Starting from the beginning..
Lucas started out with developmental regression, he stopped crying, stopped laughing,talking or even really being interactive. He also started to lose head control.
With all of these things they asked for a CT which initially showed fluid on the brain which led them to wanting a MRI; when the MRI results came back it didn't show an alarming amount of fluid but showed abnormalities of the brainstem and basal ganglia which then led us to OU Children's Hospital. They started lots of testing which include bloodwork, genetic and metabolic testing, EEG, EKG echocardiogram, lumbar puncture, eye exams and X-Rays.
Our first visit we were told his lactate levels were elevated but not something to really worry about at the moment until more tests came back, while there they began physical therapy as well. But at that point and time they were looking at a metabolic/genetic disorder.
Within two days he had developed seizure like episodes and once again we were admitted not only for the seizures but also dehydration. They ran a 24 hour EEG which showed electrical discharges and abnormal brainwaves which concluded that it makes him very high risk for seizures. They also found that he has an abnormal heart beat. We also got another test result from his lumbar puncture which shows that he has a waste product buildup as well and his lactate levels are still elevated. While at the hospital they constantly checked his lactate levels which are still going up. While in the first visit we kind of talked about a feeding tube but it became more apparent with our second admission that in the near future he will need one.
With just the few of these test results and his developmental issues it points to a mitochondrial disease or disorder (mitochondria are the powerhouse of the cells in our body that give us energy and help us). There are currently no cures for these disorders (which there are thousands and thousands of disorders) and only few are treatable with vitamins. While waiting for more tests to diagnose him, specifically genetics, with his specific mitochondrial disorder they are taking a shot in the dark and giving him a "mito cocktail" which is very high doses of vitamins in hopes that it will help. We are also seeing physical therapy, occupational therapy, speech therapy and a nutritionist.
While waiting for results we are currently trying to get in with a specialist in Ohio in order to get a better diagnosis and a more in depth knowledge of what we are dealing with.
- Katelynn Malloy
- Nicole Valentine
- Kirby and Kim Cox
- Tracey Scott
- Jamie Carpenter
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