Zara’s Visit with Neurology

Today it’s been two weeks since Zara had her follow up appointment with the neurologist as Johns Hopkins.

It is difficult to put into words just how relieved we feel since that visit. In reality, nothing changed.  But sometimes we don’t really know how much we need to hear words from someone with knowledge and experience until we receive them.

It is easy to recap the visit in words.  Zara saw the same neurology fellow, but a different attending.  I loved that he was very, very direct.  There were no minced words, no vague drawn out “wellllll …” phrases, and no questions hedged around.  They both checked her reflexes extensively and found them equal bilaterally so no sign of neurologic damage there.  They listened to her development and were pleased.  They watched the videos we’ve taken of posturing she’s done since her hospital stay.

In his words, “This is NOT infantile spasms.  We can tell that from the first thirty seconds of the EEG and from her normal development today.  At this point, we can watch and wait.  Some babies have the physical output of seizures without significant EEG changes and sometimes they grow out of them and everything stays benign. (Of course we are hoping this is the category Zara belongs.) If anything changes … the intensity or frequency of the spasms, a delay in her development, or even that the spasms concentrate to one side (currently they flip flop and don’t look the same), then you need to call us right away.”

“How long will it be until we get in?” David asked thinking of the several month wait time we’d been told initially.

“She’s on our high acuity watch list.  She’ll be in right away.” (Obviously she’s not high acuity, just being watched that carefully.)

I felt such an enormous relief to know that we could actually watch something on the outside (her development) and have a accurate clue about what was going on inside.

In his very frank, decisive manner he continued.  “These movements that you are concerned about and that we are concerned about are not normal baby movements.”

Until that moment I had no idea how much I needed to hear him say that.  You know how it is, in our well-meaning way, moms try to comfort each other by saying things like, “Oh, all babies make wierd movements,” or “I think that’s just kind of her,” or “I didn’t see anything.” I wasn’t at all offended, just beginning to feel a little muddled.  After three babies, did we still not recognize normal and abnormal?

I think if there was one thing I’d like to tell new moms it would be this.  Trust your intuition.  God made you a Mother and He gave it to you for a reason.  You might not have it right away.  For some, it comes more readily than others.  But you will develop it in time.  It doesn’t mean you’ll never be wrong.  Goodness knows I took Adam to the pediatrician countless times for, “I think it’s just a virus,” visits. 🙂  Hey, who knew viruses shed themselves in the strangest rashes ever? It doesn’t mean you’ll never need input from others because sometimes we lose our perspective because we are too close to the situation.  But when you get that feeling deep inside, don’t be afraid to act on it.  My nursing instructors used to say, “There is no such thing as a dumb question.”  Well, I’m pretty sure there is no such thing as a dumb pediatrician visit.

For us, the clue is in the way Zara’s motions repeat spastically.  Bigger than that is the way it interrupts what she is doing.  When her arm jerks to the side and she goes on playing with the other, I watch to see what will happen, but I don’t feel anxious.  It’s when she jerks, or her torso spasms, interrupting what she was doing, that I watch and hold my breath, hoping this is not the time benign gets shattered.

Meanwhile, Early Childhood Development has still not been here.  First her referral got lost in the paperwork, then she finally got re-found when I called and they made an appointment over a month out.  Thirty minutes before they were supposed to show up they called to say the teacher slipped on the ice and had to go to physical therapy so they’d call me back the next day to set up another appointment.  Meanwhile, I’d asked Neuro if she really needed to see them since she was learning so many new, age-appropriate things.  They still said yes.  Apparently, having another set of hands and eyes evaluating her to make sure we’re not missing any muscle issues would be a good thing.  It’s been a week since the teacher slipped on the ice and they finally called, with another appointment several weeks away.  I’m thinking by the time they get here, Zara may just walk to the door and say hello to welcome them in. 🙂

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