Three Little Engines: Tremors

Saturday, October 8, 2011

Tremors

Aidan's hand/arm tremors have been steadily getting worse for quite some time. Dramatic but steady increase.

For some reason they are focused on it with this EEG stay.

Today they're supposedly suggesting the spinal tap again.

Forgive my sarcasm, but it's been suggested several times. We've also said, "yes, go ahead," each time. We've even asked about it. I'm hoping they will just do it while he's an inpatient anyway, and get it over with.

But that would make sense. :P

As for an update on his status. He's seriously miserable. Who wouldn't be with a hot cap on when you can't sweat, and an IV, confined to your bed? He had a breakdown last night. Again, can't blame him. They've seen seizure activity, but daddy hasn't pushed the button because he hasn't seen what we see here.

I've been praying so, that all or most of the seizures will show up and that the neuro reading it will actually see the patterns and report them. Can you tell I have really shaky faith with all this? EEG's just aren't that reliable. But they're all we have.

*** Spinal tap is scheduled for Monday.

1 comment:

Anonymous said...: Sorry to hear Aidan is so miserable. We continue to pray that his suffering will be eased and that the doctors will take appropriate tests and interpret them properly so Aidan will get the help he needs.
Love to everyone,
Elle; October 8, 2011 at 4:21 PM

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Okay, here's the thing:

For those who don't know already...

My oldest, Aidan, was diagnosed with a severe form of Epilepsy called Lennox-Gastaut Syndrome that is not treatable by the time he was 5yrs old. Then Jacen, with mild Cerebral Palsy w/seizure disorder, and Damon with Epilepsy. Later, after extensive testing, specialists said we are dealing with an untreatable neuro-degenerative genetic disorder that all three boys have. Genome sequencing results are still pending for mitochondrial forms that all testing and history points directly to. Heartbreakingly, Aidan passed away September 14, 2014.

All 3 have had varying degrees of developmental delays and regressions, but the same symptoms and in the same cycle. They are just at different stages of the disorder. The genome testing will hopefully provide an answer to the specific genetic markers causing all this so we can maybe, just maybe, make them a little more comfortable as they pass away. Jacen and Damon have now been diagnosed with LGS as well. And Jace is on Hospice. This is my journal.