Caregivers – Appropriate Care Roadmap
Supporting and Protecting Your Family: Your Right to Access Appropriate Medical Care For Your Child During TSWS
ITSAN 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. 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 us at: firstname.lastname@example.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.
Again, ITSAN does not diagnose or recommend treatment or medication.
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”
“What Every NP Should Know About TSW” by ITSAN President Kathryn Tullos, RN, published in NP Student Magazine. (Oct 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
Updated Nov 2, 2021