posted on Sep, 24 2009 @ 07:42 PM
I should state that these memories are of a sick nine-year old boy. Sometimes we forget that our memories are colored by who and what we are at the
time. To that end, my memories may be incorrect, or I remembered only the mundane.
Second, the intent of the original post was not about 'me', rather about what I seemed to see as an increase in the incidence of the disease. As
most seem to not be familiar with it, I will relate my memories (as above).
Finally, when this happened, Toxic Epidermal Necrolysis, or TEN was not a separate, but related diagnosis (so far as I am aware). As it was explained
to me (remembering that this was the way it was explained to a nine-year old), there was an 'internal' and 'external' form. I had a few areas of
TEN away from openings in the body, but they were few. Luckily, did not have TEN, and did not lose my skin.
Things started in September. I had just gone through the usual autumn/first days of school cold. As an ordinary 4th grader, I had received the usual
OTC meds. One Saturday morning, I woke up early, feeling that my mouth was filled with small water balloons. I woke my parents, who were naturally
startled. At this time, sores had begun to erupt on my lips and the whites of my eyes had begun to redden. Luckily, the on-call pediatrician had
seen a previous case and had me admitted immediately.
I spent the next 30 days on the pediatric ward. The SJS impacted all mucus membranes. The whites of my eyes were fire-engine red. My lips were
nothing but sores. I was unable to eat, due to the blisters and sores in my mouth. (Ice chips and IV's for 30 days).
My parents were told that I would die or be blinded. Neither happened, although my vision was slightly degraded. 'Miracle' would not be an out of
place word. I think that I slept a great deal. There was nothing that they could do, apart from treat the symptoms and keep me hydrated.
On a personal level, three regular things stick out in my memory. First, we didn't have cable at home. At this time, 'cable' was only about 10
channels, but one of them was an independent station out of Charlotte. This was a station that I saw when we went to our vacation house, or to visit
my grandparents. This station aired Ultraman on weekday afternoons at 4, if I remember correctly. I was thrilled to be able to watch this
show each weekday. My parents remember that I would perk up as 4pm came around. I honestly believe that the desire to see Ultraman one more
time kept me going from day to day. I may be wrong, and it may be silly, but that is what I believe. Second, I remember rounds. As I had an
unusual, and somewhat rare condition, it seemed like they bussed residents in to look, poke and prod. It either didn't bother me, or I was too sick
to care. Third, and the worst part was having to urinate. If this is a little graphic, I apologize. The 'sores' were also in my urinary tract,
and on the glans. As I was on an IV, I had to 'go' regularly. I assume that they were also concerned with renal failure, as my production was
tracked. In any event, it hurt, a great deal. I was not catheterized, but they threatened it when I refused to try to go. Once, the nurse said that
it would be OK if I screamed, so I did.
My folks took it in turn to stay with me. Until I had children, I did not appreciate what they went through. Mom is an RN, and she kept a tight
watch over me. One of the physicians in the practice where she worked was an Allergist, and he had also seen a case previously. He would always drop
by when at the hospital on his rounds (and when not, I suspect). Kindnesses done by others is another strong memory from this time.
Apart from scarring on my lips, and other places, as well as the previously mentioned slight vision deficit, my life has been as normal as life is.
At one time, I was told that it likely will shorten my expected life span, but there is no guarantee that I will not be T-boned in an intersection by
a drunk driver tomorrow, so that does not worry me.
My apologies if this went long, and I am sure that I have not mentioned every detail