TSW (Topical Steroid Withdrawal) at Eli the Great: Topical Steroid Withdrawal

TSW (Topical Steroid Withdrawal) no comments

Posted at 9:28 pm in General

I am not a writer, just a mom who wants to share our experience with TSW. If we can help at least one other person then it was worth it. Here is our story.

At 6 months old we took Eli to Children’s Hospital in Waltham Ma because of his eczema. We met with Dr Gellis who is a pediatric dermatologist. He explained to us that Eli had the most severe form of Nummular eczema, it shows as coin shaped chapped skin. He told us that topical steroids were our only choice in clearing Eli’s skin. He recommended that we use it twice daily to all affected areas. I voiced my opinion that I didn’t want to put it on his face and asked if it had any long term side effects. We were told more than once that there were no long term effects and it was our discretion to use or not to use it on his face. He also suggested Balnetar baths once a week until his skin cleared. We did just as the doctor told us and continued when needed for the next 24 months. Eli is now 2 1/2 years old. We have not used topical steroids as of January 1, 2014.

Recently my friend Pam shared with me her son Ryan’s story of TSW. I had never heard of it before, the pain and suffering that her son is going through made me cry. That afternoon we decided to stop topical steriods with Eli. We have just started week 5 of Eli’s withdrawal. He looks like he has second degree burns all over his body – thank God we never put the steriods on his face. Sleep is very erratic, he would wake up as soon as the Benadryl wore off. (Eli had a reaction to liquid Zyrtec so we are now crushing pill form) Nik would sleep with Eli in his room and tried to comfort him, many nights with no luck. He would still be asleep some nights clawing at his skin and whimpering. As a parent you want to always be able to comfort your child, it has been heartbreaking to watch helplessly as Eli struggles.

We started using Maya’s Wound Repair which is all natural and made by a mom in California out of her home. So far it has helped ease Eli’s pain and discomfort. We have an appointment to see a Naturopath next Wednesday. We are hoping to get some advice on E’s diet that might help. Eli has been such a trooper through this ordeal, we are ready for the long road to recovery. We will win the battle. We want to spread awareness so others won’t have to suffer the withdrawal.

Click here ITSAN.org for more info on Topical Steroid Withdrawal

Maya’s Eczema Products can be found on Facebook