When it’s me at the doctor, for my own body, if there’s any bad news strung in with hope, I’ll cling to the bad, certain I’ll meet my doom. But when I left Lucas’s neurosurgeon’s office, every warning about the possibilities of what might happen, or could happen, was pretty much ignored. One in ten kids with hydrocephalus might get epilepsy. Not Lucas, I thought. Most continue to live completely normal lives, and he’ll most likely be able to do exactly what any other kid can do. He’ll graduate from college. These are the things I heard. He just won’t be able to play football, hockey, or wrestling. No contact sports. No boxing or karate. No kicks to the head. "So I guess that means he can never get in a fight," Phil says to me later. "I mean, that sucks. I don’t care that he’ll miss out on some organized sport, but guys roughhouse. And it’s going to be up to him at some point to choose to be left out."
"Yeah, if that’s the worst of our problems, we’re doing fine," I say. "And we have years to figure out how to handle it. In the meantime, he’ll get tennis lessons." And there’s always basketball, soccer, track, swimming, baseball, and golf. "He can do ballet," the neurosurgeon says.
The soft spot on the top of his head, his fontanelle, is quite small. It’s still there. The bone has not yet fused together, but I ask what this means. "It’s not good. It’s not bad. Every kid is different. It doesn’t mean anything." Yes, but the neurosurgeon we saw in the ER the other day said it was a sign that Lucas couldn’t have been suffering with this for very long. If he had, the fontanelle would have grown bigger to accommodate for his expanding brain as it filled with fluid. "Yes, that’s true." So that is a good sign. It means this was sudden and we caught it early. But no one really confirms this; it’s just what I take away with me.
We looked at the comparative cat scans and x-rays of the shunt, which were all very encouraging. Lucas is out of immediate danger, so long as his shunt doesn’t malfunction or get infected. It takes months for the size of the ventricles to decrease, but they already are (albeit slowly). The doctor checked Lucas’s tone, his muscles at rest to see if they are rigid or too relaxed, and it was fine. All good signs. The jerking movements, the neurosurgeon says, might have to do with the decrease in pressure of his brain. That she’s not concerned right now about them. We’ve scheduled an MRI for Lucas before our next follow-up visit, in a month. We’re going to see our pediatrician then see a neurologist. They suggest waiting a bit though, a week or so. But I don’t want to wait. Phil has me in a panic. He’s researched and googled and thinks Lucas has infantile spasms, which ain’t good. But Phil’s no doctor, thank God, and no one has mentioned this possibility to us yet. I hate self-diagnosing. So now we have to check this out, by hopefully getting to a neurologist soon. I want to take Lucas to a neurologist in the next day or so, if only for my own piece of mind. I hate being this concerned, this frightened. Phil tells me there’s a 75% chance of mental retardation linked with infantile spasms, which of course leaves me beside myself. And no one has even told us Lucas has this! Though when I read the symptoms, it does sound exactly like what Lucas has:
The initial manifestation may just be a minor twitch of a single limb or eye. However, there are often associated symptoms. Many children who develop infantile spasms also have feeding difficulties and develop reflux. (This would explain his recent vomiting while eating). Arching backwards while feeding is an indicator for infantile spasms. (He doesn’t do this). Many children who develop infantile spasms also have sight difficulties, and failure to focus and track visually is another indicator. (He actually can focus and does visually track).
They say the onset of myoclonic spasms happens between 4-8 months, which is where we are now. And it all makes me ill. I want answers. I want them to rule things out. To tell me even if that is what Lucas has, that it’s the second kind of myoclonic spasm, "the twitching of one or more muscles, associated with a spike wave EEG. This is usually associated with various benign epilepsy syndromes – benign myoclonic epilepsy of infancy, juvenile myoclonic epilepsy, etc. Children usually grow out of these forms of epilepsy, with little or no ill effects."
I need to calm down and take things as they come. But this panic doesn’t just go away with each appointment. There is always a new fear on the horizon.
And I hate that once upon a pregnancy ago, I titled this category "babies on the brain."