I am hoping this week we may have some answers about Kadian. Tomorrow she goes for her anesthesia consult for her MRI. Wednesday they will put her asleep to do the MRI. They're checking to see if she also has spinal lesions and to see if the tumor on her spine has gotten any bigger. Friday we found out she still has an UTI. This means she has had an UTI for 6 weeks now. The sad part is she is getting UTI's while already having another. How do we know its not the same infection b/c it has been different bacteria. The 2nd one was supposed to be killed by the same medicine she was already on.:( Her pediatrician recognized the fact that the Urologist needed to get involved to figure this out. Hopefully tomorrow they can figure out what to do. Hopefully they will also talk to the GI people to get her referral to the surgeons for her cecostomy tube. I am hoping they get this stuff straightened out tomorrow. I still haven't heard back about her having the muscle biopsy. I am planning on calling them this week and Tricare to figure out what needs to be done so we can figure out if she has some type of Mitochondrial disease.
Sean is still in his flair up. They gave him some medicine that is supposed to cause his body to make steroids. Not sure it worked though. He is still in a lot of pain, numb, and tired. I teasingly put my cold soda against his leg and he didn't feel it:( This breaks my heart because he hasn't had numbness in his legs till this time. They did another MRI on him last week so when he goes back to Dr.Cantor we will know if he has lesions down the rest of his spine. We know for sure he doesn't have AMN so it's down to Devics Disease and MS.
Please continue to pray for our family. This has been a hard time for us. I just keep praying for God's guidance and strength.
2 comments:
Hi Candace! I'm wondering if there is some sort of connection between FODs and MS. My son Luke has LCHAD, and before he was born, I was diagnosed with MS. I'm in remission and have been doing quite well. Sending lots of hugs and good, healthy thoughts to you and your family!
Love,
Beth
I have read that they are finding connections of MS(along with some other diseases) to mitochondrial dysfunction. The symptoms of MS are similar to Mitochondrial disease so who knows. We have spoke to our genetics doctor in depth about all three of them. So hopefully all these doctors can figure them out. I am keeping my fingers crossed.
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