Lowering CPK


One indication, as I understand, used in clinical trials to check Duchenne treatment efficacy is to check change in CPK's level.


I ask from all parents who changed their son's diet or supplements intake and checked the CPK before and after the change, to share their results with me, Hadas and all other
interested families and boys.


If you post thanks a lot. please try to post only facts and as much facts as possible and try to limit to facts around the period that the CPK checks conducted. (Falls around the CPK
checks? Steroids? If yes which? Mutation? Age ? Etc..).


Hadas's Two different CPK reading and diet change in between provided below:


1              Facts


·         Hadas born December 4th, 2006


·         3-7 duplication


·         Twisted his ankle on April


·         No steroids


 


2.            First Reading


CPK reading on May 27, 2010 ---------15047


3.            Diet & supplement change after May 27th , 2010


Food & supplements

Date started (day.month.year)

amount

comments

Milk and Diary

15.6.10

No milk, very limited diary

Based on research pointing to efficacy of it

Junk food, corn & sesame limiting

21.6.10

limited

 

Turkey

14.6.10

meal

(~3 times a week)

Green tea

21.6

400

Based on research pointing to efficacy of it

Q10

14.6.10

60

 

Vitamin E

14.6.10

400

 

Multi Vitamin

14.6.10

Including B3,B6

 

Omega 3

21.6.10

EPA 180

 



 


4.            Second CPK reading


CPK reading on June 28, 2010 ----12679


5.            Conclusion


 


CPK was lowered after change in Diet. This might have a correlation. I really don't know.


Lots of love to all of my family out there,


 


Nimi (Hadas's father)

Views: 496

Replies to This Discussion

Dear Nimi, I think that the CPK is not a very good indicator of a treatment efficacy. When my son Eyal was diagnosed the first CPK value was around 11000, the doctor ordered another analysis to confirm that it wasn't a mistake and the result just a week after that was around 20000.
Nimi, That would be wonderful if diet would do that. I would just keep watching your son. My son Wyatt's CK was 29000 the first time, then it went down to 17000, then it went back up to 27,000. All of these CK tests were prior to us giving him any supplements or changing diet. If you son's CK continues to fall, I would talk to his doctor about it. Good luck. I hope you guys have a great day.
Thanks for the reply. From your experience it seems that CPK is not a good indicator. I know that it is used though.

Ofir Arad said:
Dear Nimi, I think that the CPK is not a very good indicator of a treatment efficacy. When my son Eyal was diagnosed the first CPK value was around 11000, the doctor ordered another analysis to confirm that it wasn't a mistake and the result just a week after that was around 20000.
Thank for your mail. hmm...I see it is totally not simple. but still if anyone has good experience (or bad experience) of CPK change in the same time period of change in diet or supplements I would be happy to hear.



Wyatt's Mommy, Melissa said:
Nimi, That would be wonderful if diet would do that. I would just keep watching your son. My son Wyatt's CK was 29000 the first time, then it went down to 17000, then it went back up to 27,000. All of these CK tests were prior to us giving him any supplements or changing diet. If you son's CK continues to fall, I would talk to his doctor about it. Good luck. I hope you guys have a great day.
Hi-- I am just about to undergo my own experiment in this regard. My son will be 9 next month, and his CK level in March 2010 was just under 27000. That was an increase from the previous check which had been in January. However, at the end of March 2010 he started both GH therapy and taking Juven much more religiously. His CK steadily decreased until it was just over 8,000 in August 2010. However, in september I discontinued the juven and went to pill arginine and glutamine b/c he did not like to drink the Juven. His CK went back up to just over 14,000. I plan to start juven again next week to see what happens at his next blood draw, which isn't scheduled until March. I will be very curious, and so is his dr., to see what impact there is. All his blood draws were done in the early morning after breakfast, and all by the same lab. Therefore, I wouldn't expect his daily activity to be impacting his CK level that much.
I'll keep you posted
Thanks for sharing with all this interesting information.

Regina said:
Hi-- I am just about to undergo my own experiment in this regard. My son will be 9 next month, and his CK level in March 2010 was just under 27000. That was an increase from the previous check which had been in January. However, at the end of March 2010 he started both GH therapy and taking Juven much more religiously. His CK steadily decreased until it was just over 8,000 in August 2010. However, in september I discontinued the juven and went to pill arginine and glutamine b/c he did not like to drink the Juven. His CK went back up to just over 14,000. I plan to start juven again next week to see what happens at his next blood draw, which isn't scheduled until March. I will be very curious, and so is his dr., to see what impact there is. All his blood draws were done in the early morning after breakfast, and all by the same lab. Therefore, I wouldn't expect his daily activity to be impacting his CK level that much.
I'll keep you posted

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