Wondering if anyone's child has this deletion and how they are progressing.  CHOP in Philadelphia said out of 21 known with this particular deletion, 2 had becker, 18 had duchenne and 1 had an intermediate progression.


TJ's Mom, Tammy

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Tammy said:

Thanks JR, that is so good to hear...What is phisio and hydro?

JR said:

Hello Tammy, phisio is phisiotherapy and hydro is hidrotherapy (phisiotherapy in water). Both are conducted by a Phisiotherapist. My son takes deflazacort (0,75mg/kg/day), calcium, vitamin D, Lcarnitine, Protandim, CoQ10 and vitamin C daily. We take our son to London at least once a year, since he was 4, to see Professor Francesco Muntoni. 3 years ago, we saw Dr.Brenda Wong at CHO in Cincinnati. She seemed to be great. I would recommend you to see her.

I don't know how the care is at C.H.O.P. We have always gone to Dupont. His Muscle team Dr.s are wonderful! Dr. Scavina(Neurology) Dr. Heinle(Pulmonology)and Dr. Mackenzie(Orthopedics) Dr. Mackenzie is the one who did his Spinal Fusion. Josh is not on supplements other than Calcium and Vitamin D. He used to take Prednisone and once he stopped walking, I took him off of it. He is on a double dose of vitamin D right now, as his levels were really, really low and we wanted to boost them up for surgery. In July, he will start a treatment of Pomidronate(not sure of the spelling). He had 2 fractures in 3 months, so hopefully, this wil help. It's nice chatting with other parents!! Take care!

Hi JR,

Do you know if clinical trials have started for PRO045 in UK. Any information on the same?

JR said:

My son has a deletion of 45. He is almost 16 and still ambulant. He uses wc for long distances only or crowded places. He takes deflazacort since age of 6. phisio twice a week, hydro twice a week, stretching done by dad every other day.


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