My last message didn't give me enough room. Here's my address:
11614 Walden Rd
Montgomery, TX 77356
PS - Do you still live in Coppell? We use to live in the area. Started off in Lewisville, but also lived in Plano, Frisco, and The Colony. I'm enjoying the Houston area though now. Although anything is better than the cold we endured when we lived in Ohio for 2½ years.
Matthew has a bone density scan, an appt with Dr Wong, an appt with pulmonology and the final day we meet with the people that will make his night splints. I would really enjoy meeting you when we are up there. I would like to do things with Matthew outside the hospital but I am not very familiar with Cincinnati.
Avery has a duplication of 3-7. I am on Facebook. I'll look for you. :) It looks like we along with Lori Ware will all be in Cincinnati at the same time, so it will be nice to meet up if we have the time. What type of appointments do you have scheduled for your first trip?
Hi Lee Ann,
Matthew was just diagnosed September of 2009. He was 7 at the time. He is on Prednisone, calcium and Miralax. I cant wait to start seeing Dr Wong so he can start Deflazacort as well. What type of mutation does he have? Matthew has a Stop Codon. He is doing pretty well. The side effecfs of the Prednisone are difficult at times. He has OCD and hand washes till his skin is red and scaly. He also has temper tantrums and screams a lot. We just ordered his wheelchair from MDA and the hospital. It will be nice to have at times. Are you on Facebook?
Hi Teresa, I thought I would comment to you here rather than in the "Dr. Wong" group forum. My son will be 6 in April. He was diagnosed at around 2 1/2 and has been taking Deflazacort since a few months after his 4th birthday. We have been visiting Dr. Wong in Cincinnati since early 2008. So far, he is doing quite well and I have only seen improvement, which is typical at his age. Since starting Deflazacort (he is also taking COQ10, Vitamin D3, calcium and omega 3) I have been very careful to keep him on a low sodium diet and make sure he drinks plenty of fluids. Fortunately it seems like we have seen little side effects from the Deflaz. How is your son doing? How did he come to be diagnosed?