COLTON’S TOPICAL STEROID WITHDRAWAL RECOVERY
Christin shares her son Colton’s experience going through Topical Steroid Withdrawal Syndrome and how he is doing today.
Top row (left to right): 1 mo TSW, 2 mo TSW, 3 mo TSW
Middle row: 4 mo TSW, 4.5 mo TSW, 6 mo TSW
Bottom row: 7 mo TSW, 8 mo TSW, 9.5 mo TSW
How did you discover what Colton was going through?
Lots of internet research, eczema baby Facebook groups, Google searches. I found TSA (Topical Steroid Addiction) Facebook groups and discovered that is exactly what was happening to us.
How long did he use topical steroids?
On and off from the time he was 1.5 months old. We started the Aron Regimen when he was 2 years old and used the AR compound daily for 1.5 years, no breaks. All in all, he used steroids for about 3.5 years on and off.
What steroids did he use?
Topical: Hydrocortisone 1%, Hydrocortisone 2.5%, Triamcinolone, Mometasone, Fluocinolone, Cloderm, Betamethasone
Oral: Prednisolone
Inhaler: Flovent
Nasal spray: Flonase
Left to right:
1. September 2017- Colton’s first topical steroid was at 1.5 months old. At 5 months old his skin was kept under control with hydrocortisone (seen next to him).
2. September 2017 – “Eczema” spots while on topical steroids.
3. August 2018 – He was flaring very badly on the face every time we stopped steroids.
18 months old and 16 months on topical steroids.
Why did he start using topical steroids?
Minor eczema flares as an infant. A couple spots on his back and belly, only small patches.
Why did he stop using topical steroids?
I felt like they had stopped working, we had to keep increasing the potency. We could not stop applying steroids even for a day, or he would instantly flare. I realized he was addicted. His AR doctor wanted to increase his steroid to clobetasol, and I refused. I knew something was wrong and I would not put my 3 year old son onto this extremely potent steroid. I made the decision to stop all steroids completely.
Left to right:
1. January 2019 – Throughout, Colton is given multiple topical steroids by doctors to manage his skin. 20 months old and 19+ months on steroids.
2. February 2019 – “On & off steroids” (Hydrocortisone OTC, 2.5%Triamcinolone and Derma-Smoothe)
3. April 2019 – During his steroid use he experienced symptoms of ‘Atopic March’
developing multiple food allergies and asthma. (RX: Flovent & Flonase steroid nose spray.)
Left to right:
1. May 2019 – After a round of oral steroids.
2. May 2019 – Still flaring on & off steroids.
3. End of May 2019 – The Aron Regimen – perfectly clear, I thought we found our miracle.
Left to right:
1. June 2019 – On the Aron Regimen, Colton is given a compound of Betamethasone (steroid) and Mupirocin (antibiotic) multiple times a day.
2. February 2020 – Lesions begin to appear.
3. August 2020 – The lesions were extremely itchy…he would dig nonstop until they bled. They could not heal. Our doctor told us to apply straight steroid in addition to the compound. He was never concerned to get the lesions swabbed or anything. They never went away until we stopped steroids.
When did he stop using topical steroids?
September 2020
Left to right:
1. September 12, 2020 – After 1.5 years of daily use of the Aron Regimen – I make the call to stop steroids.
2. October 2020 – 1 month off steroids. It gets worse before it gets better.
3. November 2020 – 2 months TSW. Our doctors did not accept our concerns. They kept thinking steroids and antibiotics, thinking he had infections.
What were the worst TSW symptoms he experienced?
All of his symptoms have been horrible, but the worst was the ooze on his face. His face was completely raw and oozing. It poured ooze all day and night. His clothes, pillows and sheets were covered in ooze and blood. He couldn’t sleep, and would rub his face all night. If we tried to apply zinc cream or lotion, it would just drip off. Nothing could stop the ooze.
Left to right:
1. January 2021 – 4 months TSW. We have basically avoided our doctors for fear of CPS involvement.
2. January 2021 – 4 months TSW. We can’t go anywhere or do anything without thinking about the itch attacks that are bound to happen, the stares and judgement we will get from strangers.
3. March 2021 – 6 months TSW. Our life revolves around TSW…we get close to no sleep. My marriage is put on the back burner…It is absolutely the worst thing we have ever been through and I can’t believe how our doctors failed us.
What treatments has he tried? What worked/what didn’t work?
We have tried almost everything. Firstly, we sought care from Dr. Rapaport. He has been a great ally and we can’t thank him enough for all his help and support. Under his recommendation, we used Burow’s solution for the ooze on Colton’s face. This was the best treatment for his ooze and helped to dry it up and calm it down.
We have used hydroxyzine for the itch, which has helped him sleep and make it through the day. We have used naturopathy and homeopathy. We have had a great experience with Tracy White Homeopathy and her steroid detox remedies. We have also started seeing a chiropractor. I’m not sure if that helped his skin or not, but regular adjustments have been great for us. Topically, we use lemongrass balm and zinc balm from the Home Herbalist on Etsy. We also use Inner Balance sodium bicarbonate in the bath.
Left to right:
1. April 2021 – 7 months TSW. As a small business owner, I frequently shut down my shop to help Colton through his withdrawal.
2. May 2021 – 8 months TSW.
3. July 2021 – 9.5 months TSW
How long was his withdrawal from topical steroids?
We are 14 months steroid free, still not fully healed.
Have you seen improvement in Colton’s atopic march symptoms and if so can you describe the improvement?
Colton’s asthma is completely gone. We do not use a steroid inhaler or his rescue inhaler at all any more! We were using the steroid inhaler daily and using the rescue inhaler quite frequently. No more! His allergies are a little more complicated. He is still very “sensitive” and reactive to certain foods, although Dr. Rapaport tells us to let him eat what he wants. He can now have wheat, dairy and soy in limited amounts. We still can’t do egg, but we are working on that with his allergist. As his skin has gotten better, he has been able to tolerate more and more of his sensitivities so we are hopeful. We just had his IgE level tested, and it was extremely high, 24,000. I’ve heard this is common in TSW.
What kind of help during TSW do you wish from the medical community?
We had very little support from our local medical community, which made things very difficult. I was terrified to take him to the doctor, for fear of being reported to CPS. His pediatrician did not know of TSW and believed he had severe eczema and staph infections. She prescribed us antibiotics, but fortunately didn’t push steroids on us. I would have loved to have a doctor who was more open minded to hearing our story, and who was willing to read and learn more about TSW.
I also wish we would have been given more options to help control his minor eczema as an infant, rather than being pushed to use topical steroids right away. I was never warned of the side effects, and was never given another option. As a first time mom, I trusted our doctors and believed this was a safe option.
How is Colton doing today at 14 months TSW and what interests does he pursue in his free time?
Colton is doing so much better today. We are still dealing with itching and some rashes, but his body and skin have healed so amazingly. He is in preschool full time and is loving it. I never thought he would be able to make it through a full day of school, but his teachers are very supportive of his needs and help distract him from his itch. Colton is back to sleeping in his own bed and his own room, after sleeping with us for close to a year. This has been a huge win for us! Colton loves playing outside with his friends, riding his bike, and playing at the beach. He loves pretending and using his big, beautiful imagination. He has so much energy now and we are looking forward to starting some sports in the spring.
Update: Colton, 22.5 months TSW:
Colton is doing fantastic. We are now 22.5 months TSW and Colton is now 5 years old. Colton had a pretty bad flare this winter. He was hospitalized for a superinfection and had some pretty bad months. Since about May 2022, he has healed even more and is doing wonderful now – only having some minor itch and little rashes here and there.
