Thursday, August 16, 2007
Today we collect urine. It was decided that we would capture Abe's urine at home rather than take him in to the lab to keep him from being exposed to anyone there. . . So it's my mother-in-law and me on a mission to catch Abe's urine in a baggie that literally sticks on him. I don't think it will be difficult, saw it done in the hospital. Much better than having him cathed to obtain urine and exposed to strangers with who knows what. The geneticist tech stated the acid 3-Methylglutaconic was not found elevated in Abe's urine and therefore they (the geneticist) are ruling out Barth's Syndrome. Even though this was not found in the urine, Abe could still have this acid elsewhere but the genticist refuses to do any further testing stating she needs it in his urine in order to go further with tests for Barth's. This is too bad because all the reading I do on Barth's and other disorders caused by abnormal amino acid levels do not consistently show themselves in urine, are more prominent in blood, and ultimately a chromosome test is the best proof. We have yet to see what comes with this, our pediatrician may go about this another way. Start with the urine and advocate for more if needed along the way. . .I'll let you know how the urine capture goes! Results take 2-3 weeks to get back.
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4 comments:
Hope the urine catching went well today. Abram is training his own medical team:) He couldn't get better care then yours. The whole testing, doctor, first, second opinion thing is so frustrating! Wishing you all healing, love and lots of prayers.
the urine catch did go well! I put it on, he peed in 15 minutes, put it in a cup and sent it off to the lab. no sweat! waiting for the results is the hard part. Hope you and that little bun is doing well!!! Think of you often and wish I could participate more with your pg journey with you!
Seems like the Doctors can make this whole thing harder. It has to drive you nuts. Wish they could just do all the testing possible for you. Hang in there!
Hey Kendra! It's true, it seems like I have to go through one doctor, and a tech to get to another, and then don't get the information I'm looking for. Health Care can be so frustrating. Something has to come of all of this. . .thanks for the support!!
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