To me it is crazy the difference from day to day or even morning to evening. Sometimes in the morning he will look awesome. Then at night he will look not so great. In a few days it will be a month off of steroids. A month. Crazy! He is better than I expected him to be at this point. His back is almost clear. Sometimes he looks amazing and I see healing. I have hope that he will continue to get better. Maybe because we didn't wait until the steroids stopped working before we removed the steroids it won't be as bad. I can hope for that!
We went to his allergist because they wouldn't prescribe him anymore Hydroxizine unless we saw them. Crap! Anyway, I was so very nervous. I talked to several people just to try and calm myself down. Every time I see them they ask what I am doing for the skin. I told them that we are just using Vaseline because I am uncomfortable with using steroids for the length of time that we have. The doctor stated "Yes, it is always good to get a break." I said. "Well for the last 2 years he hasn't had much of one". (Why didn't they encourage breaks? Why did they prescribe me a continuous dose, if that is the case?) I stated that there was a doctor in California that has done research in regards to Topical Steroid Addiction and withdrawal. I even stated that I had that doctors research if he wanted to see it. The doctor just shoke his head and dismissed what I was saying. Then asked something like "then what are you doing here?" I stated the only reason I am here is to get a prescription for the antihistamine. He upped the amount because of the itching related to the withdrawal and sent me on my way. I did leave the research papers that I had found on his desk. But I am pretty sure that he didn't read them. I was disappointed with the doctor's appointment. I know that he didn't argue with me about it. Or try and push steroids but I thought he would at least have a conversation with me about it and be willing to discuss it.He is one of the doctors in the area that actually writes articles up and is quoted in the newspapers sometimes. He was even awarded the most compassionate doctor in 2012 by some random company. I just thought there would be more. That he would care more about the care of my child to learn more about the subject or to want to listen to what I have to say. When he first walked in he was very friendly and talkative. After I mentioned TSA/W he stood back and was very dismissive. He didn't even touch or look at my child much. Were we not there to evaluate his skin? But whatever I guess. I am not sure why I expected anything different then what I got.
The back of his legs look AMAZING! It is the top of hands that look the worst right now.
This is a picture of my son in his bedtime get up. He has the socks tapped under his jammies.
