Do What is Most Essential – Tips for TSW Parent Caregivers
“My top tip is go into therapy and know that you will need it. I think from the very beginning, if you’re in a couple, couples therapy. Get therapy even for your child if they’re going through this, or for yourself…expect that this would be kind of a traumatizing journey you’ll have to work through, and please get help.”
-Kathryn Tullos, ITSAN President/CEO
Care for your heart, your mind, your spirit and your body in any way you can through this time. (See a list of resources below.)
Love your child. Keep loving them. Your love is the greatest gift you will give them during this journey.
You will need help. Reach out to find a counselor. Reach out to find supportive medical providers. Take breaks. 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.
Ask for help with groceries. Ask for help with anything and everything. You will not look back and wish you didn’t ask. You will look back at how you grew a safe, caring circle of support for your child and you during TSW. Connect with e-pals. Give your child an email address and ask friends and family to send them messages, riddles, and educational videos. Coordinate video game meetups with friends depending on age.
Share your library card and ask a friend or family member to surprise you with books for your child. Ask someone to read to your child, even if they are itchy, to help provide a distraction, in person or remote. Ask for support from your child’s school team. A school guidance counselor once encouraged a young TSW warrior who feared entering his classroom, with a mantra from Muhammad Ali, “I am the greatest, I said that even before I knew I was.”
Trust your instincts. Ask questions. Caregivers of children going through Topical Steroid Withdrawal Syndrome have reported a set of challenges unheard of when it comes to most any other health condition. When horrific symptoms develop from a treatment – topical corticosteroids used as prescribed, that a parent caregiver believed was safe, trust is broken.
When a medical provider is unable to recognize that the treatment for a child’s eczema has worsened their condition resulting in TSW Syndrome and threatens to report a parent to child protective services if they do not comply with using topical steroids on their child, despite parent’s documentation that topical steroids are not treating and/or now worsening their child’s health, trust is broken.
When your child’s healing is not linear, trust the gains that continue, despite setbacks. Photograph the changes. Keep a journal. Ask your child to help share their symptoms. 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 will 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.
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.
Be gentle on yourself. Every day your love, your strength and your instincts champion your child’s recovery. Returning to health and balance comes with continuing to identify what your child needs, including supportive medical providers, understanding school providers, family and friends who rise to the opportunity to learn about Topical Steroid Withdrawal Syndrome and to stand with you. Believe in your child’s potential to heal and believe in yourself. Taking care of you – their parent, their caregiver, their hero – supports physical and emotional healing for the entire family.
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, Parent Caregiver Advocate
ITSAN Executive Assistant
Mental Health Support During TSW:
TSW affects the mental health of everyone in the family and accessing virtual or in person therapy is an important step. Find mental health professionals in the U.S. (including those who offer telemedicine) here. If outside the U.S. please reach out to find a mental health provider near you. Find one worldwide option here.
If you are in crisis: In the U.S. call the Suicide and Crisis Lifeline at 1-800-273-TALK (8255), or call, text or chat 988. If outside the U.S. please reach out to a trained and caring crisis support provider near you. Find a list of suicide crisis lines in many countries worldwide here. You are not alone and you deserve to feel better.
Medical Support During TSW:
ITSAN maintains a list of member recommended TSW Syndrome supportive doctors in the Files section of ITSAN’s Facebook support group with 18K members here.
Learn tips for advocating for appropriate medical care for your child during TSW including resources to share with your doctor here.
TSW Support For Parent Caregivers:
Find mental health support, member recommended TSW supportive doctors, medical resources to share with your child’s doctor, TSW support groups and more here.
Coping With TSW At Home:
TSW Assist provides crowdsourced recommendations for managing TSW, provided by the community for the community here. TSW Assist does not provide medical advice and recognizes that every healing journey is different.
Coping With TSW At School:
Learn how to advocate for your child’s TSW needs at school and how to request a 504 plan meeting here.
Ways to Advocate:
Report to the FDA: Advocate for the safety of others. You can report adverse drug reactions or side effects to the FDA (The United States Food and Drug Administration) from anywhere in the world. If outside the US, please also report to your country’s equivalent to the FDA. Use the term “TSW” or “TSW Syndrome” when you report to the FDA. Report here.
Share your story. Sharing your story can help prevent TSW and offer hope to others. Connect with ITSAN – share your story here.