Bo's first eczema appeared when he was only four months old. At the onset the pediatrician asked us to watch it and treat his skin with moisturizers. After two months of unsuccessful treatment, the pediatrician prescribed a low potency steroid cream. Upon using the cream, the rash continued to spread and worsen. The pediatrician referred us to a dermatologist when Bo was about a year old. The dermatologist continued to treat the eczema with steroid creams. By the age of 14 months, Bo was on numerous medications. The treatment continued for about six months eventually leading to the dermatologist asking us to seek a pediatric specialist. He stated that our case was more than simple eczema and required more specialized attention.
I would never wish this journey on anyone, especially this sweet baby!
See the tiny spot on eczema on his left cheek? That is what started this all!
We also saw several allergist seeking a cause for the eczema. At about 9 months, Bo was found to be allergic to soy via a blood test. We eliminated all soy products from his diet, but his eczema continued to rage out of control. At about 14 months old, he was tested for allergies by subcutaneous prick tests and live food test. He did not show an allergy to any food or environmental trigger. Even with these results, we did a complete food elimination diet with the support of an allergist and nutritionist.
First birthday party. We coated him head to toe with steroid creams the night before so that he would look good for his party. :(
Notice the red spots in his eyebrows and cheeks. That was the beginning of the stubborn "eczema".
At the age of 18 months we visited a pediatric dermatologist. Bo's skin was particularly inflamed when we visited. The Pediatric dermatologist prescribed oral steroids to clear his skin. Within a week he had perfectly clear, smooth skin. I felt like the pediatric dermatologist was a miracle worker, until...
This was taken in the pediatric Dermatologist's office
This was 3 days later on oral prednisone.
With the prescription of oral steroids, the doctor warned us that rebound would most likely happen. He encouraged us to increase the frequency and amount of topical steroids as we decreased the oral steroids. He also prescribed a tapering dose of oral medication. Throughout the next 6 months we were on a continual cycle of oral steroids, strong topical steroids, and horrendous flares. His skin was continually declining, as was his overall health.
Bo's medication list for the first two years of his life.
During this time, he maintained his weight, even though his was at an age where growth would be expected. I vividly remember his weight was 27 pounds. He maintained that weight from 18 months to 3 years old. During the 18 months on steroids and 18 months of Topical Steroid Withdrawal, Bo's height dropped from the 75th percentile to the 6th percentile.
Near his second birthday, I knew that something more than "eczema" was going on with Bo. He began to get other complications, like thinning hair, skin thinning, and fungal infections. He was being prescribed medication to sleep, fungal infections, and itching. I knew that his health was declining and felt we needed to take a different course.
The pediatric derm told us to moisturize using Crisco cooking shortening. Proof we tried EVERYTHING!
Bo's second birthday party. He had just had a full body application of Fluocinolone Oil and Elidel on his face.
Throughout this process, I read medical journals, looked at articles and communicated with our pediatrician. Our pediatrician also felt that this was a complicated situation that was beyond "eczema". Because of that, he ordered a series of tests including Celiac Panel, IEg readings, vitamin and mineral panels. Overall, the tests were normal. The IEg readings were high, but not high enough to indicate an immune disorder.
One day, in a desperate search, I search "severe facial rash". A blog about a little boy’s journey was in the results. I read the supporting documentation and watched the YouTube videos about Topical Steroid Withdrawal. I knew instantly that Bo had been over medicated and his body was addicted to the medication. I immediately took the information to my pediatrician. He looked into the process and agreed that we had exhausted all traditional treatment measures for eczema. He agreed to consult with an expert doctor and support us through the process.
This was while on steroids! As far as I know, this is the last picture of Bo on steroids.
The first 16 months of withdrawal were pure hell. Bo had many symptoms including burning, itching, oozing skin, temperature regulation issues, shaking, nerve pain, insomnia, and overall discomfort. We maintained close communication with an expert on the condition throughout the first nine months and our pediatrician the entire time.
Bo's third birthday. One year withdrawal.
Potty training during withdrawal.
No face painting, only a hand. 14 months withdrawal
To date, Bo has been off steroids for 25 months. He had a huge breakthrough around month 16. His skin began to clear, stopped oozing, stopped shaking and he began sleeping most of the night. In months 16-20 he has begun to grow! We were on a long waiting period to see and endocrinologist. She ran several blood tests and everything came back normal! He grew 1.5 inches in 4 months. He feels and acts like a normal 4 year old.
20 months withdrawal
While on steroids, he was not healthy. His skin was broken out all over his face and his knees and feet were thinned from the medication. While on oral steroids, he experienced behavior changes and was often lethargic when he was tapered off. We were headed down a scary path, I'm afraid. I can honestly say, the 16 months of hell were worth the healthy child I now have. I do not consider him 100% healed, as he still has an eczema like rash in some areas particularly on his ankles and elbows. However, his overall life quality is 100%. We are able to schedule life activities without his skin being the number one concern.
I know TSW may not be for everyone. It was right for my family because our goal was overall health. I know using steroids long-term is against the FDA recommendations and the medication was not tested or approved for the way it was used in our case. We saw behavioral and growth changes that were beginning to take a long-term effect on Bo's life. TSW is a family commitment. We spent thousands of dollars seeking the help of doctors prior to and during TSW. Once we decided to endure TSW my husband changed jobs so he would not have to travel out of town. I sacrificed promotions at my job. Our daytime caregiver agreed to help so that we could both work full-time. We took turns sleeping with Bo to give him care throughout the night. Overall, our entire family committed to caring for him. The sacrifice was steep, but the reward is a healthy, happy child who no longer has to suffer.
Bo's 4th birthday- 2 years steroid free- Hooray!
Please seek medical care if you are considering TSW. Endocrinologists seem to be the most informed about the side-effects of topical steroids.
