Sunday, July 17, 2016

July 17th was Diagnosis Day.

Four years ago on this day we were in Salt Lake City at the Western Leukodystrophy Clinic. We had an appointment with a neurologist who had more knowledge of Leukodystrophy then the Neurologists in Las Vegas.

I have wrote about this before so I won't repeat myself, but this was the day we were told that Hailey had Leukodystrophy. He couldn't tell us which specific type Hailey had, but from reading all of the past years MRIs he was certain this was what Hailey had.

Fast forward 4 years later to today and we are only a tiny bit closer, we may even have a specified type of leukodystrophy now.

We wanted to verify with a neurologist if Hailey did in fact have ADEM Leukodystrophy. This type of leuko checks a lot of boxes for Hailey, but not every single box. We have yet to speak to or find a neurologist that specializes in Leukodystrophy look at Hailey and review her blood tests and MRIs. We have had 3 out of 9 "guess" that if Hailey had a Leukodystrophy it'd be ADEM which is: Acute Disseminated Encephalomyelitis

We have also done many genetic tests and have only come upon mutated genes for Hailey. There were a total of 4 that we were told about. One that is VERY similar to leukodystrophy but we have not been told if definitively. It's confusing because when the neurologist look at Hailey's MRIs they know she does have leukodystrophy, but since there are SO many different types and so many new and undiscovered leukodystrophies we are left in the dark.

In the end I guess it isn't SO important that we know, but I would like to know what else to expect. When Hailey needed a pacemaker was it because of the leukodystrophy? I don't know of any other Leuko children that have a pacemaker, but we do know that children with leukodystrophy do have issues with their organs since the brain controls everything. Hailey's cardiologist would love to know more about what had caused Hailey to need a pacemaker and she asks us overtime we see her if we have any new information.

So can I or should I go with ADEM Leukodystrophy as a diagnosis? Is there a test that can be done to tell us if that is the type she has? Is there a neurologist that will help us? We don't know. We still don't have answers, but every July 17th these questions really stand out to me and I wish I had answers.


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