Well, that ended poorly

The Crap

The EEG was not a happy event. No surprise there, I guess. I was likely more hopeful than even I thought I would be.

Some notes from our shiny new neurologist:

  1. The EEG revealed that E is still having seizures. They are difficult to identify on sight if you’re not a neurologist, as they can resemble constipation, gas, muscle spasms, startle reflex, etc. He hasn’t had any large scary ones yet, but the ones he is having are definitely hindering his development. We also got an ACTUAL! Diagnosis: focal epilepsy with secondary generalization. The doc upped E’s dose of Keppra, and we are slowly titrating up to that new dosage amount. Annoyance: besides the obvious He’s still having seizures, goddamnit, it’s likely we won’t be able to tell if this dosage works until he has another EEG.
  2. E’s head is too big. Yes, this is a family joke — A has a big head, as does his entire family. But the doc said he did not expect E’s head to be so be big and so continually disproportionate to his size, and said there might be a possibility of hydrocephalus due to blockage somewhere in the brain. (Due to improperly healed brain bleed/ventricle/something something/I am not a neurologist, you know.) So we are going to have another MRI. Annoyance: Once we decided to do it, I wanted to do it immediately. I cannot look at E’s head or behavior without worrying Is that what is going on? If it is, it’s gone undiagnosed way too long, which both enrages me and scares me. Wait, wait, wait, wait, wait, wait, WAIT. All we’ve done for the past two years, it seems, is WAIT.
  3. Developmental outcomes and future prognosis for E: not so great. But we knew that. Annoyance: we knew that and it still made me sad.

We talked about the cause of E’s problems: chorioamnionitiswhich is inflammation of the placenta by unspecified infection. This was mentioned briefly by my OB in South Dakota, but only in passing, with kind of a shrug. Whoops. Who can tell? The doc didn’t agree with our previous docs’ opinions that E’s stroke happened sometime up to a week or two before birth — he thought it happened either at birth or just immediately before. But then, I don’t know if our new doc had read all the records yet. Our appointment was scheduled so far in advance, he should have. But even when I’ve signed release forms months earlier, docs never seem to have them all. I wonder if there is some professional stinginess at work? Or just incompetence? Or the chronic understaffing problem we saw at a few of our last medical centers.

The doc told us briefly about his wife and his own two children — the eldest of which had been born with some kind of medical problem. He was not very specific, but he did a good job at empathizing with us about some of the struggles before and ahead.

The Good

E now loves being in his gait trainer. It is so excellent, I can’t even tell you. We have a final screening this week and after that will finally — fingers crossed — be able to pay our bills.

The Crap, Again

Some douchebag on one of my brothers-in-law’s FB page declared yesterday that our new president had “fixed healthcare.” Why is it so disturbing when the norms discover trolling?

 

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