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My son about to start steroid treatment

Our 4 year old son was diagnosed with Duchenne in November 2010 (Deletion 3 to 43). Under the care of Dr. Wong we are waiting for the results of a muscle biopsy to see the correct dose of steroid treatment. Dr Wong was impressed with his overall strength but puzzled by very high and changing CK values. As high as 97000 and down to 22000. We have Deflazacort at the house and waiting to start but naturally we are so apprehensive. The devastation of this illness has us so depressed with a feeling of helplessness and hopelessness. I know there are potential therapies down the line but we are afraid it will come to late or not help our son at all. Any comments of hope would be greatly appreciated. Rob

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Permalink Reply by amit gupta on February 25, 2011 at 12:23pm

Rob, PPMD is a great place to meet other families wrestling with a new diagnosis and to meet wonderful people who have gone through this phase. Our son was diagnosed in Jan'11. Be here and talk/interact with others and it will surely help.

Curious though...why is the CPK being repeated for your son and why is the biopsy necessary to determine the dose? I thought CPK was meaningless once the DNA test came back with the diagnosis.

Best wishes,

Amit

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Permalink Reply by Rob and Theresa Capolongo on February 25, 2011 at 1:10pm

Thanks for the response and support. They repeated the CPK because his original # was 47000. Dr Wong wanted it repeated and the number went to 97000 without exertion. She feels there could be something metabolic going on as well. The puzzling yet encouraging fact is that he shows alot of strength. Doesnt need hands to get up runs pretty good, ect. So she wanted to see if in fact there is more dystrophin in the muscle then suspected. Where are you from? Can you chat on the phone sometime, We are in the New York City area.