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ELEVATED ALDOLASE

 
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ilianna1



Joined: 12 Jun 2009
Posts: 13
Location: ONTARIO, CA
PostPosted: Wed May 19, 2010 1:24 pm    Post subject: ELEVATED ALDOLASE Reply with quote
Hi. My son in 13 years old. My son was diagnosed Dec 2006. His condition has been very much active for past 3 1/2 years. We have tried different treatments and they only last for so long before they are no longer working.
He is currently taking monthly IVIG & Solu-Medrol IV because he was not doing good. He has been on that treatment for about 4 months now. He is also on oral prednisone, cyclosporine, weekly methotrexate injections and leucovorin.
My son feels much better than he did 4 months ago. Question I have now for everyone is that the doctor states that his aldolase levels are way elevated. I think they are 10xs what they should be. But now he can run, play outside and exercise. Including sit ups which we all know the neck muscles are the last to come back. Before he couldn't even do 1 now he is at like 45-50. Of course, not all at the same time.
I don't understand how he can be physically be doing better in our eyes but according to blood work he isn't. Doctor says maybe because he is more active that he is elevated. Doctor ordered MRI. She had temporaryily suspend the IVIG & Solu-Medrol IV because my son refuses to go. He says he feels like a drug addict. Has this happened to anyone else?
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I HOPE ONE DAY FOR JDM TO BE A THING OF THE PAST AND FOR MY SON TO BE A KID AGAIN. GOD BLESS Smile
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Kya's Mom



Joined: 13 Feb 2009
Posts: 200
Location: Leedey, Oklahoma
PostPosted: Fri May 21, 2010 6:23 am    Post subject: Reply with quote
I wish this was posted on the support string and more people would see it, but I will try to help. We have not experienced this. However, there was an older girl who posted about the same things happening to her because as she got her strength back she became active again and resumed her normal activity level. Her blood levels would not normalize and they could not get her out of the flare because the muscle activity kept the muscle enzymes up.

I think she ended up having to stop her activities or drastically reduce them to get out of the flare. I wish I could remember exactly. Look through some of the older support posts and you can probably find it. I will look also and if I find it I will let you know where the post is.
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Diagnosed 1/9/09, 2 Years Old
www.kyasjourney.blogspot.com
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