I have been avoiding this blog not because I am too busy but because I have been overwhelmed with what has been happening. Spencer continues to struggle. Struggle in ways I have never seen him struggle before and it's been scary to watch.
I am not even sure I can describe what is happening to him. At times, it's like watching someone have a stroke or blowing up a balloon then letting it zip at a furious speed until deflated within seconds. This is literally happening to Spencer. One minute he seems okay, not great but okay and without warning, he is completely deflated, no energy whatsoever. I don't mean he is just tired but can barely move his limbs, lift his head. It can last a few hours. Tuesday, it was scary. So scary even Sam and Shelbie were in shock to watch him. His eyes seem to glaze over and it's like he's gone, a switch of light flipped off.
I have no idea what is happening. I have emailed several of our doctors but have not received a reply yet. He has also developed a tremor in his hands, at times he can't even hold a pencil. Tonight, at dinner he said, "Mom, something bad is happening to me. Something is really wrong. I'm a little scared." He continued to tell me that the night before last, he woke up and couldn't feel his legs. He kept trying to move them but he couldn't move them, again, he was overcome with weakness.
I have heard from other mito moms and this sounds similar to what some of their kids sometimes experience. They called it a 'Mito crash'. I've also heard it called a 'Mito storm'. It can last for days at a time and then as quickly and mysteriously as it showed up, can disappear and they recover...usually, that's the hope at least. I had another mother tell me that this kind of thing happened when her mito son was on high doses of steroids. The steroids actually break down the muscles. Both are interesting thoughts, not what I want to hear. There is no cure or treatment. Of course, all this is only coming from mito moms, not a doctor so it could all be way off base but it certainly sounds familiar when I hear these moms talk about their experiences.
He finished his steroids today! Thank goodness! I am praying that we start to see some improvements now that we are done with that evil drug! If this truly is a mito crash...I am going to have to dig deep to find some peace about this. The only other time I have felt this scared was the first time I gave CPR to Shelbie when she was just two years old.
I am not even sure I can describe what is happening to him. At times, it's like watching someone have a stroke or blowing up a balloon then letting it zip at a furious speed until deflated within seconds. This is literally happening to Spencer. One minute he seems okay, not great but okay and without warning, he is completely deflated, no energy whatsoever. I don't mean he is just tired but can barely move his limbs, lift his head. It can last a few hours. Tuesday, it was scary. So scary even Sam and Shelbie were in shock to watch him. His eyes seem to glaze over and it's like he's gone, a switch of light flipped off.
I have no idea what is happening. I have emailed several of our doctors but have not received a reply yet. He has also developed a tremor in his hands, at times he can't even hold a pencil. Tonight, at dinner he said, "Mom, something bad is happening to me. Something is really wrong. I'm a little scared." He continued to tell me that the night before last, he woke up and couldn't feel his legs. He kept trying to move them but he couldn't move them, again, he was overcome with weakness.
I have heard from other mito moms and this sounds similar to what some of their kids sometimes experience. They called it a 'Mito crash'. I've also heard it called a 'Mito storm'. It can last for days at a time and then as quickly and mysteriously as it showed up, can disappear and they recover...usually, that's the hope at least. I had another mother tell me that this kind of thing happened when her mito son was on high doses of steroids. The steroids actually break down the muscles. Both are interesting thoughts, not what I want to hear. There is no cure or treatment. Of course, all this is only coming from mito moms, not a doctor so it could all be way off base but it certainly sounds familiar when I hear these moms talk about their experiences.
He finished his steroids today! Thank goodness! I am praying that we start to see some improvements now that we are done with that evil drug! If this truly is a mito crash...I am going to have to dig deep to find some peace about this. The only other time I have felt this scared was the first time I gave CPR to Shelbie when she was just two years old.
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