I'm a mother of 2 great kids. My daughter is 12 and softball is her life. My son Jordan is 8. He was diagnosed with DMD in March of 2002. Jordan also has ADHD and some developmental issues. He has taught me so much about life in the short 8 years he has lived.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
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We just got the medicine yesterday! Now I have to get back into the routine of mixing it. I use a Tupperware Shaker (the smaller size). I think it helps to mix it ahead of time (up to 24 hrs. ahead) so it dissolves better. I also heard that some use warm milk or water to mix it, then cool it in the refrigerator. I made a mess last night because I didn't open the lid of the shaker to release the pressure and it popped open while I was shaking it :( . Do you have any tips for mixing the med.?
I'm glad you're son is still walking, and I'm anxious to know how he does being on the medicine again. I wish they would be doing some type of strength measurements this time. They did a few "off-the-record" tests of Ryan's arm strength for us.
Hello, Melissa! Was your son in the Ataluren trial? Our son was. He will be starting the low dose soon. In the previous study, he received the high dose. It seemed that he declined more after coming off the drug (during April & May of 2010). In Oct., he quit walking (at age 14 1/2). So he is in the intermediate group between DMD & BMD. What was your son on, and did you think the drug was beneficial?
Just "friended" you, have not been on here for a while. Have you been asked to go back on PTC and have you decided ? Also, we are considering a move to one-hour outside of Cincy area, how was the drive and doing the study ?
Soo glad that Jordan is doing well. It sounds like he loved camp, I know James did. He went to camp in June and still talks about how much fun he had and of course, how much he misses his counselor...he really liked her so we are requesting her again next year.
Yes, I do remember you. How is Jordan doing? Did he make it to camp this year? James is 9 and entering 4th grade...he is doing okay. Thanks for adding me to your list of friends. Hopefully now we can connect more frequently through here. Take care. Fran
Hi, I have left you a message. What is a good time to reach you? My work schedule is different every day. Mostly compiling data fromthe research right now. When can I come down and meet Jordan and you? Usually weekend work best for me. Jon usually drives me and drops me of. This way we get to spend a little time together on the wkend. Look forward to hearing from you! Donna
I have reached the minimuim boys&moms that I need. Yet, I would welcome meeting with you and your son. After you; the interviewing will be closed. I am so happy to hear that your going to be included! My phone is work; 630-353-0697. Cell 630-341-3839. I can come to you. Just tell me where. Thanks! Donna