The Seizure Beast: A Mother's Perspective

His eyes grow wide with terror as his body stiffens into a paralytic state, his mouth turning into a perplexed and focused frown. The epileptic beast overtakes him and sucks at his breath as his pulse races and his skin turns blotchy.

He moans.

Only a few seconds before, he was laughing and playing, enjoying the activity of the moment and the interaction from family around him. Now his fearful eyes search his mother's for help and relief, silently begging her to release him from this entrapment.

The beast in his brain consumes him, surging an electrical storm through his tiny body. Seconds pass, then a pause -- the beast gets distracted for a moment, the little body relaxing as the initial attack subsides.

They wait, peering into each other's faces, knowing what is coming.

"Make it stop, Austin. Make it stop," she commands.

Seconds later the beast roars to life again with repeated waves of spasms, throwing his head forward, splaying his arms in the air, thrusting out his legs, picking his limbs up only to slam them down again against whatever surface is closest -- his head rest, the metal bars on his wheel chair, the hard plastic foot rest -- bruising him in its wake.

His body shakes and shudders under the violent attack.

The spasms might last anywhere from 30 seconds to almost 3 minutes, an eternity to his mother as she watches him gasp for air, eyes still crying out for help, throat releasing moans intermittently as his body allows, his breath shallow as the beast keeps sucking it away.

He begins to turn blue as the beast tries to stifle his breath, sitting on his lungs causing them to seize with the rest of his body.

She lifts his arms up and down over his head, blowing in his face, encouraging him to take a breath.

Fervently she whispers, "Breathe, breathe, come on breathe." She starts to pray, but the words won't form in her mind. She's prayed so many times. She saves her breath, willing it into him.

Locating the phone in her mind, she visualizes dialing 9-1-1.

At last, he inhales a deep breath and exhales a moan, pink returning to his cheeks. His body flinches in the aftershocks as the beast begins its release, retreating to its hideout in the recesses of his brain.

"You did it, baby. It's almost over. Be tough," she encourages, feeling the all too familiar relief wash over her.

He moans and rolls his head to the side anxiously seeking rest and sleep in order to recover.

Her heart hurts for both of them.

Throat Slugs and Throat Scabs

While the smell of garlicky cheese, roasted tomatoes and yeasty dough wafted through the air, the server finished taking their order. They were just finishing up their appetizers, boneless buffalo wings ordered by the 12 year old and fried cheese ordered by the 15 year old and shared by the whole family.

It was a good thing her parents, she and her husband and their two older boys were practically the only patrons in the restaurant on that Sunday after church because her family laughed raucously in the corner of the pizza joint as the conversation took its usual and inevitable turn towards body humor.

The 15 year old had just begun lamenting the fact that sometimes he had problems swallowing after eating dairy which, on that day, happened to be the fried cheese.

"Oh," she said knowingly, "I call that a 'throat slug'. You know, when there's that slimy thing in the back of your throat that you keep trying to swallow but it keeps bouncing back."

She has her family's rapt attention although there is a slight scowl on her mother's face. Smiles leading to laughing and nodding ensued on all the male faces.

"While you are correct that it often occurs after eating dairy," she continued, "it can also be caused by post nasal drip during allergy season or when you have a cold. You are constantly clearing your throat and trying to swallow, over and over again while the relentless ball of mucous sets up residence with no thought of ever relinquishing its hold. 

When I get to my wits end with that slippery critter, I consciously swallow and then quickly jam my thumb in my neck to try to sever the rubber band effect. After doing that several times, you can usually overcome the 'throat slug', and it will slide down your esophagus to its final acidic destination to be dissolved in your stomach. Often this final severing will need to be emphasized by slapping the counter or table with your hand in order to overcome the incredibly gross feeling of having ingested an alien substance.

Or if you are less of a lady than I or not in public, you can just hock a loogie and be done with it.

On another note, if you retire in the evening with said 'slug' milling around in the back of your throat, and you are too tired after going to bed to get up and take care of it (i.e. you stayed out too late in Vegas singing at the top of your lungs at the piano bar in the New York-New York), you will probably wake up in the morning with what I like to call a 'throat scab'. 

This is the throat slug's evil offspring. The 'throat scab' will result in gentle attempts to clearing your throat to vigorous coughing fits and hacking. If you are in public, people will stare at you. You will make repeated attempts to try to melt or burn it out with hot bitter dirt, i.e. coffee or some other concoction such as gargling with salt water since we all experimented with salt and actual slugs on the sidewalk as kids and learned its chemical effects."

God blessed her with a family of boys for a reason...

Deep Breaths and Bitter Dirt

The fog lifted as she forced oxygen into her brain and eyes by taking conscious deep breaths. She just realized she'd been careening down Loop 303 at 74 mph for the last twenty minutes on autopilot. The culprit was lack of sleep for the past two nights due to the baby getting stronger and rolling onto his back in his sleep. "You would think this would be a good thing," she thought, "the stronger part."

However, because of his lack of swallowing efficiently (or swallowing at all), once the baby is on his back, it is only a matter of time before he will cough or choke. She could lie there and try to ignore it, put the pillow over her head so that the sound is muffled, or she could flip the light on, jump out of bed, give him a quick deep suction with what they now affectionately call the "Suction-ator 5000", reposition him on his side with a prop, then plop back in bed and hope he sleeps the rest of the night.

Experience has taught her to choose the second scenario. Otherwise, while she might buy time pretending to sleep and ignore it, she will actually lie awake listening and still have to jump out of bed, but to the sound of choking and vomiting instead. This entails clean up on aisle 9 which is usually less fun in the middle of the night than a quick suction - unless the quick suction happens repeatedly hour after hour (like the last two nights). Then she doesn't even bother turning of the light finding it's easier to just pretend to sleep for a few minutes without the eye strain of a light going on and off.

As she merges onto the much busier Interstate 17, she begins to wonder how many other people are speeding along with her in a sleep deprived stupor. Many people probably prop their eyes open with a couple cups of coffee, however, she has never been able to acquire the habit of drinking bitter dirt. (But add sugar, fat, and ice to that dirt and she can drink it all day, but then she would be drinking meals. She does have the occasional "latte" - 2% milk with a couple spoonfuls of instant coffee and sweeteners to try to wake her up, but this usually only happens when her husband is home to make it for her. Yes, she doesn't like coffee that much and/or she is super lazy...

Swallow Study Fail

She is fully aware that she is driving with her big toe. Left, right, left, right. Slight pressure on the gas, slight pressure on the brake. Walls close in around her as two 18 wheelers flank her lane. She inches forward, grey pavement slowly crawling under her car.

They are now officially late for the baby's swallow study at the children's hospital. A normally hour long drive has taken an hour and a quarter so far with another half hour left according to the GPS. Highway 10 is apparently a big attraction this day after Labor Day. Everyone wants to experience it.

As they pull into the handicap spot in the parking garage, her mind frantically runs through the list of things she needs to grab in order get to the appointment 30 minutes late. Insurance cards, suction machine, diapers and wipes - just in case. The baby is remarkably calm and seems to sense he is about to go for a ride.

He almost leans forward when she reaches an arm under his neck and another arm under is legs. He is getting heavy for her. At 3 and half years old, 38" and 30 pounds, he may seem just right in the height to weight department, but hoisting his dead weight, while still doable now, looms ahead as another challenge. If he could just lift his head and/or lean forward, wrap his arms around her neck - anything. She hopes for and will take anything.

They rush into the hospital, up to the check-in desk, then around the corner to another registration desk, and then on to the final imaging desk. Three desks. At the third one, the baby has a seizure, gets his arm band identity bracelet, and gets ushered to another waiting room. They are told they would have to be squeezed in due to the late check-in. She silently and sarcastically thanks Highway 10 traffic and watches the Duggers on the little TV in the corner.

As the Duggers arrived in China, one of the staff calls the baby's name, and she proceeds to wheel him into the imaging room. As the arm band, name and birthday are checked, she is asked to place his 30 pounds in the Tumble Forms feeding chair which is conveniently located at almost shoulder level.

The chair only has a lap belt. No chest support, no shoulder strap, and nothing to support his head. He slumps in the chair and his head slips and bangs on the radiation machine. They had her place one hand on his chest for support and another hand on top of his head to keep it steady and facing in the right direction. His shoulders inch forward, his heavy head tilts back.

Needless to say after one spoonful of the pudding thickness, he failed the test. A large portion of the  bolus had dropped straight into his esophagus, but a small portion slipped into his airway. The back of his mouth and throat showed no signs of trying to control anything. Within 2 minutes, the staff shutdown the study and sent them on their way.

She drove up to the preschool and turned of the ignition. Staring straight ahead, exhausted from getting up early and the stressful morning drive, she wills herself to stay tough. She will not crumble today. She will not give up today.

She forces herself to accept the silver lining, that the result of the study gives clarity to a crossroads they had come to in his treatment. She now knows they will back off from the possibility of feeding by mouth and focus on the emerging and immediate need to get his increasing seizures under control. Hopefully, he will qualify for a treatment called a Ketogenic Diet. Hopefully. Because without hope...

She sighs.