Due Diligence at the Start of a School Year

It's that awkward time of year for epilepsy parents, when the due diligence of responsible epilepsy parenting requires that--before classes and practices start--we inform teachers, coaches, and all those entrusted our child's instruction and care in schools, sports, extra-curricular activities, etc. of the fact that our child has special medical needs.  We let the teachers, coaches, etc. know that our child has epilepsy, tell them what seizures look like for our child, and instruct them as to what they should or shouldn't do if a seizure should occur while our child is under their watch.

After explaining the situation and my need to talk to Awesome's teacher before the first class, to a dance school administrator, she suggested that I send an email to the teacher and copy both her, as Artistic Director, and also the Administrative Director.  Here is the email I sent to Awesome's new theater class teacher ahead of time.

It's a longer note because I needed to convey a lot of content.  After all, there are more than 40 different kinds of seizures.  Each child's epilepsy is unique to that child, and the care needed is also unique to that child.  So even if the teacher is experienced with epilepsy (most aren't), chances are that that child's case--what the seizures look like and what care is needed during a seizure--would be very different from my child's.  And hence the need to convey very content to my child's teacher:

Hi [teacher's name],

I have copied this note to [other's name], my husband David, and  [another's name].

Our 12 year old daughter Awesome [last name] will be in your Acting Class for 6th to 8th grade students on [day of week] at [class time].  This will be Awesome's 3rd year in [dance school's name].  She loves these classes, and they've been a very empowering experience for her during a very difficult, challenging time in her life.

I need to let you know ahead of time that Awesome has a few special medical needs.  These have not presented a problem in past classes, but they will require a few special accommodations at the end of the year, during play rehearsals and the play itself.

Awesome has intractable epilepsy, which means that she has seizures that are not controlled with antiepileptic drugs (AED's).  One third of those with epilepsy have seizures that can't be controlled with drugs.

Awesome has two kinds of seizures: little seizures and big seizures.  Her little seizures last from 3 to 7 seconds.  Typically, her eyes roll upward, her facial muscles relax, she looks dopey or spaced out for a split second to a few seconds, and then she's back to normal.  When these seizures happen, she's in an altered state of consciousness--she can't hear what is said to her and she can't respond.  If she's walking, she continues to walk, but slows down.  If she's talking, she stops mid-sentence or in the middle of a word.  Sometimes she knows exactly what was going on before she had a little seizure and just continues on; sometimes she'll say something like, "OK, then" or "Alright then" and then will gather her thoughts, reorient quickly, and go on.  These are the seizures you are most likely to see.  On a good day she'll have just 2 to 15 of these a day.  On a bad day, she can have as many as 60 that we can see.  These little seizures are no big deal and should be treated as such.  Ignore them.  In a less public setting we'd say her name or touch her gently on the arm as a way of bringing her out of them more quickly.  Unless you see her get caught in one of these for longer and see her really struggling to come out of one, you don't need to do anything.  Don't draw attention to her.  But it helps to be aware of them because they look odd when you don't know what they are.

Awesome also has big seizures--convulsive seizures.  She's never had one while at [the dance school] classes or performances.  It's a low risk time of day for them, and they happen they're typically early in the morning, about once every 1 to 3 weeks.  So I wouldn't expect one to happen while she's in class.  However, I want to describe what you would see and what we would need to do, should one occur.

The biggest tip off to a big seizure is that Awesome's eyes and head turn upward and to the right; her body often follows this turning too, so that her trunk twists to the right.  And she then falls to the floor.  It's also possible (though uncommon) for her seizures to start in other ways.  So if you ever feel she's acting oddly or having a hard time talking--or even talking nonsense--please let me know immediately.

I will be sitting right outside the classroom watching during every single class all year long.  At the first sign of a big seizure, I would immediately come into the classroom and try to ease her to the floor, and give seizure first aid as instructed by her neurologist.  Please do NOT call 911.  The main thing you would need to do is help me keep everyone calm, not make it a big deal, and help me get her into as private a situation as possible without everyone staring at her.  (Either by removing her to behind the piano, or by clearing the classroom for a few minutes.  Whatever seems best.)  Seizures last only 30 seconds to 3 minutes these days.  I will be turning her on her side, timing the seizure with my watch, and administering oral medication.  At the point at which the seizure is over, Awesome will fall asleep.  If I see any signs of a problem--and I know all of them--I would ask someone to call 911.  Calling 911 when I don't need it, makes for a circus.  And unless I feel transport is needed, I will refuse it as her neurologist has instructed me to do.  In the event of a seizure that would last over 5 minutes, I would need to administer rectal rescue medication, and in that situation would need help creating privacy.  My goal with any big seizure that might occur at [the dance school] would be to maximize privacy and minimize disruption to [the dance school's] class(es).  And to keep everyone calm.  I've handled over 75 of these big seizures.  I know what to do.  I just need the calm and space to do it.  And at some point, may need another set of strong arms--maybe one of the dads who is around--to help carry her to privacy as she recovers.

Most likely Awesome, just like in the past two years, will not any big seizures while at [the dance school]this year.

The only other thing that I ask is that Awesome's need for special accommodations be respected during play rehearsals and play performances at the end of the year.  This means that I need to be close by, watching the rehearsals and performances.  It may also involve asking for permission for someone--some we both feel comfortable about having that responsibility--be allowed access to backstage when Awesome is there during rehearsal and plays.  Awesome can't be alone and unaccounted for.  Someone needs to know where she is and that she's not seizing at all times.  We can talk about what might work as the year goes on.  She can't be sent to the bathroom alone without noting the time she left and keeping track of the time.  Knowing where the pick for the safety lock on the bathrooms is, would also be helpful.  Keeping her safe means ensuring that she is supervised closely.

Finally, Awesome wears a special watch that detects convulsive seizures, the Empatica Embrace.  For it to work, she must keep her cell phone within Bluetooth distance at all times.  So she tends to wear it in a cross shoulder purse and keep it on her person at all times.

Thank you for having Awesome in your class and for the opportunities [the dance school] offers her to be a normal 12 year old doing normal 12 year old things.  It's empowering for her.  Epilepsy can be a very stigmatized, stigmatizing, misunderstood, and isolating condition.  Awesome is a very normal, energetic, happy, social, bright, neuro-typical, and engaging kid.  She just happens to have intractable epilepsy.  We are trying to normalize her life and experiences as much as possible.  If you have any questions or concerns, please let me know.