Monday, September 16, 2013

Where Does Mitochondrial Disease Hide?

The picture below is a great depiction of where Mitochondrial Disease hides, and really how and why it presents differently in each person. Landon presents as severely Hypoglycemic. Most people who don't know us would have no idea that he was in fact diagnosed with a terminal illness. He looks 'normal,' except maybe the Medical ID Bracelet that he wears. I tried to get him the most unrecognizable one that I could find, we went with a Road ID. But enough on that, and back to Landon's presentation of Mito.

Landon 'dumps quick,' which means that when he fasts or gets a simple virus his body dumps his blood sugar in a very rapid fashion. When he was 10 months old, he had a simple gastric that you and I have fought off numerous times with pushing fluids and rest, and his refusal to eat or drink (because none of us are really interested in that when we are puking, etc) caused his blood sugar to go from 84 to 48 in a matter of 2 - 2.5 hours. To put that into perspective, 48 is two (2) points above the body going into seizures and convulsions from severe low blood sugar. A lot of people upon hearing this tend to think he's diabetic, where in fact it's actually quite the opposite. If we would not have know about Landon's Mitochondrial Disease, we would have lost him to this simple stomach bug at 10 months old.

Landon's specific type of Mitochondrial Disease is called VLCAD, I will have a separate post about it later this week, but the cliff notes version for this post and simply put - his body does not make enough of the amino acid, levocarnitine, to break down very long chain fats, move them across the cell membranes and turn them into energy. He is on a very strict low fat diet, and more meds than most geriatric patients. For him, Gatorade is better than water. In fact when he is active, such as swimming, running, playing soccer, etc, we have to stop him for snack and gatorade breaks to make sure that he has enough to sustain his blood sugar.

I will leave this post with the scentsy warmer that was so graciously sent to us by another mom of a child with Mito. The image on the warmer is in honor of sweet Mylee Grace, whom we lost to this terrible disease last June. The green ribbon that you see on the warmer, as well as throughout the blog design is the Mitochondrial Disease Ribbon.  Mylee was only 5 years old when she lost the battle with this disease, and her family are very close friends of ours and have helped us in ways we could never repay. I found it fitting that we received this during Mito Awareness Week, and Landon told me tonight, 'mommy I am so glad that Mylee is living with us and is keeping me safe.'

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