We get our findings on our CBC as well as Thyroid, ESR, etc. tomorrow regarding our loveable little Trey... Was attempting to do some research to find out if any other levels are found to be raised in children suffering from this horrible disorder...

I know that we will be doing the muscle biopsy, and I am scheduled for genetic testing as he will be in the near future...just curious if any of you remember if any other levels in the CBC that were raised along with the CPK test?

HUGS to all! Cori

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Comment by Cori on September 6, 2009 at 2:27am
Just thought I would take a second to update everyone about the little mans status...so although his CPK levels are raised, all of his blood work came back clean (other then that...)...they somehow (I'd like to say forgot) to run his Thyroid function test, but liver enzymes, etc seem to be in the normal range...his Lymph count was borderline at 49.9 (50 is topout) so maybe (hopefully) we are looking at something else...

We meet for the first time with our neurologist on the 9th, at that time they have already scheduled to have his CPK rechecked, his DNA test done, and his Thyroid stats taken...here's to praying it is anything but this and I can be a strong advocate for all of you with helping with the fundraising, etc...

Hugs, Cori
Comment by Wyatt's Mommy, Melissa on September 5, 2009 at 6:24pm

My little ones CK and liver enzymes were both high. He's thyroid functions are also abnormal. Wyatt had a biopsy and genetic testing to confirm. We HAD no family history so his doctors at the time, did all kinds of tests to rule things out. Good luck! I hope his biopsy goes well.

I agree with Laurie call Cincinnati. Wyatt has been their patient for 6 months and we are blessed to have them fighting this disease with us and our baby.

Comment by Laurie Paschal on September 3, 2009 at 10:21am
I would highly recommend contacting Dr. Brenda Wong at Cincinnati Children's. Even if your son is not her patient, she will still answer any questions you have. Her email is brenda.wong@cchmc.org, and phone is 513-636-4222.
Comment by Cori on September 3, 2009 at 12:36am
Thank you both! We will see what happens tomorrow... Regarding the backwards way they are doing everything is I guess partly because they are trying to cover all basis...as far as me being genetically tested, my midwife (8 months preggo with baby girl now) recommended it since if I carry the gene I am opting to have my tubes tied shortly after labor as I know I couldn't go through this again... I guess if they find it on me then they most surely will find it on him... Isn't the muscle biopsy testing the only way for them to know whether it it duchenne's or beckers type? And we are debating at this time whether to save the cord blood banking at this time...haven't done much research yet as far as the stem cell research (since he hasn't been officially diagnosed) but if the gene is in the cord blood (not sure how this works) but it would probably be useless for him...
Comment by Janine on September 2, 2009 at 11:19pm
Normally they would do the childs dna test first. Then if a mutation is found they already know where to look on your gene to see if you carry it. As Laurie said if a mutation is found that would eliminate the need for a muscle biopsy. Why put the little guy through it if you don't need to at this point.
Comment by Laurie Paschal on September 2, 2009 at 5:54pm
Liver enzymes are elevated. Not sure about anything else. A muscle biopsy is usually not necessary unless genetic testing (simple blood test) cannot find the error on the gene.

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