Hi Christine; We visitn he MDA clinic at UCSF even though the one at Stanford is closer. We were extremely distraught and disapointed by the way were treated there. UCSF have been fantastic as has Dr. Strober. We have Calum's treiennial IEP coming up in a few days and am at a loss (for the first time) what I should be asking for from the school district and what services Calum should be receiving. We are in the San Jose Union school district. Was wanting to know what others are receiving and if they think it is helping. There has been services I have refused, just don't see where they would help, just would mean he spent more time out of the classroom. Any suggestions would help: Thanks!!
Christine, We probably saw either other and didn't know it. We've been home for about 4 days and I'm still recovering too. Wyatt did amazingly well on the plane for his first time. I'm feeling cautiously positive, which is the best I've felt in a few months. Keep in touch.
I haven't been on here in a while, but thanks for the welcome! We've been around PPMD since around 1995 - our son was diagnosed in 1992 at 2 1/2. Bill will be 20 in June (hard to believe), is in community college, almost has his driver's license (long story) and is doing very well. He walked until he was 16 and had heel cord surgery (his only surgery so far besides tonsillectomy). He has been taking Deflazacort every other day since he was 8 1/2. His heart function is fine and pulmonary is still at 83% - all in all, we can't complain too much!
I would love to chat any time about a pool program and what you guys are doing. I am in the water Monday/Thursday and Friday all day but am around on those evenings or any other days. My phone is 206-782-5555 (My office phone but it is a cell so I always have it.) My email is jennifer@wavetherapies. I hope to talk with you soon!
Hey! Please don't apologize. We're all right there together fighting the fight. I feel strong about a treatment that will help our boys. God is so good and we must keep our faith strong! Hope you're having a great evening.
Sorry. I don't know Karen Barnett nor have I heard ofher. Who is she? What is her contact information. We've only been in the Duchenne community since October. We're trying to learn everything we can and sometimes it overwhelming. Thanks a bunch.
I'm sorry to read of your son's dx. My son was dx in 5/2002. He's 9 1/2 now and doing very well. I'm sure your visit to Ohio will be much different than our typical experiences at local clinics. We've been going there since 2005 and our next trip will be in August or September. How would you like the flight information? Would you like to email me or call me? When is your trip scheduled? my regular email is: firstname.lastname@example.org and work is: email@example.com. Or you can call me at 714-856-5525 or work is 949-451-5216.
I called the person who handles the claims. They will probably deny you the first time you submit it. So then you will have to appeal it. It went to the board of trustees. It took a few tries, but in the end it will hopefully all work out. Good luck!!
Christine, I really would love to talk to you because it is so crucial to have good care and the Dr's here are not up to date. There is a good Dr. in Portland named Dr. Russman and he is at Shriners. Unfortunately Oregon like several other places is pretty behind in terms of DMD.
Call me anytime!
yes, Tyler has seen Dr. Goins here in Eugene but we take him to Cincinatti, OH to Dr. Wong twice a year. I am sorry it took me so long to get back to you. Please feel free to call me anytime @ 541-744-7134 or email me firstname.lastname@example.org. 8 years old is a late diagnosis I would love to talk to you. Take care!