Friday, March 27, 2009

Taking the Leap of Faith

Over the next few weeks I corresponded through email with Dr. Siebert. I also had two more phone conversations with him. I emailed him some photos of Hank and heard right back from him. He told me that he saw what I saw. That Hank had some atrophy, and he confirmed that it was indeed, Parry Romberg's Syndrome. Damn! I knew that, but I couldn't help but hope it was something different, something easier, something that wasn't a rare incurable disease!

We talked about Localized Scleroderma and Parry Romberg's. Are they the same thing? What is the difference? Is Parry Romberg's just a tougher strain of it? Which is worse?

The answers were what I thought... that in his opinion, PRS and Scleroderma were two different diseases, PRS has other symptoms associated with it...strokes, seizures, neurological problems, making it worse than Localized Scleroderma... oh sure, HAD to have PRS and not LS! Damn again!

Dr. Siebert put me in touch with Dr. Thomas Lehman, who is the leading pediatric rheumatologist in the nation. We corresponded through email, but he said it was difficult to give advice without seeing Hank. So we basically talked about what he thought about methotrexate and steroids as treatment. He said that he does not use steroids for the treatment of PRS, which I found interesting. He said that PRS is a slow progressing disease and does not warrant the use of steroids, but he does prescribe it for other conditions. And he does use methotrexate for the treatment of PRS.

Dr. Siebert and I talked about treatment options and surgery. He was great. He never tried to "sell" me on surgery, but instead put me in touch with some parents who had children who went through the surgery. I spoke with two moms. One had a boy who went through surgery 15 years ago. She told me all about it, spoke with tremendous love for Dr. Siebert and sent me many before and afters of her son. He is 19 now and beautiful! I was amazed!

The other mother has a daughter who went through the surgery around age 5 and she is 9 or 10 now. She also sent me photos. Her daughter is beautiful and one would never know she ever had any atrophy at all. Her little girl is active and living and loving life. What an inspiration!

Both mothers answered all my questions and told me that if they had to do it all over again, they would...and they would have done it earlier! One of them told me, "just do it, you won't regret it!"

Every email that came through, every phone conversation I had, I told Jeff about. Together we discussed what to do over and over again. But when Dr. Siebert said, "Come to New York and see me," we said OK! And so we made the appointment for March 18th. We were going to New York! We were finally going to meet Dr. Siebert! I hung onto his words of, "Don't worry, I can help." And then the questions started playing through our heads...
How are we going to get to New York?
Who is going to watch our little ones while we are gone?
How much does a hotel room cost in New York?
But it didn't matter, come hell or high water, we were on our way!


  1. Terri, I have not asked (and maybe you don't know) but did Dr. Siebert give hime opinion on surgery for LS en coup de sabre...success etc.? I still struggle with this whole thing (not yours, but my daughters). Thanks!

  2. Terri,

    Good luck with this. I developed Rheumatoid Arthritis a few years ago. It took about 6 months for Methotrexate (and a host of other medications) to start working. Auto-Immune diseases are so under-researched. I have my own theories about the development and progression of my condition. (I'm in remission now, but far from being the same before RA.)

    I am glad you've worked hard and have been proactive, informed, and championing your cause. You will be glad you did.

    Best of luck to little Hank!