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School Days and Seizures

9 May

This is the sixth installment of the story of our journey with Maura…

So, Maura turned three and started preschool, as we also went from doctor to doctor trying to figure her out.

I think I’ve made things sound a bit doom and gloomy – it wasn’t.  Oh sure, I was depressed at the time (as in “therapist and bottle of Prozac, over-shopping to fill the emotional hole inside me” depressed – which is another story I’ll get to because it is important to share I think), but really, despite everything being thrown at me, I could see the bright side of things.

My daughter was pretty healthy.

My daughter was very happy.

I had three other kids who were fantastic in their own special ways.

I had a husband who loved and supported me, who loved all our kids, and who had my back always.

I had a great group of friends, and made some more new friends (yes, even through the preschool – yep, I made my own dang club, thank you – it was called “Oh, your kid is in my kid’s class?  Wanna go for coffee?” – we called it cheap therapy.  And it worked.)

And the first year of preschool, Maura had the most fabulous teacher.  Really, we were spoiled.  She was the teacher with all the experience, all the passion, all the heart, and ALL the patience.  Maura loved going to preschool, and Miriam loved Maura going to preschool because it meant she got to tag along with me to the coffee shop on her day off of kindergarten every Wednesday, where she was petted and spoiled by all my friends and shoved a chocolate muffin into her face (and hair, and clothes and seat and floor.)

Life at this time became less about the Unknown and more about Accepting.  When Maura first started Early Intervention, I would look around desperately for a child who was less able than her.  Not because I wished ill upon another child.  Not because I was playing the “Worse Off” game.  But because, I guess, I was looking for hope, proof that she wasn’t as far behind as I feared.  By preschool, I had reached a level of acceptance that most kids would be ahead of her, even in the special education world – and I was right.

At this time, her delays were becoming more significant, more visible.  But she still had those scattered skills that would make you say “How can she do THAT but not THIS?”    She took forever to learn anything it seemed.  I joked that it was like living with a very tiny Alzheimer’s patient, for you’d have to repeat things about 800 times and she still wouldn’t retain it.  I spent eight months teaching her the sign for “more” because she couldn’t say it.  By the time she could sign it, she could also say it.  Rendering the sign useless.

Yes, we went down the sign language route.  You have to.  It’s part of the “you must try everything” clause when you sign up for special needs parenting.  It doesn’t matter if your child can’t physically make the sign, or has motor planning issues that means it takes weeks for her to be able to manipulate her fingers into the correct formation – you MUST try sign language.

The kicker is when you spend all that time doing this only to have the elementary school go “Oh, we don’t have time for signs.”  <headthunk>

But that’s also another story…

Where was I?  Oh, slow learning.   Very slow learning.  And practically non-verbal.  Slightly cross-eyed and the balance of a tiny drunk.  I kid you not, Maura could be walking, then just veer off into a wall.  Or fall over.  Trip over her own feet.  She couldn’t figure out how to pedal a trike, she couldn’t sit on a swing and balance herself  – if you tried this with her, she ended up with a face full of mulch.  Now couple that with her need to try everything her siblings were doing and watch Mom have a heart attack!

We decided to try hippotherapy – which is basically occupational therapy on horseback.  I don’t know how it works.  Or why.  But we saw improvements with Maura, both OT-wise and PT-wise.  Plus a little speech.  Maura loved riding the horse (well, after her initial sheer terror of it all.)  We’d go every Friday, rain or shine, wind or snow, as it was done in an indoor arena.  I’d sit in the heated observation room, and would read or crochet or talk to a friend on the phone uninterrupted.  Ooo.  Ahh.

It was December, 2007.  Maura was four now.  We went off to hippotherapy as usual the one Friday, but with Miriam in tow for a change.  Mim had woken up that morning with a laundry list of physical complaints – what she really wanted was to not go to school.  I made the executive decision to let her have a mental health day off, and she tagged along with us to the therapy appointment.  I bundled Maura up in her snow pants, coat, hat and mittens and waved as she went off on the horse.  Miriam found something to play with, and I called a friend to chat.

The therapy session was supposed to be like 45 minutes.  Twenty minutes into the session, as I was talking to my friend on the phone, I looked up and said “Oh that’s weird, Maura’s laying down on the horse.”  I didn’t think too much of this, as they’d have Maura sit sideways or backwards on the horse.  I watched as the therapist helped Maura sit up, rubbed her back, and then the whole crew – therapist on one side, aide on another, and horse trainer leading the horse – turned around and made their way to the exit.

My Spidey-senses tingled.  “I’ll call you back…they’re bringing Maura in for some reason.”  I hung up the phone and then the therapist came in, carrying Maura.

Something was definitely wrong.

“Does Maura have a history of seizures?” she asked as Maura laid limp and greyish in her arms.

“No.”  I may have also said “Oh shit.”  Or just “shit”.  Maybe I thought it.  But whenever I remember this scene, the word “shit” is involved.

The therapist explained how all was normal and then suddenly Maura fell back and shook for five to ten seconds.  How she was glad the horse trainer (her husband) was holding the horse’s reigns, as the horse was spooked by what happened.  Their horses were unflappable, they dealt with screaming crying tantruming kids all the time.  For the horse to be spooked, well, that meant something.

Meanwhile, Maura is now limp in a chair.  Not unconscious, but not right at all. The therapist described what happened…

…and that’s when seven year old Miriam piped up.  “Oh, she did something like that last night.”

Two pairs of adult eyes turn to her.  “What?”

Matter-of-factly, Miriam says “Yeah, last night, when we went to bed, Maura fell over and shook, then her eyes popped open and she said “Oh!”.”

I may have cursed some more.  The therapist said it sounded like a seizure, and as she had more experience than me with them, I went along with it.  I hefted Maura up in my arms to go to the car.  The therapist asked if I’d call the doctor, and I said “Oh forget that, I’m going straight to the office!”

See, I had this fantastic pediatrician who was always available when something came up.  I called the office and told them that we think Maura just had a seizure.  It was noon.  It took 30 minutes to get there.  They said they could see me at 1 pm, when the office re-opened after lunch.  Cause they were awesome like that.

As I drove, I first called Josh, who was out of town on business.  I told him what happened, that we were headed to the doctor’s, I’d keep him posted.  In the meantime, he started looking for immediate flights back home.

Then I called my friend, who I’d been on the phone with when all this happened.  I explained to her what happened and how we were going to the doctor’s.  The funny part is when I finally got home, I saw the email she sent to our group of friends, and how amazed she was at how calm I sounded on the phone.  It made me laugh because I was internally freaking out, but I had two girls in the car, had to drive – I had no time to freak out just then.  But I did have time to hit McDonald’s for a large Coke, because I knew this day would need more caffeine.  As I pulled into the line, a little shout of “Yea!” emerged happily from the back seat.  Maura was awake and happy and normal looking.  Yes, I got her a happy meal.

At the doctor’s, Maura seemed normal enough.  I explained what had happened, and how Miriam said it happened the night before.  Again, two pairs of eyes focused on Mim, and I told her – the girl who was prone to exaggerating – to just tell the truth about what happened.

She repeated her story exactly.  That Maura had been sitting up, then fell over and shook, then woke back up.

The odds of that being it were lowering by the second.  The fact that the therapist called it a seizure made him take it seriously.  The fact that the horse spooked even got the doctor’s attention.  The doctor made that ‘hmmm’ noise – the one doctors do when they’re thinking.  I’d been hoping that the seizure-like thing was just a reaction to the very strong antibiotic Maura had just started.

It was decided that Maura was fine for now, but I should make an appointment with the neurologist.  The pediatrician offered to let me call from his office if I didn’t have the number.  I assured him it was fine, I had it, and I’d call from home.  Which is what I did, only to be told he was at a conference and was gone all day.  But, the neurologist proved his own brand of awesomeness by calling me two hours later from the conference, having gotten the message. After getting off the phone with him, I was reassured of Maura’s well-being and making an appointment for an EEG the next week.  I then called Josh to spread the reassurance, that he could wait until his already scheduled flight out the next morning, instead of scrambling for a flight that moment.

I still remained calm.  But Maura did sleep in my bed that night so I could watch her at every moment.  I read up on EEG’s, and how it was normal not to catch any seizure activity during a shorter one.  I prayed this was all a fluke, a one-time thing, because at the time, seizures were near the top of my “Please God, don’t let her get this!” list.  I kept an eye on her,  mentioned what had happened to the preschool and told them to keep an eye on her, and waited for the EEG.

The day of it, everything went smoothly.  Maura let the nurse mess with her hair, stick things on her head while she watched Blue’s Clues.  She played along with Blue’s Clues as the EEG did its thing.  To me, she looked normal.

So afterwards, when all the wires were taken off and most of the goo was scrubbed out of her hair, as I sat in the exam room with Maura and the nurse practitioner talking with me, I didn’t expect what happened next.  The neurologist walked in, walked straight over to Maura while saying “Well, the EEG showed she’s having seizure activity right here.” and placing his finger on a dot on Maura’s head.

I looked at him and said with complete surprise “Really?  But she always has normal test results!”

We actually did laugh over this.  For two years, they had tested her for everything, and for two years, her tests were all normal.  I was now in new territory.

The doctor explained that between the one definite and one possible seizure, plus the seizure activity, Maura would need to be on medication.  If she went a full year without a seizure, we’d wean her off.  We were to come back in six weeks to see how things were going, and then he was gone.  The nurse practitioner started giving me supplies – a book to read about childhood seizures, regular medicine to tie me over until I got the prescription, the emergency medication, a case to hold said emergency medication that I would need to carry around at all times.

My first thought was “I’m going to need a bigger purse.”

Then she explained how the “epi pen for seizures” wasn’t really a needle…it was gel administered rectally.  And there was a dvd to watch on how to administer it.

And I thought “Oh, forget this!”

But, there was a novelty to having something with Maura that had a name, that people recognized, that I could do something about to inform others of it.  I went and made a pamphlet on what to do in case of seizure for the classroom, and shared it with the adjoining preschool program that Maura’s class shared a building with.  I read the entire book on childhood seizures.  I ordered a medical alert bracelet.  I spent too much money on a bigger purse. I prayed for the best, and kept one eye on Maura at all times.

About two weeks after we started her new medication, I said to Josh “I think Maura’s talking more.”  She had demanded milk in her cereal.  This had never happened before.

Then her teacher reported that Maura could pedal a trike and sit on the swing unaided.  She also, for the first time in 18 months, went over and got her schedule when asked the first time.  The teacher agreed that Maura seemed to be using more words.

I looked up the area of the brain that corresponded with the dot on Maura’s head that the doctor had pointed to.  The area?  Memory and motor planning.

Suddenly things began to make sense.

We went back to the doctor for the six week check-up.  The nurse practitioner was surprised when Maura said hi back to her.  I told them how Maura suddenly made leaps in her development, ones even they could see.  They were impressed.

What should have been the worst thing in the world turned out to be a blessing in disguise.  Oh sure, it would have been better if Maura never had the seizures at all.  But we had at least one answer, and one solution.

I take what I can get.

Maura, age four

Maura, age four

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3 Responses to “School Days and Seizures”

  1. Renee Anne May 9, 2013 at 10:09 am #

    I really do love hearing about Maura’s story.

  2. Rachael May 9, 2013 at 5:29 pm #

    I remember when this was all happening. Ah, Maura – what a journey you’ve had with her!

  3. specialneedsrealitytv May 9, 2013 at 9:50 pm #

    There are ways our story is similar to yours. When my son was about 4, I thought he was having absence seizures and the eeg showed no activity. A year later, he had a tonic-clonic and after that was diagnosed with partial seizure disorder. It also took me forever to get the right dx.

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