JollyRoger
Shared on Tue, 01/22/2008 - 14:22that everything looks fine, you get an email like this
I spoke with Dr. Kendall just a little bit ago. She said that she does want Megan to try the Creatine to help with her muscle pain. She said that she would rather her try it now while she is somewhat doing well than to wait for her to get worse and then try it on her. She said that she will have to have her kidney function tested every 3 months to make sure they are not having more trouble. She said that will have to be watched very closely. It can also cause her to have bad potty. Since she had this reaction with the L-carnatine she is not sure if the same will happen to her on this as well. If that happens she will not be eligible to take the creatine either. Now, here is the not so great part. Megan has not responded to the COQ10 very much at all. However, it is very important that she be able to take it as that is the only main mito medicine out there. She said that she was reviewing her levels and the COQ is causing her CPK levels to become even more elevated that they were last time. She said they have no choice but to lower her COQ dosage to half of what she is taking. Tomorrow I have to take her in to have a bunch of labs drawn again and she is going to look at her levels again. If her CPK levels do not come down Megan will not be able to stay on the COQ medicine. Which means Megan will not be able to take the only mito medicine out there for her disease. She said that she would not want to do this but at the risk of having her levels elevated to a dangerous level they may not have a choice. She said they are really going to have to keep an eye on her. I finally calmed down after talking to Tricia about it, who was also upset about, but it really made me upset.
Just so everyone gets a bit more of an understanding, Megan LOOKS great. She acts fine, and smiles, plays with the boys and other typical toddler stuff. But inside, she is a mess and this newest revelation complicates things quite a bit. The ONLY medicine available to mito patients is CoQ10, and now with this being decreased in dosage things will not get better. I hate to see my daughter running around and having a great time, but knowing that inside her body is a catastrophe waiting to happen makes being a parent a million times harder. I keep repeating the verse in my head:
Psalm 46:10
“Be still, and know that I am God!"
Being still is hard. VERY hard. Wanting to fix something yourself, is the predominate thought. Now, I'm being told to be still. As hard as this can possibley be, and with this news being some of the worst we have received in recent months, being still is going to take everything I have as a human being. This is where being a Christian gets tough, when you have to look over the cliff at a drop of thousands of feet, and God tells you to close your eyes and take a step. What would you do? I know what I'm doing....
Close eyes...
Step...
END OF LINE
JR
I spoke with Dr. Kendall just a little bit ago. She said that she does want Megan to try the Creatine to help with her muscle pain. She said that she would rather her try it now while she is somewhat doing well than to wait for her to get worse and then try it on her. She said that she will have to have her kidney function tested every 3 months to make sure they are not having more trouble. She said that will have to be watched very closely. It can also cause her to have bad potty. Since she had this reaction with the L-carnatine she is not sure if the same will happen to her on this as well. If that happens she will not be eligible to take the creatine either. Now, here is the not so great part. Megan has not responded to the COQ10 very much at all. However, it is very important that she be able to take it as that is the only main mito medicine out there. She said that she was reviewing her levels and the COQ is causing her CPK levels to become even more elevated that they were last time. She said they have no choice but to lower her COQ dosage to half of what she is taking. Tomorrow I have to take her in to have a bunch of labs drawn again and she is going to look at her levels again. If her CPK levels do not come down Megan will not be able to stay on the COQ medicine. Which means Megan will not be able to take the only mito medicine out there for her disease. She said that she would not want to do this but at the risk of having her levels elevated to a dangerous level they may not have a choice. She said they are really going to have to keep an eye on her. I finally calmed down after talking to Tricia about it, who was also upset about, but it really made me upset.
Just so everyone gets a bit more of an understanding, Megan LOOKS great. She acts fine, and smiles, plays with the boys and other typical toddler stuff. But inside, she is a mess and this newest revelation complicates things quite a bit. The ONLY medicine available to mito patients is CoQ10, and now with this being decreased in dosage things will not get better. I hate to see my daughter running around and having a great time, but knowing that inside her body is a catastrophe waiting to happen makes being a parent a million times harder. I keep repeating the verse in my head:
Psalm 46:10
“Be still, and know that I am God!"
Being still is hard. VERY hard. Wanting to fix something yourself, is the predominate thought. Now, I'm being told to be still. As hard as this can possibley be, and with this news being some of the worst we have received in recent months, being still is going to take everything I have as a human being. This is where being a Christian gets tough, when you have to look over the cliff at a drop of thousands of feet, and God tells you to close your eyes and take a step. What would you do? I know what I'm doing....
Close eyes...
Step...
END OF LINE
JR
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