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Amit,
Bradley was on prednisone high weekend dosage from age 5.5 years to 11.25 years. He then started on daily deflazacort and has been on it for the past 2 1/2 years.
It's awful that he is having so much pain and then the fear of moving the wrong way.
Yes he takes Advil. But now we are dealing with fear. He is petrified that if he moves a certain way he will get pain. He will be screaming and i will ask what hurts and he says nothing I am just scared.
Michelle
Thanks for responding Lisa
Johnny recently had xrays and nothing showed up. He is complaining of low back pain when he first gets up and then it goes away. I am not sure if he has sciatica or they missed something on the xrays. Is the Fosamax helping?
Michelle
You are welcome, Farrah!
It is very important that we remain hopeful in this fight against DMD.
Nicole,
I am so glad that reading this note has been encouraging to you. There is a lot of hope! I can't tell you how thankful I am that Bradley is still walking. Every day that he continues to walk is a gift from God. I wish the best for your son as well.
Michelle,
The compression fractures showed up on thoracic/lumbar xray. They have been doing this same x-ray every 6 months and it never showed them before. Bradley had been complaining of back pain more recently. Around Christmas and New Year's Bradley started playing a lot of Ping Pong. He found a way to play it by himself. He was having to bend over and pick up the ball alot and he said one day it felt like something popped around the sacral area. We wonder if one of them may have occurred at that time. The doctor said L5 is just above the sacrum. He also has bone density scans. They were doing them once a year but the last 2 times it has been at 6 month intervals. I believe the bone scans are very important. But it was the lumbar and thoracic x-rays that showed the compression fractures.
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