No More Sugar Sweet Memory Making

Yesterday was Easter.

In past years Awesome would have gotten a Chocolate Rabbit and an Easter basket full of candy.  And later in the afternoon we'd have had an Easter egg hunt on the front lawn.  The plastic eggs would have been filled with candy.

Yesterday there was none of that.

Epilepsy has taken all those things away from Awesome--as it's taken away so many other things.

A couple of years ago we discovered that sugary treats like candy, doughnuts, cake, cookies, and ice cream--anything very high on the glycemic index--were seizure triggers for Awesome.  

We were a little slow to catch on.

Awesome's first major convulsive seizure during this, her second round of epilepsy happened about half an hour after eating a doughnut.  It was a status epilepticus seizure that lasted about 15 minutes and had to be stopped with Diastat, and it occurred while she was in Sunday School.  Initially we didn't make the connection to the doughnut.


What we did begin to notice was that Awesome seemed to have an unusual number of seizure issues at church on Sunday mornings.  She would arrive, having eaten breakfast and feeling fine, and by the start of church, she'd be clustering petit mals or having an aura as a prelude to a big seizure.  And so, we'd make a quick exit.

It wasn't until one morning when I passed Awesome downstairs with a doughnut in hand and then, some time later, arrived in the church pew only to have Awesome look up at me with another lop-sided smile (the sign of an aura) that I suspected the connection.   Could the thing that was different at church be the doughnuts?  We rarely had doughnuts at home--maybe two to three times a year--and always in the evening.  (In some ways, it's more complicated than this.  Simply getting up early enough in the morning to be at Sunday school also increased Awesome's seizure frequency--and eventually as Awesome's epilepsy increased in severity it was the getting up early that eventually made it impossible for us to continue to go to church on Sunday mornings....  But initially, it was the doughnuts...)

At first I only suspected, but then as I began to think it through I realized that Awesome's evening seizures also happened to coincide with evenings when she'd eaten a bowl of ice cream.  And once I began to notice the sugar connection, I also observed that Awesome was more seizure prone on the mornings after she'd eaten sugary treats the day before.   Pretty strong circumstantial evidence...

But before we denied Awesome sugar in her diet we felt that we had to more definitely prove that there was a likely cause-effect relationship and not just a happenstance correlation.  And so we eliminated sugary foods from her diet.  And then, after they'd been gone for awhile, we gave her a sugary treat.  And voila, a seizure.  A couple of tests plus the circumstantial evidence seemed to imply more than a happenstance correlation.  It implied a seizure trigger.

And so, sadly, sugary treats--one of the joys of childhood--were eliminated from Awesome's diet. Awesome's been living a nearly sugar-free lifestyle ever since.  She avoids sugary foods.  And we try to keep her eating foods that are lower on the glycemic index.

The glycemic index is a value assigned to foods based on how slowly or how quickly those foods cause increases in blood glucose levels. 

Awesome mourned the change deeply.  Every time she heard the ice cream truck's music in the neighborhood she cried, put her hands over her ears, and ran into a room by herself.  There were a lot of tears, especially in the first year of having no sugar.  You don't really notice how much candy is a feature in holiday celebrations until you have a kid who can't have sugar.

Halloween.  Hanukkah.   Christmas.  Valentine's Day.  Easter.   Not to mention birthdays.

In fact, the more you think about it, the more you realize just how central sugar is in most celebrations and in most expressions of love and caring in our culture.

We celebrate birthdays by making a cake and eating cake and ice cream.  Valentine's Day involves giving our beloved and our children chocolates and candy.  A box of chocolates shows our mother we care on Mother's Day. Christmas is associated with baking, decorating, and giving gifts of Christmas cookies.  Christmas stockings are often stuffed with candy we don't buy at other times.   Thanksgiving wouldn't be complete without pies.  Easter with candy, peeps, and chocolate bunnies for children.  Chocolate gelt and other candy with Hannukkah.  Halloween is a holiday where children knock on neighbors' doors and are given candy.  Class parties at school involve cookies and cake.  Weddings include wedding cakes--a big white one and a smaller chocolate groom's cake.  Parades involve showering children with candy from floats.  Bringing a host or hostess a box of chocolates is a common thank you.  And no one retires or graduates or celebrates almost any major milestone without the obligatory sheet cake scrawled with a message of congratulations and well wishes.  And when we have guests to dinner, we feel obligated to cap off the meal with dessert, whether or not we usually eat it.  Sweet treats are the expressions of caring and love and celebration

And out in the community too, people give your child sugary treats.  Businesses nod with kindness in the direction of our children by giving them candy. You go to the doctor or the bank, and they hand your child a lollipop for being good.  Your child orders a kid's meal at a restaurant and it often includes a soft drink and a cookie, ice cream, or even a snack-sized packet of candy.  Girl scouts sell cookies door to door.  Boyscouts, popcorn treats.

In children's classes--at school or in extra-curricular activities--there are often sugary birthday treats, rewards of candy at the end of class or lessons, and the worst of all--parties or even ice cream sundae parties to kick off the activity for the year or reward the kids at the end of the year.

Awesome, like many other kids with epilepsy or diabetes who can't have sugary treats, has had to learn to politely "just say no" and then to quietly process the loss without letting it ruin her day.  She, like they, has to process being different and not being able to celebrate in that way.

It's a pretty guilt inducing thing to deprive your child of the sugary treats that help form those warm childhood memories.  But it's also guilt inducing to give your child holiday treats knowing that they'll likely cause a seizure (or other health crisis).  No parent wants to deprive their child of pleasure.  But then again no parent wants to cause their child to have seizures or another kind of health crisis.

It's a kind of damned if you do and damned if you don't thing.  Either way you are causing your child pain of one sort or another.

 For the most part, Aweseome's a good sport about her diet in daily life these days.  She simply knows what's allowed, what's not allowed, and for the most part, voluntarily abides by the rules.  (In December she did sneak two cookies on the sly at her niece's birthday party and then paid the price for the indiscretion by having a big seizure the next morning.)   

But Awesome's also clear that her dietary restrictions--including having to avoid sugar--are, to her, at least at this age, one of the very worst things about having epilepsy.  She hates her diet.  And she hates epilepsy for taking sugary treats away from her.  If you ask her what she'd wish for if she could have anything in the world, she says to no longer have epilepsy, but a close second to that wish, if it weren't possible to rid herself of epilepsy, would be being able to ditch her special diet.   

I happen to be one of those parents who doesn't like to be too strict with rules like these.  (I realize that some parents don't have this luxury--especially those whose children have severe nut or other allergies). I've seen strictness backfire.  Years ago before our first child was born, I knew a child who was never allowed to have candy--ever.  Because she could never have candy, she was so obsessed with candy that, the minute she had any money, she'd literally run to the nearby neighborhood convenience store and buy as much candy as she could, and sit and eat it all (she couldn't take it home because her mom would know).   She'd often end up sick from all that sugar.

That which is completely forbidden becomes coveted and sought after and obsessed over.  And so our rules about food have never been absolute.  (Thankfully, I've never had a child with severe food allergies and so there's been no need for absolute rules.)

As a matter of principle, we do let Awesome occasionally go off the rails, so to speak, in regard to her no sugar rule.  On the days when she's already had a big seizure, we relax her diet for the rest of the day.  The rescue drug Diastat often buys her a couple of seizure free days.  And so, in the days before CBD, when she was getting Diastat with every big seizure, it made sense to let her eat sugar during the time she was under Diastat's good graces.   Now that CBD has decreased the severity of her seizures by 90% and she no longer needs Diastat with every big seizure, we've still found that Awesome is sometimes (not always) seizure free for a few days after a big seizure.  It's almost like her brain does a reset.  All the cobwebs are cleaned out by the seizure and so her brain's not as reactive.  And so we still relax her diet for the rest of the day. 

Shouldn't she get SOME reward for enduring a seizure?  And have something to make up for a ruined day and the headache that usually bothers her for the rest of the day?  And so we allow her to have sweet tea and other minor sweets.  And she is allowed to indulge in high glycemic index foods that she usually has to avoid.  So far doing this on a seizure day doesn't seem to have caused any major problems.

On the days when Awesome's allowed to indulge in foods with sugar she savors every bite.  And watching her savor her foods with sugar is one of the happiest things I know.