Topical steroid withdrawal (TSW) is a wild journey. Before we began GAPS we were going about dealing with Raleigh’s severe eczema in the typical Western medicine way: cortico-steroids on the skin, bleach baths, and wet wrapping. We even attended a week-long program at National Jewish here in Denver, Colorado to help us learn how to care for his skin. It was there that I was told he would always have severe eczema and we just needed to learn how to deal with it.
I was never told anything other than how to apply these steroids to his skin. I wasn’t told that if we decided to stop them he would go into a horrible withdrawal that would cause multiple skin reactions. At one point I asked what these steroids were doing to his body – I was reading the inserts – and had one doctor look me in the eyes and say, “as long as you’re only putting them on the eczema they are not being absorbed into the skin.”
Unreal.
I knew in my gut that these steroids were making him sicker. In fact, he developed asthma after being on them for a length of time. I was even warned that that may happen. Western medicine was failing us and my son was withering away before my eyes. I knew I had to make a change.
That change was GAPS and I knew God had led us there.
So when we began, without knowing what I know now about TSW, I pulled all the steroids. I stopped them cold turkey on Day 1. I do not know how advisable that choice would have been from a medical professional, however. ***This is not medical advice***
My days leading up to GAPS were full of slathering these steroid creams all over Raleigh’s body and then wrapping him literally from head to toe.
His legs and arms, and sometimes torso, were all completely wrapped under his clothes. I was asked often if he was a burn victim.
Within the first few weeks of stopping these steroids, combined with the gut-healing GAPS foods, Raleigh began to shed dead skin. He would wake up in the morning, irritated because he felt horrible, and I would slowly remove all of the wet wraps that were now dry. Sometimes the gauze would catch and stick to cuts that were attempting to heal. His skin would be a bright, angry red and dead skin would be everywhere. It was not an ideal way to begin the day. At the time we had a dark brown couch and I would brush off the dead skin and it would look like snow on the couch.
I didn’t know what he was going through was TSW until a few years later when I happened upon people in the eczema community describing their journey getting off of these horrible steroids. I just thought it was part of detoxing with eczema in the early stages of GAPS.
When I reflect back on Raleigh’s journey in that first year on GAPS I’m almost thankful for some of the missing pieces of knowledge. God in His graciousness sustained me through those trying first days, weeks and months. All I knew was I had to keep going. I didn’t question the process or what I was seeing. I had to trust that I had been led to this place and needed to be faithful to the task set before me.
After a couple of months of this TSW shedding Raleigh’s skin began to change. The redness faded and eventually we could see his natural skin color. We did not know, up to that point, that he had olive tones to his fair skin. And as we moved further into the first year of GAPS these sheddings lessened. We did see one or two more happen before the first year was over and each time his skin cleared significantly.
I ended up following a couple of people’s TSW journeys on Instagram once I realized Raleigh had experienced the same thing. Raleigh had only used steroid creams for about two years. The stories I was following were of adults who had used them for multiple years or decades. Their stories broke my heart. I was thankful for the mercy in finding this out when I did so that I could help Raleigh before he had years of steroid use building in his body.
I believe Raleigh’s healing in the first year on the GAPS diet was slower due to the topical steroid withdrawal. His body needed to get rid of those toxins before it could even being to work on healing the eczema. The detox was difficult but important to the healing process. This is where trusting the process is important. The body in its innate wisdom knows what needs to be healed first and it seeks to do just that.
There needs to be more true informed consent with these sorts of medications. I wish these doctors would have spent the time to tell me just how serious these steroids were and what it might look like if we ever decided to stop using them.
The last few months leading up to beginning GAPS was my rock-bottom. Raleigh was in the worst shape I had seen him. Our nighttime routine was long and arduous when we were having to slather him with these steroid creams and then wet wrap him before bed. The entire process took close to 30 minutes. The exhaustion was so intense physically but also mentally and emotionally as I began to read the inserts and worry over what damage they were doing to his small body just to give him a short relief from the eczema. I would cry many nights as I slathered steroid creams all over his body.
That part of the journey was an important part. I was learning to trust my intuition as a mother. I was questioning many things. I was fighting for my child. I gave nearly a decade of my life to figuring out how to regain Raleigh’s health. I had my very own Hero’s journey in the process. I look at him now and I’m so thankful I never gave up. Your health, your child’s health, is always a battle worth fighting.
TSW is a very real and difficult thing. If you are going through it I would encourage you to seek the help of a qualified nautropath or Practitioner to help you navigate.