Sick as a dog having been down with the stomach flu, I was not about to miss our follow up appointment with Mitchell’s neurologist. I barely made it there but Chris met me and Luke came too.
We are still crazy about Dr. DeGrauw. He showed us comparisons over time of Mitchell’s MRIs and results of additional testing done. He still leans towards Mitchell's issues being chemically based. Meaning somehow Mitchell doesn't metabolize something quite right. I took copious notes as he detailed out how the body creates energy from glucose through the mitochondria. He sees dysfunction with how Mitchell creates complex I. While a test shows that, outcomes aren't classic for a mitochondrial disorder because they do not show increased pyruvate or lactate, so he would say that Mitchell’s diagnosis is “probable mitochondrial disease.” He stated with a mito issue, a third of children stay the same, a third improve over time and a third regress. He has tens of kids on his caseload with a complex I deficiency and he said they all look different. I've started researching www.umdf.org to find out more.
There’s no cure, but some people with these issues benefit by taking CoQ10 in a pretty high dose. I’ll order it online then start giving it to him. After 30 days we are to take Mitchell in for a blood test to check absorption. Surely, we’ll be watching for any changes in Mitchell. Doc said not every child shows result, but some do including improved functioning of head control, hearing, vision (wouldn’t that be great!) and muscle strength.
He said to wait on additional testing right now as it wouldn't change the recommended treatment. The door is still open that it could be something else. If the supplement doesn't make a difference, we may then be asked to change his diet or take other supplements. We'll see.
Our ask….prayer has worked. When everyone has prayed for something specific, later it’s been remedied. Like white matter. Now all our prayer warriors out there need to pray for Mitchell to process energy correctly, especially the creation of complex I and meanwhile his taking of CoQ10 brings remarkable results.
Thanks and love to you all!
1 comment:
Absolutely praying. Thinking about your earlier post as well. I think beyond anything we want to protect our children. There are times when I watch how I react to something involving one of my boys and think if it was me that it happened to I'd be able to handle it...but since it is them my momma bear protection instincts come out? Does that make sense? I think our children teach us that things we once thought made sense aren't as clear. Beyond anything we want our children to be fully loved and protected by everyone and we'll do just about anything to try to make that happen. Most importantly - you are a wonderful mother to Mitchell and he is so very blessed.
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