My son is 71/2 and we just found out he has duplications in 13-21 - He is still very active, rides a bike and scooter and plays baseball. He has a mild positive Gower when getting up and down from the floor and is a bit slower than other kids his age. Other than that everything is normal. Anyone else out there with this duplication.
This is Semra İnanç From Turkey. I have a son who has an exon 2 duplication like your son. his name is Yiğit.He is 5 years old now. We have learned this condition since last july. Also, I'm a physical therapist. You guess that you and your family are very important for us. Our doctor gave us prednisolen 5 mg per day since last december. I'm wondered What is your medical programme? and how is Bradley right now? İf you accept to contact with me, I want to share something. I'm looking forward your answer. my mail adress is firstname.lastname@example.org
Thanks for answers, I am grateful to you for doing me a detailed explanation about your son.
Your information and experience is very important for me. All of you have been trying to cope with the illness for a long time. I'l follow up Bradley's development. My son has good fonctional capacity now. He takes some nutritional supplements like Bradley .
thank you again
with my best wishes
Lisa Jones said:
Hi Semra! Bradley is taking deflazacort 30mg daily. It is an alternative to prednisone. We get deflazacort through the mail from Master's Marketing in the UK. He used to take prednisone (high weekend doses), but he began to gain too much weight and was very moody on the weekends. Dr. Wong prescribed the deflazacort in June 2008 and his strength and weight have improved. Part of the weight improvement was making better nutrition choices and being on metformin for steroid induced diabetes for the past year. We found this out through glucose tolerance testing. Bradley is also on lisinopril and carvedilol for mild cardiomyopathy, fosamax for borderline osteoporosis, omeprazole for gastrointestinal reflux. He also takes a multiple vitamin, vitamin D, calcium, CoQ10, melatonin (to help him sleep). We also do daily stretches (which my husband does since he is stronger) and he wears AFO's at night. He also has hand splints but he is not very compliant with wearing them. The pulmonologist recently added deep breathing exercises. Bradley is 14 years old now. Bradley is really doing amazingly well. He is still walking even though MRI's of his muscles say he should not be walking.