Metronidazole. I never expected it, and never did I think that my daughter will have it. Metronidazole is the drug of choice for intestinal amoebiasis . In fact the children of our pediatrician were also under metronidazole medication when my daughter was taking it.

SJS is characterized by rashes or lesions which involve the skin and the mucous membranes. This includes the insides of the eyelids and the eyes, nose, mouth, ears, and for females, the genitals. The rash usually appears days or even weeks and months after the initial intake of the medicine and starts within the head area. It could be on the face or at the back of the neck. For some the rash starts below the eyes. It would appear like a swollen eye bag, or even like a black eye because of its deep red color. In the case of my daughter it started at the back of her neck. It appeared like a scaly dark red, almost black patch just below her hairline. It appeared 3 days after her initial intake of the medicine. She was prescribed to take it for 7 days, and it was on the label that rashes may appear during the intake. So I did not worry too much. But a mother still I am, I wanted to be sure. So I went to the doctor and he told me his kids had it too and it will go away after she’s through with the prescription. So since the doctor said no worries, I forgot about it after we’re home from the doctor.

A day after we went to the doctor, my sister noticed that when my daughter woke up she had swollen eye bags. I have never heard of SJS before and also there was nothing about SJS in the label of the medicine. I thought the swelling was just caused by her crying the past night. So I did not give too much attention on it. When I prepared to give her a bath at nearly lunch time I was alarmed to see that the swelling covered a larger area, and its color turned deeper red. After giving her a bath, we rushed to the hospital. Her doctor was not around that day so she was seen by another. They gave her anti-allergy drops and assured me that there is nothing to worry about. I don’t know but inside I was not convinced that there was nothing to worry of. A mother’s instinct is always right, barely 12 hours after seeing the doctor, around midnight my daughter would not stop crying. She didn’t want to lie down, and she’s turned red all over. I know that she can’t breathe anymore as evident to her not wanting to lie down. And apparently her whole body was sore because she didn’t want me to touch her and hold her. And she was so hot. I know something’s just not right, the drops did not work. Her rashes, instead of subsiding, it went worse. I called my mom and to the hospital we rushed. In the hospital the doctor who saw us the other day had no idea what was wrong, but still he had her injected with non-steroid anti-allergy drugs, with antibiotics. Still she did not turn well, instead, her skin started to slough off as if she bathe with boiling water. It was painful for her to urinate, even cry. Every inch of her body was blistered! I was so grief-stricken; I didn’t know what was happening with my daughter! When the doctor was informed on what was happening, he referred my daughter to another doctor, an allergy specialist. There I learned about SJS. And that time my daughter is already in critical condition, hours more and everything would almost be too late. They gave her lots of steroids and antibiotics. I know that steroids is harmful to babies so while on medication, I gave her aloe vera gel so that her body will have a fight against the harmful effects of the steroid. Also, I used aloe vera gel as a topical lotion to soothe her blistered, almost burned skin. We stayed in the hospital for a week, and the doctor was so amazed with her fast recovery.

My daughter is now 3; it’s been two years since that incident. Looking at her, none would think she is a survivor of SJS, because she’s only left with small keloids on her stomach.

SJS is an allergic reaction that involves the whole body. It is fatal and most survivors suffer a lot of pain, suffering, distress, and lifelong debilitating effects, both from the trauma to the disease itself and the scarring that it causes. For most survivors, they are left with permanent scarring due to the skin’s sloughing off during the course of the allergy. Some are even left blind, and deaf. That is why it is important to know the facts and helpful remedies and what to do’s of this ailment.
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