Thursday

I drafted this for my LEND application, but this is what happened yesterday.

This morning when I dropped Julia at school, her special ed teacher asked me if anyone had identified Julia’s most recent new behavior as seizures. I froze.

Seizures.

I don’t know much about seizures. My thoughts run to a loss of consciousness, tense muscles, convulsions, eyes rolling back, incontinence. Julia has been staring.

About three weeks ago, Julia started staring. As a kid with attachment challenges, looking her parents, caregivers, and friends in the eyes has always been hard. But in the last few weeks, we noticed, first at home, and then at school and during therapy, that Julia was looking deeply into our eyes. She was seeking our our eyes and insisting that we look at her. The behavior lasts from a few seconds to almost a minute, and during that time, she is unavailable for communication; she does not speak or listen. Still, after more than three years of working on eye contact, we were closer to overjoyed than concerned. We engaged in this behavior with her and were waiting to see where it would lead.

A week before the behavior began Julia began taking Adderall CX, a time release version of the medication, which controls ADHD. Julia’s behavior fits a diagnosis of ADHD, and also PDD-NOS. Starting her on Adderall marks the first time that we are using medication to help Julia attend at home and in school.

Last week, I talked about the staring behavior to each of our professionals. No one has any comment or concern. Maybe I am not explaining it clearly, maybe I am leaving something out. Maybe Julia is not doing it so no one can really see what I am talking about. Julia sees a number of professional during her week, each with a descrete speciality. This morning, Julia’s teacher tells me that seizures take many forms and what I know as seizures is only the most severe. And staring like Julia is doing may be seizures.

Getting back home, I call the three medical doctors who see Julia. At each office, I talk to a receptionist who takes my message and passes it to a nurse who will call me later on today. Within an hour, I get a call from one of the nurses, who re-takes my message and will ask the doctor some time today what she recommends that I do. Three hours later, no one from the medicating doctor’s office has called.

Right after I phoned the doctors’ offices, I got on line and wrote a short message on two Yahoo Groups that I belong to, one is Attach-China and the other is China-Adoption-ADHD. The members of these groups are parents, mostly moms, who, as the names suggest, adopted kids from China who have challenges like my Julia.

Within minutes, I get some answers: Julia’s staring could be seizures; an EEG could clear up this question; and someone gives me a few links to websites explaining different types of seizures. I have already found two of the links myself. Within an hour, I have two longer messages from moms whose kids have experienced something like what I am asking about. There is also some information that I am probably not destroying my child’s brain by giving her the Adderall. These moms know where a mother’s worst fears take her.

Later, the med doc called. We are reducing and then eliminating the antidepressant. We may reduce the Adderall. Later still, the ped called. She referred Julia to a ped neurologist. We'll see that doc at the beginning of May.