My Son's Journey (Part 2)
Eli was always a great sleeper. We knew that once we stopped the topical steroids that this might change, but we had no idea just how drastic it would be. Soon after we stopped the steroids, we noticed that Eli would fidget, squirm and wake up crying almost every night. We would have to go in and settle him down, which could take anywhere from 30 minutes to 2 hours. He was sluggish during the day and didn't have much energy.
His poor little body was covered in eczema. We only went outside at night because the sun was too much for Eli to handle. Every night after dinner when we would go for a walk around the neighborhood, Eli would be in his one-piece cotton pajamas. We had to keep his body covered because he was constantly scratching his skin. The only time he would get relief was in the bath. We would fill it with lukewarm water, a handful of Dead Sea salt (bought on Amazon in a 10 lb. bag) and tea tree oil to help prevent infection.
Eli's after-bath routine took about 30 minutes. Thankfully, my friend Pam knew what worked best for her son, Ryan, and passed all of her knowledge along to us. She put me in touch with her friend Stephanie, who has an Etsy shop (https://www.etsy.com/shop/TheHomeApothecary) where we ordered Zinc balm and Lemongrass balm. This was an absolute lifesaver. We used the zinc daily on Eli's face. Stephanie's son, Isaiah, had also gone through Topical Steroid Withdrawal. In the TSW world, anyone going through withdrawal is known as a "Warrior". Eli, Ryan & Isaiah are just that.
After-bath routine:
Cover head-to-toe in Hydrolatum cream (available at CVS through the pharmacy or Amazon)
Wrap arms and legs in Unna Boot wraps, which is gauze soaked in zinc and packaged in a foiled pouch (Amazon)
Put a sock in warm water, wring it out and place over the wraps, Then, put a dry sock over the wet sock (both arms & legs)
Cotton pajamas with mitts that were two separate pieces (the bottoms were like overalls that buttoned at the shoulders)
As the withdrawal progressed, the nights became unbearable. We had ordered special cotton pajamas (eczemaclothing.com) with mitts so Eli couldn't scratch the skin off of his face during the night. My husband Nik and I took turns staying awake to watch Eli sleep so if he started rubbing his face, we could stop him. One of us would go to bed at 11pm and set the alarm for 3am and switch so we each got a few hours of sleep per night. This went on for 2 years. We were sleep-deprived and felt defeated. I cried, a lot. Watching your child struggle is the most heartbreaking thing a parent can go through. We were living in a nightmare and there didn't seem to be an end in sight.
We went for a return visit to the local allergist. I went into the office with the doctor to update him on Eli by myself, as I knew Eli wouldn't be able to sit still with his skin the way it was. Once I was done, the doctor asked if Nik could bring Eli in. The second he saw Eli's face, he started yelling at me. The office door was open to the waiting room so not only did he yell at me, the entire waiting room heard him. I had tears streaming down my face and the last thing he said to me was, "If you were a good mother, you never would have let this happen." I told Nik to take Eli home as I went into the allergy testing room with our younger son, Kyle. I was still crying when the nurse came in and apologized for the doctor. While I was waiting for testing results, the doctor came in and apologized. I sat there as he spoke with glazed eyes. When he was done talking I looked up at him and said, "You're fired".
On the ride home, I called Children's Hospital in Boston and set up an appointment for Eli. We walked in there and told the doctor he was not allowed to ask us to put steroids on our child. We agreed to bring Eli back monthly to get checked and if he didn't see improvements, we would try something new. Within a month, Eli's skin began to clear; every day it was better and better. We were hopeful that all of the hard work was finally paying off. It took two full years for Eli to be healed and I am proud to say that he does not have one scar on his body from the withdrawal. Every now and then, he will have a flare up and we still use the same routine to clear his skin. I have since helped other families who are struggling with eczema and have passed on my knowledge, as my friend Pam did for me. She was my lifeline and I am forever grateful for her support and friendship.
I have to say, if it were not for my husband, I would never had made it through those 2 years. I am lucky to have a partner that kept me laughing, let me cry and reminded me that I was a good mother when I felt like I was failing. This is the hardest thing we've ever gone through and we are stronger because of it.
This picture was taken this past weekend. Eli has beautiful, porcelain skin and still always has an infectious smile on his face.
TSW isn't widely known in the medical community but is slowly starting to get more recognition. We were told by more than one doctor that if we wanted to heal our son, we would have to use topical steroids. We knew that wasn't true, so we needed to find a doctor who would listen. I can't stress enough how important it is to be able to trust your doctors and remember, they work for you. Trust your parental instincts and never give up fighting for what is best for you and your family. There are countless "Warriors" worldwide going through Topical Steroid Withdrawal today. I know the journey is not easy, but it is worth the fight. My positive thoughts are with them always.
If you know someone who is struggling with eczema, the ITSAN (itsan.org) website is a great resource. You can also reach out to me if you would like more information.