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 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.