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Permalink Reply by Janine on January 31, 2015 at 10:12am

My son's level was over 20,000 at diagnosis at age five. At age 15 it was 2,994. It is my understanding that the levels are higher when the boys are younger.

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Permalink Reply by Yasha Singh on January 31, 2015 at 1:37pm

Thank you Janine, my son started with 17,000 in July and recent one was 9364.. I was hoping he is ok.. It sounds like CPK keeps changing..we haven't started steroids yet.. So I was confused why did the levels drop..then after i did some search on ppmd,, I got to know that change in diet and supplements can help and can reduce CPK..

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Permalink Reply by jiasusa5 on February 9, 2015 at 1:12am

Hi Yasha ,can I ask why you not starting steroids yet?my understanding is ck levels can be higher or lower but the deficiency is still there .Steroids slow the process of wastage of muscles.would you like to share what supplements you are using?

Thanks

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Permalink Reply by Yasha Singh on February 9, 2015 at 3:22am

Hi,
We start steroids soon. We are just waiting on the inclusion list of CAT-1004, new drug to go on trial. It would be an alternative for steroids and may include boys who are not on steroids to take part in the trial. If we have no info by April, we may start steroids depending on what the neurologist says.
We are currently giving vitB, VitB6, zinc, good bacteria, CoQ10, mag and cal(in one supplement).. We will be starting some more soon depending on his blood test results. He is on gluten free and kinda dairy free diet too, as these can be inflammatory for the muscles. Hope this helps
Thanks

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Permalink Reply by Jay Griffin on February 3, 2016 at 2:39pm

All,

My son is 6 yrs old.   We are not on steroids yet also.  We are waiting for the VBP-15 trial to open up.  It looks like it will be around March from my understanding.

We are now considering the CAT-1004 trial.  I am trying to find out what we need to do to get plugged into this trial.  Do any of you know what we have to do?

With regards to supplements, we tried CoQ10 for one day and he woke up with his feet swollen?  I "assume" it was because of that one dose.  For that reason, we haven't given it to him since.  Have any of you had any issues with it and have you all seen any benefits?

Thanks

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