Juven contains L-Arginine that is supposed to help upregulate Utrophyn. For my son at 7 1/2, dr wong recommended 1 packet a day or if we want to be careful with sugar, then L-arginine supllement 7g a day.
I just posted this on Danny's caring bridge site so I copied it here. We have done nothing else new in the last six months except add Juven in May so we have to believe the results are because of it:
Yippee!!! For once I am happy to be reporting very good news. Danny and I went to Gainseville, Florida for the MRI study that he is involved in. When we went the 1st time you may remember that the results where not terrific. The calf muscles had much more damage than he should have had at the age of 5. Now, 6 months later the results are amazing. The quad muscle was tested this time and showed very minimal involvement which is great for his age. More importantly are the functional strength testing, ie: running 30ft, walking 30ft, getting up off the floor, getting up from the chair, and working on the functional strength machine. THE TIMING TRIALS ARE SO MUCH BETTER THAN 6 MONTHS AGO. The only thing we can attribute this to is God and the Juven supplement. We are so thankful. We knew that his cpk blood levels are the lowest they have ever been (28,000 highest to now a low of 8,900) we also knew what we where seeing with his endurance, energy level and strength, It was great to finally see that it also is what is going on in his body.
Very interesting to read these improvements for your son. I'm so glad to hear it! Our son, Jake, was just diagnosed last year. He's been on Deflazacort, a multi-vitamin, calcium, CO Q-10 and vitamin D. I'm wondering if we need to add anything else to his regimen. I'd love to hear any recommendations. I'm thinking we would probably need to go with L-arginine if it is less likely to cause weight gain than juven. A while back, he was slightly above his growth curve for weight gain. Anyone know if L-arginine is supposed to be as effective as juven? Also, any ideas on how I would find out the dosage amount? He is four-years-old and weighs about 31 lbs. I appreciate any recommendations!