Tuesday, May 10, 2011

Annoyed at the Neurologist and Other Tails

Ripe with PMS, bloated, irritable and pointed toward a sour attitude regarding the day's activities, I sat down for a thick slice of chocolate cake. I sat down, that is, until I got up. The write-up of my son's most recent neuropsych evaluation lay before me on the kitchen counter, and I didn't want to forget to bring it to the neurologist visit later in the day. So I took it to the car...

...only to find a baby sparrow stuck to one of those super sticky ant-catchers that Terminix had placed in our garage. The bird flapped in a wild panic, and with each flap, the sparrow further secured itself to the adhesive.

Why? I thought. Why does this kind of crap happen to me? With ten minutes and a chocolate cake all to myself, of course there is a baby sparrow adhered to an ant trap in my garage.

I place the glued-on sparrow into a shoebox and bring it to the vet. Something about warm water and Skin-So-Soft, and the vet goes to work. "No, I can't stay," I say, irritated that I have replaced the consumption of chocolate cake with a trip to the vet for a bird that doesn't belong to me, "I have to pick-up my son from school. Let me know how it turns out."

At the school yard, my son notices an ant scurrying free, unadhered, wild on the pavement. "I must save it!" he says, believing the pavement must be too hot for its feet. I'm not lost on the irony of the unstuck ant. It takes him a good two minutes to finally catch the ant between his cool-salty fingers. He drops the ant into the long blades of grass saying, "Goodbye little ant. Be free."

And so we take an hour's trip to the neurologist. What did I learn at the neurologist's office? Absolutely nothing.

My son had a "seizure-like" event about a month ago. "Early April," I say.

"Late March," she says, scrolling through the electronic chart. "Right? I know I'm right."

"Fine, late March."

"Here it is. March 24th is when you called the office."

"Then it was the 23rd."

"It was."

Good, glad that's all clarified. Not glad that was the only thing clarified.

The neurologist wasn't sure my son had a seizure because she wasn't there to witness it.

"Well, he was unconscious," I said.

"How do you know?" she asked.

"Because I was there," I said in my outside voice, followed by "idiot," with the voice between my ears.

The chick with all the letters behind her name and the academic training to back it up was talking down to me, a pedestrian in her world. An ant that needed saving, that needed to be put back where I belonged.

"Let's say you're right," I tell her. "If it wasn't a seizure... what was it?"

"Behavior," she tells me. Behavior. As though my son "behaved" unconsciousness, a fake-out.

"I'd give you behavior," I say, "except that in the arsenal of my son's behaviors, feigning unconsciousness isn't part of his weaponry."

"It's possible then, that we don't know. We may never know," she says.

"Considering he's done this twice--"

"Only twice," she says.

"Twice," I say. "Aren't you curious?"

"Sometimes kids have unexplainable behaviors."

And it was left at that. Not her department. She performed her reflex tests and shined a light in his eye, and we packed up our things to go home.

We're either going to be one of those families you see on 60 Minutes who kept searching and searching for answers for their child, and due to their own tenacity, they find the answer or, I thought, we're not.

The fighter in me wants to be that family on 60 Minutes. I want to be that mom that comes on and says, "We went to see every single specialist you could possibly see and had absolutely no answer until one day..." And then I would go on to tell about this wonderful, new, strange discovery that provided us an answer, and that could provide an answer to hundreds and thousands of people. These are the fantasies of moms like me.

But the truth is, the reality is, the probability is that will never be the case.

As we drove home, the seagulls flew over the blue waters of Lake Michigan, and I thought,

There are no answers,
only birds on a journey
against a horizon of infinite possibility.

Be free, birds.


  1. It really ticks me off just how nonchalant and cavalier doctors can be. I don't know if it's because they've become de-sensitized, considering all the things they see, but at the very least the doctor should've seen how concerned you were and ordered an exam - SOMETHING - to help make you feel better (at the very least). It's true that we (parents) are really the experts, and unfortunately it's up to us to find out what's really going on. I would suggest seeing a different neurologist, if you can. If not, then call that neurologist's office and DEMAND an exam, a test, something to put your mind at ease that there isn't something more serious going on with your child. It's just truly sad when doctors stop caring...

  2. Wow.. My kid's neurologist ordered an EEG for our son based solely on the fact that I thought he made a strange jerking movement that we thought could possibly be a seizure. Thankfully turns out it wasn't, but I think we are just extremely lucky that our son's doctors take us very seriously as parents and he listens to our concerns. I can't believe you are having such a hard time with a specialist. Some of them just don't care as much as others I guess.

  3. Thanks for your comments! Actually, my son did have an EEG after the "seizure-like" event that was normal. A little history, my son has had 4 EEGs. Two have been normal, two have been abnormal. However, the neurologist has dismissed the abnormal EEGs saying that for kids with a developmental delay like his, they are considered "normal."
    I don't know. After writing that post, I'm thinking about taking his entire file to a different neurologist entirely for a second opinion. Maybe it's not being interpreted the right way.
    I'm not saying he has had a seizure, but there IS something happening. I want to know what it is.
    Maybe it's not neurological, and that's why they're not finding anything. I want to find out, though.

  4. Not knowing is a very hard place, you know your child best, don't dismiss your gut. Sometimes we have an intuition, as mothers and parents that isn't explainable.

  5. This might be the most intense and beautifully written piece you've ever published for us to see. Wow.
    For the record, I've been to that neurologist -- she is legion. And also for the record, it took FIFTEEN years for THEM to figure out what was perhaps causing Sophie's seizures. And there's nothing to do about it. I'm one of those birds, I guess, still flying.

  6. OMG you are amazing
    I love this post
    I loved the sweetness of you and your son ( regarding sparrow and ant )
    must find your blog

  7. Excellent post. On every level.

  8. Beautifully written, heartbreakingly frustrating! I have been in similar shoes with a neurologist. We "fired" the best in our area because of the "oh, yeah, kids like yours just do those sorts of things" attitude. We found a fabulous doctor who trusts our judgment and insights and observations. He guides us and informs us but NEVER treats us with any disdain. It helps that he adores our son, too! I say keep looking until you find a doctor who will be a part of the team instead of an island unto him/herself. Good luck!

  9. I had a shit week with our neurologist too. It's actually the first provider we've had that is difficult to work with, for which I am thankful it has not been more. Find someone else if you are geographically located in a place where that is a possibility. Good luck. Fly mama fly!

  10. Different neurologist. DIFFERENT NEUROLOGIST!
    We brought our son to a neurologist when he was five because a few times day I would catch him "stopping" for about 10 seconds here and there -- he moves constantly, fidgets and sings, so "stopping" just looked *wrong*. I was the only one that noticed these little episodes, well, me and the EEG. There was some indication of abnormal "sharps", every few minutes during that scan. Neuro put little guy on anti seizure meds and those absence seizures have stopped.
    Best advice I ever received: You're the mom. Trust yourself.

  11. Different neurologist seems to be the standard answer here. Mine advice is the same, but just a little bit different. Just a drop.
    My daughter sees a neurologist, has since she was at intake for EI and we mentioned staring - which we thought was primarily task avoidant or "zoning out". Primarily this happens when she is constrained to places, tired, or a combination of both. Which she still does. Immediately, she was referred for a sleep deprived EEG, which came up clear. The staring continues, as do other stims. I'll probably want to do a video monitered EEG as some point. I do not think she'd handle it at this point.
    Here's the thing. I've been around my share of neurologists. I've BEEN on seizure medications. I've experienced the side effects. I know that sometimes the best answer they have is I don't know. And the only answer that sleep deprived EEG probably gave them is that she didn't have any seizure activity "right now".
    If you really think your son had some sort of event, trust your gut. Go to a doctor that does too. And research testing and treatment. Because it matters. To you and to your son.