Caregivers – Appropriate Care Roadmap

Supporting and Protecting Your Family: Your Right to Access Appropriate Medical Care For Your Child During TSWS

ITSAN (The International Topical Steroid Awareness Network) encourages anyone going through Topical Steroid Withdrawal Syndrome or caring for someone in TSW to work with a TSWS supportive doctor in order to access appropriate care.  ITSAN does not diagnose or recommend treatment or medication.  ITSAN maintains a list of TSWS (Topical Steroid Withdrawal Syndrome) supportive doctors recommended by members.  If you are looking for a place to start, check the list in the Files section of the Facebook group: ITSAN Topical Steroid Withdrawal Syndrome Support Group – Private Group 

Please note that ITSAN has not vetted these healthcare providers independently. These practitioners have been suggested as “supportive” by members of ITSAN support groups. This usually means supporting your wishes to use a ‘no steroid’ approach, and does not always mean they are familiar with TSWS (Topical Steroid Withdrawal Syndrome). You may want to confirm their perspective on TSWS before booking an appointment.  

Share your TSWS supportive healthcare provider’s full contact info (name, address, phone) to be added to ITSAN’s member recommended list. Email ITSAN at: info@itsan.org  

As a caregiver advocate and parent to a child who is now seven years TSW, before I was able to establish care with a TSWS supportive doctor, I created my own roadmap to protect my child and my choice not to pursue a treatment (topical steroid creams), that had worsened his condition. I knew of other parents of children who had experienced extreme, iatrogenic reactions to topical steroid cream treatment and who had experienced the risk and stressors involved in advocating for appropriate care. The suggestions below are from my experience of what my family did while my son went through TSWS. This roadmap highlights ways to be proactive in advocating for your child and family during Topical Steroid Withdrawal Syndrome.  

For our family being prepared as a parent caregiver during TSW meant: 

  • Bringing a family member to medical appointments as a note taker for medical accountability until we established care with a supportive and trusted pediatrician/provider.
  • Accessing copies of all of my child’s medical records. 
  • Correcting inaccuracies in his hospital records and former pediatrician’s medical records.  
  • Keeping photo documentation of his TSWS journey, including when his symptoms were worsened by treatment. Labeling the treatment, class, dose and duration.
  • Printing the drug information for every topical, oral and inhaled steroid he had previously been prescribed and highlighting every adverse reaction he had experienced and ADDING the ones not listed.
  • Reporting adverse topical steroid cream and other drug reactions to the FDA (Food and Drug Administration). https://www.accessdata.fda.gov/scripts/medwatch/index.cfm
  • Establishing care with a pediatrician who included steroid allergy in my child’s medical records.  
  • Establishing care with a naturopathic doctor to coordinate lab work and guide us in ways to treat the underlying cause of his condition.
  • Screening dermatologists by phone to determine if they had alternative treatment options besides topical steroid creams and calling more than once to confirm before seeing an out of state dermatologist. 
  • Continuing care with an osteopathic doctor for craniosacral therapy in addition to our primary care physician.
  • Continuing care with a Licensed Clinical Professional Counselor for individual therapy.
  • Documenting every provider my child had seen, including upcoming appointments.
  • Printing resources on TSWS to have available to share and to keep in a binder with my child’s medical information. 

These resources on TSW Syndrome may be helpful for you to share with your doctor:

Press release from GOV.UK on steps towards TSW Syndrome awareness and prevention happening in the UK (Sep 2021)

National Eczema Society and British Association of Dermatologists joint position statement on Topical Steroid Withdrawal Syndrome (Jan 2021)

National Eczema Association (US) article, “TSW: What the Eczema Community Needs to Know Now” (Mar 2021)

ITSAN website “For Doctors” – works cited at end of page.

BBC Wales TSW article, “Topical steroid addiction: Patients call for more support” (Mar 2021) 

The suggestions above are examples of ways to feel more prepared and proactive when you are caring for your child’s intense health issues during TSWS. There are supportive doctors who will listen and learn if they are not familiar with TSWS.  I was able to share my concerns with providers who understood my child’s condition and their skill and support was healing for all of us. Stay hopeful and take time to take care of you.

By Jolene MacDonald

Do What Is Most Essential – Tips for TSW Parent Caregivers

Care for your heart, your mind, your spirit and your body in any way you can through this time.

Love your child. Keep loving them. Your love is the greatest gift you will ever give them during this journey.

Ask for help. You will not ever look back and say I wish I had done this myself.  Grow a loving and caring circle of support for your child.

Trust your instincts.  Ask questions. Work with supportive medical providers who you trust.  

Rest when you can.  Sometimes recovering from sleep deprivation starts with one quiet moment.  One minute outside in the sunshine.  Watching something that makes you laugh.

Write a mantra of things to say to your child when the hardest times come – during the middle of the night, when sleep deprived, during the terrible nerve pain and itch, blood on the sheets, endlessness feeling that is trust me going to pass. Put it on the wall.  Read it when you are not the version of yourself you want to be.  Write one for your child and one for you.  The pain will pass, the isolation will pass, the suffering will pass.

You will need help. Reach out to find a counselor.  Find support for your family.  Leave your house and know that your child will be okay.  Even if okay is had a really hard time with someone else there to help. Respite for you means wellness for future you, their caregiver and opportunities for growth as your child navigates dealing with pain with the support of others.

Check in with the quiet warriors in your house. Your children who are not going through a health condition.  Ask them how they are doing?  Tell them how proud you are of them.  These warriors are the ones who will help you hold onto normalcy and bring laughter into painful places.  They are the unsung heroes of TSW.  Give them your love through a ride in the car just you two to get a treat.  Being home with a sibling in TSW means they will exist in a waiting place, in anticipation of their sibling’s pain and suffering.  Help them by seeing them and hearing them, not for hours each day, but for moments of lightness and love.  You are already doing it.  

You give every day.  Take care of you.  Take back moments as your child heals to enjoy every wish one at a time.  

Help your child warrior feel heard and seen. Write down their symptoms and add new ones. Teach them how to share their pain and itch in new ways, like with a numbered pain scale where they can watch the numbers change over time. 

Distraction. Keep books and trivia cards nearby.  Ask unexpected questions while your child is dealing with nerve pain and itch.  Watch funny videos and let them play video games.  Let them sleep when they need to sleep.  Take them outside when you can and believe in the wisdom within our bodies that knows how to heal every day.

Understand that you will change.  You will come through this a core version of yourself.  You likely will have shed layers of identity and reformed into someone with a forever changed view of life and happiness. Consider the rest of your life a journey to heal, that time will bring you peace.  You will have visible and invisible wounds as a caregiver, like your warrior child and warrior family.  Your wounds will teach you more about life than anything. Be where you are.  You will get to where you want to be and it is okay to grieve and it is okay to not grieve.  Each day will bring you something new as your child heals.  Keep believing in every dream.  

Talk to friends and family you trust.  They will step forward for you.  There are some who can not and will not, but save your reserve for those who do.  Lean into your guides.  Let them hold you together on hard days and feel their love around you.  Keep going.  Someday you will look back and see how you grew stronger with each new day.  And someday your child’s health and strength will outpace your wildest dreams.

By Jolene MacDonald

jmacdonald@itsan.org

This post is dedicated to my daughter, Isla who taught me that being a Mom means you will make many mistakes and being a Mom means you will do everything you can to start over.  To recover the moments you missed and lost and wished for.  And you will.  Thank you for sharing your voice and being my girl.  Thank you for being indescribable unless there is a word for what is more than a miracle.

This post is inspired by my son Max’s strength of spirit, mind and body to come through the hardest condition I have ever known in my life.  We hold onto every single moment of health because of you.  We know that anything is possible because of you. You are my first miracle and your life has just begun.

This post is with love and thanks to Max and Isla’s dad, Jack.  We made it through as parents.  We parted ways as a couple but we will always be parents who love our kids with all our hearts.  

This post is because of the family and friends who were pushed far past their comfort zone during the hardest years of TSW and who leaned in.  For the healthcare providers who stood by us and believed in healing from within.  For the school and educational team that carried us through the hardest years with care and consideration for every challenge we faced.  This post is for you and your child and I am here sharing it because of ITSAN.

Topical Steroid Withdrawal Syndrome – Every Provider Will Know

It took six years to be ready to share the images below of my baby. My son. Why now? Almost six years after I stopped using topical steroid creams on his skin. Three years after he rebounded to oral and inhaled steroids while hospitalized for an acute respiratory issue. Why? Because my son is a recovery story to join the thousands of babies, kids, and adults who should never know this preventable condition. How can so many more, thousands of individuals and parent caregivers, still be suffering years later? Their stories posted in Topical Steroid Withdrawal support groups on Facebook and Reddit are not reaching mainstream medicine as the epidemic they represent.

If you know someone dealing with unexplainable, uncontrolled eczema and it worsens each time they attempt to cease or taper using topical steroid creams, they too may be dependent on the synthetic cortisol in the creams and be experiencing HPA axis suppression, increased allergic response, capillary dysfunction and more, due to the vasoconstriction and immunosuppressant effects of topical corticosteroids when not administered safely.

For more information: http://www.ITSAN.org.

March 2014  (4 yr 4 mo)  

Throughout the years that I followed instructions to treat my son Max’s rashes with topical steroid creams (originally just in creases/skin folds such as behind knees or inside elbows), as the rashes would improve and I would reduce the steroid creams as instructed by his pediatrician, his body would react with new rashes. At age four years, his rashes began to spread (pictured above), and I believed that the steroid creams were not helping and making his skin condition worse. I informed his pediatrician of this concern during an office visit in March 2014.  In May, I repeated my concern with the same pediatrician and she had an expression on her face that looked like anger.  She said “he has maxed out my scope of care.”  Max was 4 years 6 months old and had been prescribed topical steroid creams (used intermittently), for close to four and a half years.   

April 2014   (4 yr 5 mo)

Max stopped sleeping at night in mid April 2014, due to the discomfort of his rashes.  He was seen on a weekend at an urgent care facility and prescribed a 6 day course of an oral steroid.  The medicine only suppressed his rashes for a short time.  Seen above on his 5th day on the oral steroid.  

May 2014   (4 yr 6 mo)

At 15 days off the 6 day course of oral steroid, Max’s skin flared with rebound rashes. Max’s pediatrician recommended a 16 day dose (with taper), of an oral steroid.  Afterwards Max became highly reactive to multiple environmental allergens.  He could not walk across grass without tearing at his legs due to severe itch.   We couldn’t go in stores as he reacted to fragrance with terrible arm and leg itch.  An allergist tried to convince me to put Max on an immunosuppressant, I researched it and refused.  

June 2014   (4 yr 7 mo)

6/1 – Max stopped all topical steroid creams.  He developed Red Skin Syndrome as his skin had become addicted to the synthetic cortisol in the creams.  His blood vessels were no longer being suppressed by the creams and it is said by others in recovery that blood vessels can dilate up to 3x the normal size off the creams, causing terrible nerve pain and itch.  His back flared first with rashes and gradually healed. The skin on his knees turned gray and thick for weeks, resembling elephant skin.

November 2014   (5 yrs)

Max’s face flared with rashes, shedding and weeping skin for over 6 months.  He experienced ongoing nerve pain and itch. He saw medical providers weekly throughout his early years in TSW, and was treated with everything from compounded antihistamines, to supplements, vitamins, a compounded antibiotic, genetic testing, comprehensive lab work including allergy testing and more. Ultimately comfort measures from ice packs to sunlight, sleeping at whatever time of day was possible, and allowing the nonlinear progression of healing to lead the way brought recovery.

April – August 2015  (5 yr 5 mo)

Ongoing rashes body wide, nerve pain and itch.

February 2016  (6 yr 3 mo)

Ongoing rashes body wide.  Weeping skin.  Ongoing nerve pain and itch. Fourth picture is March 2016, less weepy.

March 2017  (7 yr 4 mo)

Ongoing rashes body wide.  Ongoing nerve pain and itch. Ongoing sleep and temperature dysregulation.

August 2017  (7 yr 9 mo)

Worsened, steroid induced red rashes.  In May 2017 Max developed a respiratory issue.  He was hospitalized and his treatment included a 3 day course of oral steroids and a 2 week course of a steroid inhaler. He developed side effects to both and by the second week could only tolerate a half a dose of the steroid inhaler.  Two days after stopping the steroid inhaler, at the time of day his body was used to it being administered, Max had a severe rebound with sudden neck swelling.  In the above pictures Max’s skin presents similar to medical photos of individuals experiencing a drug allergy. His skin may have been additionally irritated following a two week dose of a compounded thyroid hormone when a pediatric endocrinologist failed to recognize and support the signs of rebound to a steroid inhaler.

November 2018 (9 yr)

Stages of healing and flaring on back of calves.  Ongoing rashes, nerve pain and itch.

January – February 2019 (9 yr 2 mo)

Stages of healing and scabbing on back of calves. Max stopped wearing sneakers in gym this month to allow for wounds on his heels to develop and maintain scabs.

February 2020 (10 yr 3 mo)

Max still has areas of healing on his calves that are slower to heal as they are impacted by the joys of running and playing sports. He has almost no itch or nerve pain during the day. He sleeps more deeply at night than before but still experiences nerve pain and itch as the last areas of skin recover. Topical Steroid Withdrawal Syndrome, a result of ineffective and mismanaged topical steroid cream treatment, worsens the original health issue at a magnitude of suffering and pain greater than can ever be explained in pictures or words. Every provider will know this condition one day and the standard of care will shift to reflect individualized treatment that does not suppress the body’s immune system or the underlying condition. Share our story and be part of stopping this preventable condition known as Topical Steroid Addiction, Topical Steroid Withdrawal and Red Skin Syndrome.

Every. Provider. Will. Know.

By Jolene MacDonald

jmacdonald@itsan.org

Finding Your Path ~ Back to School for TSW Warriors

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Finding Your Path ~ Back to School for TSW Warrior

Back to school in Topical Steroid Withdrawal can be so much better when you know that you will be understood, you will be safe, you will find support when you need it and opportunities to learn and grow in new and brave ways. I mean this for your child in TSW. I mean this for you.  Whether it is your first back to school in TSW, or if it is like ours, your fifth, each warrior is on their own unique path towards healing and thriving. Wherever you are as back to school approaches this year, or if you have already started, know that it is ok to be different as you identify your strengths, and advocate for your health and learning needs.  

Five years ago, when my son Max was 15 months TSW, and about to start Kindergarten, I so wanted him to be part of the familiar path his classmates would be on. I didn’t know up to the start of school, if he should be home-schooled or not, with the intensity of his TSW symptoms.  His school team was incredible but his first day was heartbreaking. The severity of the nerve and itch episode hurt emotionally and physically. Max was only able to attend Kindergarten in the afternoons due to exhaustion and pain from skin setbacks after scratching arms and legs at school. I was called into the nurse’s office each day (a plan we were grateful to have with the school though it meant deep stretching on one income), and Max would come home after the nerve pain and itch episode to sleep and recover. It was our attempt to stay on the same path as others, but it wasn’t the right route for us then.

We took Max out of school in January 2016, and kept him home to rest and heal. He spent months on the couch. Anything that dilated his blood vessels (fatigue, heat, stress, digestion, fragrance), would trigger nerve pain and itch. Those different, not school days, allowed his healing needs to lead the way. He could sleep in after a night of being up. We could bundle up on a good afternoon and drive to the beach to explore rocks. The right path meant trusting that what felt like loss would lead to gain. Max attended first grade full time. I was on call for the intense and almost daily nerve pain and itch episodes, but he would return to class afterwards. Each school year brought more healing and learning. Max will soon start his fourth grade year and he loves school. We have seen so many gains each new school year and will share how we planned and persevered! 

The Planning – Know Your Rights

Section 504 of the Rehabilitation Act of 1973 is an important legal right for your child. Section 504 requires that public K-12 schools provide a free appropriate education (FAPE), to students who qualify due to a physical or mental impairment. If your child attends a school that receives federal funding they have the right to reasonable accommodations developed between the school, student and family in the form of a 504 plan. Meeting and speaking with your child’s educational team can feel overwhelming at first. Each year I try to prepare a written summary prior to the meeting. Having notes helps keep me on track during meetings when I have been nervous, exhausted, or felt emotional to review our health journey with new team members.

  • Reach out to your school’s guidance counselor and/or IEP coordinator with a request in writing to meet with your child’s teacher, school nurse and principal. Explain that you would like your child to be evaluated under Section 504.  
  • Consider reaching out 1-2 weeks before the start of each new school year.
  • Prepare a written summary of your child’s health history, include current health issues: how are days and nights?
  • Bring a copy of office notes and records from recent medical appointments if you feel that they appropriately represent your child’s health condition.
  • Print information related to TSW to share with the team. (ITSAN.org)
  • Bring photos of your child in the beginning stages of TSW and the most recent photos of areas where healing is still occurring. 
  • Include your child in the process before the meeting by asking for their thoughts about going back to school and documenting their response.
  • Develop a draft of accommodations you anticipate your child might need. (See below for examples).
  • Consider and document your child’s strengths and your hopes for this school year.  
  • Keep breathing – it will be ok!

Additional thoughts: My son Max has many food, environmental and drug allergies so I request the meeting each year to develop his Health Plan and because TSW has been an ongoing physical health condition I also request a 504 Plan to develop classroom accommodations to support his specific physical needs. In the past I have brought a laptop computer to share pictures of Max. It is important to me that his team has a visual for areas still healing, such as his calves and feet, as the school nurse may be the only school provider to see these healing areas during the school year.

The 504 Plan Meeting – Getting to Know Your Warrior

Remember that you are likely not the first family your school has worked with dealing with a unique health issue. Great educators are open to learning and taking on new challenges in order to expand their skills and understanding. Your child’s educational team is there to help support you all in finding ways for your child to be successful in school.

  • Thank your child’s team for the opportunity to meet.
  • Inform the team that you have brought information to share about your child’s medical condition. Share a few words about your child’s strengths. Summarize your child’s health history and current health needs. Share photos of healing areas that may impact your child during the school day. Provide information about TSW. Share a copy of or read the thoughts and/or concerns your child has expressed about the school year.    
  • Discuss accommodations that may support your child accessing their education as they heal. For example, attending a partial school day if they are in need of additional time to rest/sleep/heal. Permission to wear comfy footwear for gym. Parent supplying cotton sheets to be used on the cot in the nurse’s office during a nerve pain and itch episode.    
  • Ask any questions including: What is the daily schedule? How many transitions do students have between classrooms and the building on a typical day? Discuss transportation planning including field trips.

Federal funds do not cover accommodations determined during a 504 Plan. Schools are required to cover the costs of reasonable accommodations through their own funds. Students and families are not required to cover the costs but being open to collaborating has been effective in our experience. We have donated a fan and provided supplies specific to Max’s needs when he has been in the nurse’s office. The school has provided a classroom with air conditioning when there was need and has offered a portable AC unit. Ongoing communication and planning with school providers has been excellent. The school went fragrance free in 2015 and it made such a difference.

Each year Max’s educational team has helped develop a 504 plan that reflects his current health needs. For example, his school nurse summarized: “Health Concern: Topical Steroid Withdrawal (TSW): causes skin to be red, burning, painful, intense itching, rashes, swelling and flaking skin.  Thermoregulation altered. Fatigue and Insomnia. Accommodation/Intervention: When student is having an episode related to his TSW, he will have intense itching, pain and burning. Triggers may be emotional upset and physical activity at recess or PE, and feeling too hot or too cold.  Student will stop activity as needed and will be allowed to take a break in a cooler space such as the RN office. Student will have liberal access to the nurse’s bathroom. Student may eat lunch in a quiet space, such as the RN office as needed. Sitting on the carpet can be difficult for student because of dust mite allergy and pain related to skin integrity. Student will have a chair in the classroom when needed. Student’s parent will be called during an episode, based on intensity and RN assessment, to assist student at school as needed or to take student home if appropriate.”

The school included a Safe Scratch Plan with language to replace, “Don’t scratch” or “Don’t itch” with encouragement like “Gentle rubs.”  “This will get better.”  “You are doing great.”  “Let’s think about the next fun thing we are going to do.” The school nurse included a chart in Max’s Healthcare Plan to differentiate level of need and level of response between a “Mild episode of pruritus (itching) related to TSW” and a “Severe episode of pruritus.” Every team member including substitute teachers received a copy of the 504/Health plan and it became the “blueprint” for our path.

You will find your path and you will persevere!

Back to School Words From Max (age 9) – To Your TSW Warrior

Max: Remember everything’s going to be ok. If you’re nervous, take a moment and then start. Focusing on a good thing and if you’re worrying about something, like that already happened or that’s coming, you can focus on what’s happening now. Deep breaths. And sometimes when I’m at recess I do yoga stretches. When you’re dealing with the itches you can just think helpful thoughts, maybe pull back for a sec, take a deep breath, maybe use the bathroom, try to lighten your itch, feel like a cloud, cause clouds are too fluffy to hurt themselves.

Me: What has improved since you started your first back to school in TSW?

Max: Whoa, I don’t break my skin. I don’t need to put Vaseline on before going into the tub.  I used to itch really hard and start to bleed but now I barely itch at all and I barely break a scab.

Me: How has going back to school been during TSW?

Max: Well, I mean I have to thank it to my classmates, they’re so helpful with their understanding…in Kindergarten someone would always walk me down (to the nurse’s office), ask me if I was ok, everybody would ask the teacher if they could walk me down, they always wanted to…that was sort of funny. Now I can go down (to the nurse’s office) independently.  Normally – put pressure and walk, sometimes run if it really itches, but I always slow down and take a deep breath so that my body doesn’t go too hyper and make everything more itchy than it is supposed to be.

Me: What has been helpful that your teachers have done?

Max: My teachers…if it is my arms they’d give me pressure and they’d tell me I could go down (to the nurse’s office) if I was itchy. They’d always be aware of what I was doing, like if I was beginning to get itchy, I would raise my hand, the teacher would look at me and point to the door.  Itchy permission slip.

Me: What has been helpful from your nurse?

Max: My nurse is always…I’d ask for a washcloth and he’d always make it cold, that’s how I like my washcloths. He’d always tell me about something recent in science that I can listen to or a cool discovery that NASA has achieved or even some flashcards.  I even got to see a trailer of a movie once.

Me: What has been helpful from your guidance counselor?

Max: She always says have a good day. She is cheerful.

Me: What has been helpful from your specials teachers?

Max: They always say I can go get a drink of water or go down to the nurse’s office. My gym teacher will always give me a positive answer and say I can go down to the nurse’s office and if I come back before the special ends he’s always happy.

Me: What has been helpful from your principal?

Max: My principal always understands what’s happening, she always waves and smiles. She gives me a thumbs up when I come out after itches. And every morning if I walk past her she’ll always wave and say, “Have a good day.” And when I tell her I haven’t had any itches all day she jumps and does a little Wooo-hooo!”

Me: Last words of advice for kids going back to school for the FIRST time in TSW?

Max: Never think about something bad, always think positive.

By Jolene MacDonald

Illustration by Max Duffy    

Sources:

Francoeur, Esq, Laurel. How to Advocate for your Food Allergic Child

Jacqueline, Ilana. Surviving and Thriving with an Invisible Chronic Illness

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 Addiction 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.  

By Jolene MacDonald
jmacdonald@itsan.org