Happy and healthy…that was the history of the Smith family. The Smith family had no known illnesses in their family histories. They and their seven year-old daughter, as well as their newborn son had enjoyed good health… until the sudden onslaught of an epidermal nightmare that caught them totally off-guard.
Baby Jeremiah was three months
old when he began to suffer from what his pediatrician thought may be contact
dermatitis. His parents had already begun taking measures to combat allergic
reactions and skin sensitivity. Within three days, a scratch on his face
developed a small blister and morphed quickly, becoming a large infected area.
An emergency room physician diagnosed Jeremiah with severe eczema, and prescribed
treatment with over-the-counter (OTC) topical steroid creams. Little did his parents
know that he may have been misdiagnosed, and that his condition would worsen
with each application of the topical steroid ointment. In the months that
followed, they would find themselves in a fight for his life.
In the weeks and
months that ensued, the tiny infant’s health continued on a downward spiral. An
itching, red, blistering rash covered his body. “He would scream and cry day
and night, and had to be held 24/7 because we could not lay him down. His body
was oozing and seeping fluid, and I slept holding him in a recliner, covered
only by pillow cases, as blankets made it worse,” recalled Jeremiah's mother. “Soon, he
stopped meeting his milestones.”
Doctors suggested an “elimination diet”, for Jeremiah's mother, who was breast feeding. His parents also continued to remove everything in
the house that could possibly cause an allergic reaction. The dog was confined
to the laundry room and a large pen outside. They tried using an air purifier.
They isolated themselves from family and friends…life began to feel lonely and
hopeless. Still, Jeremiah’s condition worsened as they chased the “severe eczema”
rash from head to toe with OTC topical steroid creams that most doctors told
them would cause the rash to cease.
No vitamins,
supplements, probiotics, or allergy medications helped. His pain and suffering
continued, and he only experienced a bit of relief in his baby tub with water
running and circulating around his body. Up to a dozen times throughout the
day, Jeremiah could be found in his little tub, which was stretched across the
kitchen sink. “Baths were the only thing that seemed to give him some relief,”
said his mother. “I would let him stay in the water for 30 to 45 minutes at a
time, and he would be at rest. I hated to take him out…he would begin screaming
and crying again.”
Day after day,
through torment, tears, depressing thoughts and lack of sleep, the Smith family kept their faith. “Just when I would think that I was at my breaking
point, the Lord would breathe on me, and I would press on another minute,
another hour, another day, another night. I would hold Jeremiah, cry, and pray,”
said his mother. “His sister would draw pictures of Jeremiah, both sick and healed. Healing Scriptures were posted all over our
home,” she added.
Jeremiah's mother had prayed for healing ministries for both of her children. Throughout
this ordeal, she never ceased to trust God.
She found consolation in Scriptures such as Psalm 91, I John 4:17 and
Jeremiah 33:6, in which God promises, “Behold, I will bring health and healing;
I will heal them and reveal to them the abundance of peace and truth.” (KJV)
However, Jeremiah’s
condition continued to deteriorate. The same blistering condition that covered
his body began to affect him internally. Jeremiah was lethargic and losing his hair.
His body temperature became unstable. During his first extended hospital stay,
doctors removed him from breast milk, inserted a GI tube, and treated him with
four rounds of IV steroids and three other topical steroids. In a brief respite
from Jeremiah’s torment, his parents saw a glimmer of hope. However, it was
short-lived. After being released from the hospital, Jeremiah began to itch and
pour fluids from every pore of his body as he screamed for 48 hours straight.
Desperate for
answers, Jeremiah's father began to search the internet, typing in “steroid side-effects”.
Shocking pictures of people whose conditions mimicked Jeremiah’s stunned the
young father. He immediately called to his wife, who typed in “steroid cream
side-effects” on her phone. There, she found a website and blogs explaining the
cause for the horrendous suffering of their son. Jeremiah’s conditions, Red Skin
Syndrome (RSS) and Topical Steroid Withdrawal (TSW), developed as a result of
an allergic reaction to OTC steroid creams, and a consequential dependence on
steroids. In order for Jeremiah to recover, the use of steroids in all forms
would have to cease.
“God answered
prayer through a fellow sufferer named Joey, who had shared her journey in a
blog. Also, through a non-profit organization, the International Topical
Steroid Addiction Network (ITSAN), we met people who would help carry us on
into healing. We were drowning in the unknown for months. We had found hope,”
shared Jeremiah's mother.
“At Jeremiah’s next
doctor’s appointment, I shared information about ITSAN and some of the blogs
that we had found. The doctor admitted to having never heard of anything like
it, but opened his laptop and started digging. He was very open to the
possibility, thank God, and like us, just wanted concrete answers,” stated Jeremiah's mother.
Through what they
learned, the Smith knew that things would get worse before they would get
better, which is characteristic of TSW. Jeremiah’s health continued to decline.
At six months-old, he weighed only 10 pounds, and was labeled “failure to
thrive”. The skin on his swelling body
began to split and pour fluids, causing low albumin and electrolyte levels.
Vomiting, diarrhea and dehydration began to wreak havoc on his weakened system.
He began to show signs of renal failure. Over the next couple of months, Jeremiah
was hospitalized two more times, but his parents would be guarded over his
treatment, refusing to allow doctors to use steroids. During his last visit at
Scottish Rite/ Emory Children’s Hospital in Atlanta, physicians ruled out the
possibility of any other diseases or syndromes.
“We found out
during those two extended hospital stays, through conversations with many
around us, that people thought our rejection of steroid treatment was ludicrous.
In blog after blog, we read that many suffering from TSW/RSS had the similar
experiences, and that doctors were trying to shove steroids straight down their
throats. This is a very real issue, worldwide,” Jeremiah's mother declared.
“Just because
the mass of population tolerates topical steroids well, does not mean that
there isn’t a group of people that cannot. The majority of doctors,
dermatologists and allergists think it is IMPOSSIBLE for steroids to have
adverse effects, but steroids are not for everyone. Serious side-effects can
develop even years after treatment. It took less than 10 applications for
Isaiah to develop RSS. A few dollars-worth of OTC steroids produced
excruciating pain and suffering, not to mention over $100,000 of hospital bills.
It has become our mission to put a face and voice to the horrible side-effects
of this common, over-prescribed, potent drug that is used worldwide. People may
be suffering from topical steroid addiction and not even know it,” she added.
This week marks Jeremiah’s sixth month of TSW, and he is improving. His body temperature has
regulated, and his parents are able to hold him close again and cover him with
blankets. They now change his bandages only three times daily, as most of the
seeping has stopped. “Flare-ups” now occur weeks apart, and most inflamed areas
are in locations where the topical steroid creams were actually applied. His
albumin level has climbed, and Isaiah continues to gain weight.
The Smith family is still cautious due to the threat of staph infection and Jeremiah’s
delicate condition, but life is getting back on track. They look forward to
things returning to normal. “We have missed life in general…our family, our
church family and our friends, but we give God glory for all of His blessings,”
said his mother. “Christ is our saving Grace, our Strength, and our Joy in the
midst of tribulation.”
“This entire
journey has been indescribable in both good ways and bad. The physical torment that Isaiah endured was horrific. It took its toll on the
entire family, but taught us valuable lessons and instilled in us a new sense
of God’s faithfulness. Our purpose to raise awareness and provide support and
encouragement to others enduring this battle has afforded us an opportunity to
minister the love of God through our testimony. God is using this season that
we are coming out of in a mighty way,” she added.
To learn more about Red Skin Syndrome,
visit http://redskinsyndrome.squarespace.com/
. If you or know someone you know has severe, worsening eczema and has been
using topical steroids with no improvement, visit the ITSAN website for
information concerning TSW and RSS at www.itsan.org
There is HEALING and HOPE… press on and NEVER GIVE UP!
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