Awesome's Story, Part I: 2004-2008

Whenever I visit an epilepsy blog, before reading the blogger's thoughts, I just want to know the Story.  And so, I guess, it's only fair that this blog also tell....the Story...

And so, here it is...

Our daughter Awesome was born strong and healthy after a very healthy, uneventful pregnancy and birth.

She adapted to life outside the womb quickly and easily.  She breastfed well, quickly plumping up into a healthy, happy, chubby baby meeting all her developmental milestones on or ahead of time.  Nothing in her first 2 years and 5 months would have led us to believe that she'd develop seizures or epilepsy.

Before Awesome had her first seizure, I'd never seen a seizure.  In fact, I was so completely uninformed that I didn't even know Awesome's first seizure was a seizure until it had gone on for 10 minutes.  Even then I had to be told, "Awesome's having a seizure."

Awesome's first two seizures were both what is called status epilepticus--a medical emergency in which the seizure doesn't end but goes on and on and on.  Most seizures last just 1-2 minutes and stop on their own.  Status epilepticus seizures are medical emergencies.  This is because, if they go on long enough and are not stopped, they can cause brain damage and even, eventually, death.  And generally speaking, the longer a status seizure goes on, the harder it is to stop.

Awesome's first two seizures occurred a month apart, and each one happened after exposure to the herbicide Round-up.

Her first seizure was more than an hour long.  She'd been seizing for about 45 minutes when Awesome was finally successfully given IV anti-seizure medication in an ambulance en route to Children's Hospital.   Once at the ER, she continued to seize for half an hour more despite having been given 3 doses of an IV anti-seizure drug.  Finally, with her first dose of a second IV anti-seizure drug, Awesome stopped seizing.  The drugs rendered her unconscious for several hours.  She was given a CT scan (normal), an EEG (normal), admitted to the hospital for a day for observation (nothing much out of the ordinary to see), and then sent home.  Before she was discharged we were given and taught to use Diastat, an emergency rescue medication for status seizures.

A month later, after a second exposure to Round-up, Awesome had a second status seizure--this one about 25 minutes long, ended at home with Diastat.   Near the end of this second seizure Awesome vomited and, unknown to anyone at the time, aspirated (breathed things into her lungs that didn't belong there).  On the advice of the neurologist (she'd given me her card at the hospital & told me to call if there was a problem)--who'd stayed on the phone with me throughout Awesome's seizure and who'd told us to call 911--Awesome was again transported via ambulance to Children's ER where, this time, she was evaluated, declared to be fine, and sent home again.

Over the next five days Awesome became very ill.  Three days after her second seizure, Children's ER diagnosed Awesome with pneumonia.  Two days after that, on our third trip (in five days) to Children's ER, she was diagnosed with pneumonia with effusion (fluid around her lungs); Awesome was immediately admitted to Children's Hospital's pulmonology unit where she would be hospitalized for the next 18 days.

For the first 14 days, Awesome's condition continued to decline despite treatment with one strong IV antibiotic after another.  Nothing seemed to work to stop her necrotizing (flesh eating) pneumonia, nor the progressive damage it was doing to her lungs.   She soon developed pneumatoceles--painful pockets of air where her lung tissue had once been--and then, to the alarming surprise of the treating hospitalists, a lung abscess.  Awesome's official diagnosis was, at this point, "community-acquired, antibiotic-resistant, bacterial pneumonia."

During this time, we--Awesome's parents--began to wonder about the possibility of aspiration pneumonia.  After all, during her second seizure we'd seen Awesome take a deep breath in the midst of vomiting.  We, Awesome's parents, also began to contemplate and research (through access to online medical studies) the possibility that Awesome's two seizures were the direct consequence of her exposure to Round-up.  Medical studies we found confirmed that aspiration pneumonia was a common consequence of Round-up poisoning. We mentioned this to the hospitalists, and asked if it were possible that Awesome had aspiration pneumonia.  What if perhaps this was the reason she wasn't responding to all the antibiotics?  Perhaps she needed a different kind of antibiotic--one effective not against the aerobic bacteria of normal community acquired bacterial pneumonia, but one effective against the unusual anaerobic bacteria present in aspiration pneumonia?  Although the hospitalists listened respectfully to our thoughts, they told us that Awesome's pneumonia was in the "wrong lung" for aspiration pneumonia and besides, aspiration during a seizure was very rare--common only with the developmentally delayed (Awesome wasn't) or with those were impaired from drug/alcohol use.

As one high-powered, broad-spectrum, last resort IV antibiotic after another failed to stop the progression of lung damage, we repeatedly repeated our request that they consider the possibility of aspiration pneumonia despite all the ways it didn't fit.  After all, nothing was working.  What could trying the antibiotics effective against aspiration pneumonia hurt?  But her treatment team didn't want to try the drugs effective against aspiration.  In their minds the possibility that Awesome had aspiration pneumonia was a very remote one.  And so every time an antibiotic failed, they'd simply move on to the next antibiotic on their list of antibiotics for community-acquired antibiotic-resistant bacterial pneumonia.

Twice Awesome was turned over to the Children's Hospital's surgical team in hopes that they'd operate in order to get a bacterial culture from her lungs.  If only the bacteria could be identified, then the doctors might be better able to find an antibiotic effective against the particular bacteria in her lungs.  So long as they didn't know what that particular bacteria was, they could only experiment blindly and try one antibiotic after another--mostly, it seemed, unsuccessfully.  Both times that Awesome was turned over to the surgical team, the surgeons carefully considered the request and then refused to operate.  They were afraid of causing a life-threatening lung collapse.

A crisis ensued after a CT scan two weeks into her hospitalization showed that Awesome's lungs were continuing to be slowly eaten away by a necrotizing (flesh eating) pneumonia and that half of one of her lungs was gone and a large abscess was developing in its place.  Now truly becoming frightened, Children's hospitalists called in the best pediatric pulmonologist in the region (one renowned internationally for his expertise in treating cystic fibrosis).  To us, this kind pulmonologist, who was so clearly respectful of Awesome, talking directly to her with a twinkle in his eye, will always be our angel, our hero, and the one who saved our daughter's life.  After listening to our description of Awesome's second seizure, he quickly diagnosed Awesome with aspiration pneumonia (despite the fact that her pneumonia was in the "wrong" lung for aspiration pneumonia and despite the fact that aspiration is very rare with seizures).

 Aspiration pneumonia can't be treated with normal antibiotics, but requires special antibiotics effective against anaerobic bacteria.  In some very real sense Awesome's pneumonia had been untreated during her first two weeks in Children's hospital.  Without the correct antibiotic to combat it, the necrotizing aspiration pneumonia had had free rein to grow and eat away at her lungs for a full 19 days (5 before the hospital, 14 in the hospital).  It was a very unusual situation.  We were told that never before had Children's Hospital pulmonology unit staff and doctors watched a child develop a lung abscess while IN the hospital under treatment.  Awesome was immediately switched to IV antibiotics effective against anaerobic bacteria.  Immediately the progression of lung damage--as evidenced in daily x-rays--stopped.  Her diagnosis was finally correct: Aspiration pneumonia-- the result of having aspirated during her second seizure.  Aspiration during a seizure is very rare, but for Awesome it had happened.  Rare is rare, but rare happens.

Though she'd met none of the requirements for hospital discharge, though we were told she'd need another 4-6 weeks of IV antibiotic therapy, and though her PICC line (semi-permanent IV) had failed the night she was to be discharged, because Awesome was so depressed from being in the hospital for so long (18 days)--and consequently had stopped eating (eating well was essential for recovery so that if she didn't start eating again the hospitalists were threatening to install a feeding tube)--the wise pulmonologist decided to take a chance and discharge Awesome from the hospital.  The hope was that once Awesome was home her depression would lift, she'd begin eating again, and ultimately she'd get well much more quickly.  I was to give her five IV infusions a day (using a temporary IV site) under the supervision of a home health care company. Awesome was to return to the hospital in a few days for surgical installation of a Broviac catheter (a more permanent IV) into her chest.  We also agreed to bring Awesome in frequently--we lived just 10 minutes from Children's Hospital--so that our wonderful pulmonologist could continue to closely supervise her recovery.

At home with the correct antibiotics, no more depression, and a ravenous renewed appetite, Awesome recovered very quickly.  Though we were originally told her treatment would involve 4-6 weeks of home-based IV infusions, within 5 days of home treatment, the improvement was so dramatic that her pediatric pulmonologist felt confident switching Awesome to oral antibiotics.  The surgery to insert the Broviac catheter was canceled.

Within a week Awesome was feeling fine again and within 6 months the lung tissue that had been eaten away, had completely regenerated.  Her pulmonologist said it was very hard, if not impossible, to tell from her x-rays that her lungs had ever been so badly damaged.

During all the time Awesome had been so very, very sick she had had only two additional seizures.  The first was a short (1-2 minute) tonic-clonic seizure that happened with the initial quick fever spike at the beginning of her aspiration pneumonia.  And the second was a withdrawal seizure a day after her last dose of her antibiotics.  In other words, one seizure at the beginning and one seizure at the end of her illness. Amazingly, during weeks of intense fever and severe illness Awesome had been seizure-free.

Given the events of the past two months (two serious status seizures the last of which had caused very serious illness and damage), by the time Awesome was discharged from the hospital, we felt a keen need for her to have a first real appointment with a pediatric neurologist.  Despite pleading with the office staff for special consideration, the soonest we could see the neurologist who'd treated Awesome in the ER (and who had kindly stayed on the phone with me during Awesome's second seizure) was in six months.  We felt a first neurology appointment six months out to be unsafe under the circumstances; we needed expertise and someone who could show a commitment to be our daughter's neurologist now.  Appealing to our long-time pediatrician, we soon had a first appointment only a week later with an excellent, very experienced pediatric epileptologist--a neurologist who has had additional formal training in treating epilepsy.  He has proven, over the years, to be excellent.

Awesome's first pediatric neurology appointment included an EEG, which was, again, normal.

Over the next 12 months Awesome had about 10 more seizures, all of them febrile seizures prompted by the beginning of an infection or viral illness.  Because of her tendency to status (status epilepticus) seizures and because of her seizure-related aspiration, our special instructions were to treat Awesome with Diastat as soon as possible after the beginning of a seizure.  Diastat always took 10 minutes to work for Awesome; during those 10 minutes she continued to seize.  As that year went on, Awesome's seizures changed character, becoming less violent and generalizing more slowly.  A mid-year EEG showed an ever so slight slowing in one part of the brain, but was otherwise normal.  Reviewing a detailed seizure history mid-year, Awesome's epileptologist predicted that she would soon outgrow her febrile seizures; he told us that he need not see Awesome again if that was the case.  His prediction was soon correct; a year and two months after her first dramatic seizure, Awesome's seizures stopped completely.

Awesome had outgrown her seizures!  Her seizures began at age 2 1/2 and she outgrew them at 3 1/2.

In retrospect, as I tried to figure out the what's and why's of Awesome's seizures,  I reasoned that the exposures to Round-up must have somehow slightly damaged Awesome's brain causing it to be reactive (and thus the febrile seizures), but that over the course of the year her brain had healed. Of course, most children with febrile seizures also outgrow their seizures.  Perhaps Awesome was just one of those children.  No one but God will ever know the truth; it will remain a mystery about which we can speculate but never know for sure.

We now assumed that we were forever done with seizures.  That this was simply a chapter of our lives that we could close and put to rest.  Unfortunately, however, this was not to be the case.  We were not totally and completely done with seizures.  But we did have a reprieve....

Awesome's Story: Part II, 2008-2013