1. When did you start using topical steroids and why?
Torrin started at about 4 months for eczema. Small patches first seen on his upper lip and back.
2. What was the name of the topical steroids?
He was first prescribed hydrocortisone.
3. Were you ever prescribed more potent steroids?
Yes, over the next 8 years of his little life he was on and off of these steroids. Also, under occlusive wrappings (Wet Wrap Therapy for his last two years)
Hydrocortisone, Betamethasone Diapropionate .05%, Desonide .05%,Fluticasone Propionate .05% (external cream),Fluticasone Propionate 50mcg (nasal), Qvar 80mcg,Triamcinolone Acteonide .1%,Qvar 40mcg,Elidel 1%, Fluocinonide .05%, Fluticason Propionate .0005%, Mometasone Furoate .1% (cream), Mometasone Furorate .1% (ex ointment), Mometasone Furoate .1% (ex oint), Protopic .03%,Pulmicort 1mg (inhale), Qvar 40mcg.
4. How did you find out about RSS?
On September 11, 2014 I was researching hemp oil (anything to “cure” him) on Amazon. I was told to check out a few sites in that review and ITSAN.ORG was one of them. As soon as I read the signs and symptoms, I knew without a doubt Torrin had RSS.
5. What made you feel you had RSS?
He was full body red, extreme itchy, dry/flaky skin, water burned and stung him.
6. Were you diagnosed by a doctor? Did you have a supportive doctor?
Yes, his pediatrician listened and read the ITSAN material. Then to just educate her on RSS and/or if we needed any medicines, we confirmed the RSS diagnosis with Dr. Rapaport via telemedicine.
7. What were your first symptoms?
Before we knew it was RSS, Torrin already showed signs of TSW ( “bad dandruff”, dry/flaky eyes and skin, redness, sensitivity to heat and water. When we stopped all steroids on 9/12/14 within a few days he became really red, itchy all over. His legs were swollen and could barely walk. The horrible “pins and needles”.
8. Is your family supportive? Friends?
Yes, our family was supportive. Friends were supportive but many just dwindled away and stopped asking to do things (because we couldn’t). We had no life for 2.5 years, basically.
9. Have you ever been to a hospital for this? Why?
Yes,about 28 months in I took him into Urgent Care because his arm looked like eczema herpeticum. Thankfully it was not.
10. What was the hardest part of this condition?
Everything! Watching your child itch himself till he was bleeding, the pain that followed, “pins and needles”, water like acid on his skin, watching his friends go to school, play sports, vacations, swim etc. We went from a very outgoing, athletic family to holed up inside their prison home for months and years.
11. How long have you been in withdrawal?
Since September 12, 2014, 29 months. Torrin is still in withdrawal and has flares on his wrists, knees and feet but nothing like on or after steroids. He was able to bathe and swim after 1.5 years into withdrawal.
12. What do you use as comfort measures through this?
At first baths and Aquaphor for 6 months into TSW. After that he chose moisturizer withdrawal so no bathes and very little Lemongrass Balm from Stephanie Home Apothecary and Honeypacificaco.com. Also, ice packs and fans.
13. Are you employed? Has this affected your job status?
I have always stayed home with my boys. I only worked part time but had to give that up to take care of him 24/7. Our family, unlike many others, were financially stable.
14. Has this affected Torrin’s education?
Yes! He missed all of 4th grade because he was bed ridden. I homeschooled him online last year and some of this year. He went back to school on 2/1/17. He was also held back a grade.
15. Have you gone to therapy/wish to go to therapy because of this condition?
No, we have not gone. Torrin seems to be doing fine and adjusting at the moment. Me, I’d like to go since I have been experiencing depression, anxiety and PTSD.
16. If there is one thing you could say to another sufferer, what would it be?
Sometimes just allow yourself to just lay there and breathe if that’s all you can do at the moment. Sometimes that’s all I could do as I laid on my bathroom floor at 2am crying because I watched him go through so much pain.
FAITH in God, HOPE that he will heal and the LOVE for my child is what got me through each day.
Thank you so very much for sharing your story, Torrin!