Dear Moms and Dads of Child Warriors in Topical Steroid Withdrawal

I see you.  In the hardest moments you are not giving up.  You are doing the right thing.  Listen to your child.  Be their witness.  Be their warrior.  Your child in TSW is your guide.  Trust their instincts.  Trust yours.  This will get better.  In the picture above, my son Max was five years old and we were celebrating his one year Topical Steroid Withdrawal anniversary.  Today he is nine years old ~ five years TSW ~ healing and thriving!  What would I tell his mom five years ago?

Try to imagine what you can’t see.

Topical Steroid Addiction and Topical Steroid Withdrawal is going to try to take every single part of you, whether you are the warrior going through this horrific condition, or the parent and caregiver to one.  It propels us towards insanity.   There is no more normal.  There is survival.  We, parent caregivers to TSW warriors, endure the nightmare of seeing our child devastated and suffering and know a fierce, protective compassion towards anyone going through this terrible, preventable condition.  Our eyes see through a face on fire with burning, oozing skin.  We feel the insecurity and desperation.  We wish every TSW warrior could see what we see.  Possibility.  Courage.  The wholeness in their being that radiates through even the worst stages of healing.  We see beauty because we see strength.

It is so hard for the TSW warrior to see themselves as positive, brave and resilient during the darkest parts of the journey of Topical Steroid Withdrawal, and it is equally hard for the parent caregiver to bring this truth into focus when we see our own child covered in painful rashes.  Our baby.  We carry guilt and regret.  We struggle.  We are desperate for healed skin.  We are helpless to our child’s panic, the itch, the nerve pain, the weeping wounds, the endless shedding skin, the bloody sheets and clothes, the agonizing pain and the regret after they scratch away their skin.

We see our child through the sounds, “Itchy.  I am SO itchy!  Itch my feet!  The top of my feet!  Itch my thighs!  Itch it!!!  I’m sorry.  Do you forgive me?”  To see your child, you must see through the agony of those moments.  Your child is there.  Your happy, strong, brave, heroic, normal, kind, wise, beautiful child is there.  When you look at your child, try to imagine what you can’t see.  The potential to heal.  The courage to fight.  The good moments ahead.  See with your heart.  Never EVER give up hope.  No matter what you go through – never give up hope.  Your wish to free your child from this pain will come true.   

Tell your story – change a life – just as TSW warriors and caregivers did for you.

Topical Steroid Addiction and Topical Steroid Withdrawal took my four year old son and our family to hell and back.  At Max’s one month old well child check up his skin was clear.  He received a vaccination and soon after developed a neck and diaper rash.  At his two month check up he was put on an antifungal for the rashes, and he received three more vaccinations.  At Max’s three month check up he had been experiencing a rash in his armpits and neck when the antifungal cream was stopped.  At four months old he had a persistent rash under his neck, behind his knees and elbows.  We made the mistake of agreeing with his pediatrician to treat his rashes with a topical steroid cream.

We followed our pediatrician’s recommendation and applied a Class VI topical steroid cream (the weakest being class VII), on Max’s rashes.  At nine months we learned he was allergic to nuts, soy, egg.  We agreed to apply what we would later learn was a Class III topical steroid cream (the strongest being class I), to his rashes.  We followed our pediatrician’s instructions to use these topical steroid creams on our baby as needed for years.  What was the incentive for a doctor to put a three month old baby on prescribed topical steroid creams and to continue to prescribe steroid creams for close to four years?  Why didn’t we refuse?  The answer to both may be: we didn’t know what we didn’t know.  Over time we learned Max had other food, environmental and drug allergies.  We had no idea that the treatment for his skin rashes (topical steroid creams), would become the cause of his greatest health issue by age four years.

At three years old, Max broke out in hives after taking children’s ibuprofen.  We went to the ER and he was treated with a strong oral steroid.  The next day his skin flared three times with large symmetrical rashes.  It was a warning to his extreme sensitivity to steroids but we didn’t know it then.  At 4 years old, we could not figure out why Max was dealing with uncontrollable spreading rashes.  The steroid creams had stopped working (not that they were helping, they were just suppressing the rashes for a short time).  Max was no longer sleeping at night and his skin rashes were spreading.  A doctor put Max on a five day dose of an oral steroid.  Max’s pediatrician, put him on a 16 day dose of an oral steroid.  After the rounds of oral steroids, Max became highly reactive to environmental allergens.  He could not walk across grass without tearing at his legs due to severe itch.   We couldn’t go into stores as he reacted to fragrance with terrible arm and leg itch.  An allergist tried to convince us to put Max on an immunosuppressant and we refused.

Our Ah-ha moment came in the spring of 2014, after hours of Internet searches, when we  discovered a nonprofit called ITSAN (International Topical Steroid Awareness Network), and images of children with the exact same skin rashes and symptoms as Max.  Thank you brave TSW warriors and parent caregivers for sharing your experiences.  Your stories changed our lives.  We found information that explained how Max’s rashes had gone from classic eczema = small patches of eczema in creases (wrists, back of knees, under earlobe, neck) as an infant, to steroid induced eczema = uncontrollable spreading eczema.  We learned that he had become addicted to the synthetic cortisol in the topical steroid creams.  This preventable condition causes blood vessels to vasodilate up to three times the normal size and the result is extreme nerve pain and itch.

In June of 2014, we stopped all topical steroid creams.  Max went through “Red Skin Syndrome” also known as Topical Steroid Addiction and Topical Steroid Withdrawal.  We vowed to make it right for him and to recover the life we envisioned for our family.  We were isolated but we were not alone.  We became part of a tribe of unstoppable TSW warriors, parents and caregivers.  They taught us through their stories.  

Ask for help – find your guides.

If I could go back, I would not have tried to do this alone.  Each time we found someone we could trust and lean on, a new path to healing opened for Max and for our family.  School has been the most life changing place for healing and growth for Max over the past five years.  His extraordinary team from school nurse, to teachers, guidance counselor, support providers and principal have moved mountains.  In the beginning, he could only do a few hours of Kindergarten a week.  He was not sleeping and exhausted each day.  If he scratched his legs too hard at school he would not be able to walk.  We took him out of school in January and kept him home to rest and heal.  He spent months on the couch.

Max was able to attend first grade full time.  He would visit the nurse daily and I would be called in daily and sometimes more than once a day, to help him get through tough episodes of nerve pain and itch.  We were grateful that he was well enough to attend school and able to return to class after those tough episodes.  One night that spring, he developed a restricted inhalation, possible environmental allergen or viral.  He was seen in the ER, admitted to the hospital and treated with an oral steroid and an inhaled steroid.  We had carefully weighed the risk of his respiratory issue with our concern for his extreme sensitivity to steroids.

Max recovered from the respiratory issue, but he suffered terrible side effects to both the oral and inhaled steroid.  He rebounded to stopping the steroid inhaler with extreme neck swelling bringing us back to the ER.  We know he will never use a steroid inhaler or a topical steroid cream again in his life.  We have found providers who understand steroid allergy, rebound and risks.  These providers include a trusted nurse practitioner, naturopath, osteopath, counselor and integrative dermatologist.  We have been able to share Max’s health challenge with some and not with others.  Max’s grandmother is a nurse and she attended medical appointments with us and took notes.  TSW has taught us to advocate for health needs that are not often understood.  It has taught us to trust our instincts.  To appreciate every moment of health as a dream come true.

Heal the healer – be gentle on yourself and let each mistake guide you for the better.

Being a caregiver to a child warrior in TSW can feel like you have been robbed of the identity you imagined for yourself as the parent of a healthy child.  You wanted to be more patient.  To laugh more.  To sleep normally and feel healthy in body, mind and spirit.  You wanted your child to get to be a child without the weight of experiencing a pain that runs so physically deep and emotionally wide.  You wanted to be playful instead of frustrated.  You wanted to say all the right things in the worst times.  You wanted to be different from this, a better parent and a better partner.  You wanted your child/ren who will never go through TSW firsthand, to have never known seeing their older or younger sibling in so much pain and need.  You didn’t want any of this.

Coping as a parent caregiver is different for everyone.  Peace for me was in celebrating the pain free moments that slowly and steadily expanded.  For TSW warriors healing is not linear. Healing surges may come with skin setbacks, and setbacks may come with surges.  I cherished the people in my life, from loved ones to strangers, who asked questions about Max’s condition, and stood by us when we fought for the right care and for time to heal.  The more connections I made with medical providers who understood the terrible side effects that Max had experienced from steroids, the more I healed as his caregiver.  The emotional and psychological intensity of TSW is tied tightly to the physical intensity.  TSW reminds me of extreme weather that intensifies and subsides in cycles, over time reducing in frequency, duration and mass.  As a parent caregiver, I will weather any storm, but I have so much more to give when my state of mind is nourished with fresh air, sunlight, quiet healing moments.  There were many times when I had to imagine this place in my mind.

On my son’s five year Topical Steroid Withdrawal anniversary, with healing still to go but the most amazing third grade school year winding down, I would tell the mom from five years ago this…You will never stop fighting for what your child needs and deserves.  Never.  When you have reached the place where you can’t endure anymore, you expand, you survive.  You are enough.  You are more than enough.  You are stronger each time you fall and get up again.  Your warrior child will heal.  You will heal.  You, brave siblings of child warriors in TSW, are unstoppable too.  You are not invisible.  You are loved.  And you warrior children in TSW,  you are heroes.  You are strength.  You are light.  You are loved.  You are enough.  To you and your warrior parent caregivers, I say keep going.  Keep fighting.  Keep believing.