Landon Raftery

First post: Sep 12, 2018 Latest post: Nov 29, 2018
Seize: to take hold of something suddenly and forcibly.  Landon has suffered from uncontrollable seizures almost his entire life.  At the tender age of 3-years old, he was diagnosed with a rare form of epilepsy called Myoclonic Aestic Epilepsy (MAE), also known as Doose Syndrome.  This condition is extremely difficult to treat, because MAE patients typically do not respond to medication.

In search of seizure freedom, Landon has been prescribed a cocktail of medications over the years: Keppra, Topamax, Onfi, Depakote, Abilify, and steroids.  He has tried a host of natural remedies, including CBD oil, chiropractic care, essential oils, and the DAN (Defeat Autism Now) protocol.  His therapies have been some combination of physical therapy, speech therapy, occupational therapy, aquatic therapy, hippo therapy, and music therapy.  Hebrews 11:1 reads, “Faith is the confidence in what we hope for and the assurance about what we do not see.”  As the seizures continued, we remained faithful and hopeful.  

When Landon was 5-years old, we had a major breakthrough!  After the first few drugs proved ineffective, we were introduced to the Ketogenic Diet—the high-fat, low-carb medically prescribed nutrition plan that was known to eliminate MAE seizures.  By the grace of God, Landon was transferred to the world-renowned Ketogenic expert, Dr. Eric Kossoff at Johns Hopkins.  The Diet changed Landon’s life!  Within 3 months, Landon’s seizures were reduced by 90% and he was off all medications!  He was considered to be a “super-responder” and his story of success was highlighted the book Fighting Back with Fat. 

However, the Ketogenic Diet is not a long-term solution.  So, after 5 years, Landon was weaned off the Diet.  It was a scary time as parents, because nothing was protecting Landon’s brain from the MAE beast.  Regardless, we stepped forward in faith.  Landon was seizure free, he was off medications, and on Halloween that year he was able to truly experience trick-or-treating like most other kids his age.  But, the journey was not over.  

While his seizures were under control, his behavior started to change.  Landon was always a sweet boy, but he became increasingly physical to family members, teachers, and friends.  His episodes would become so uncontrollable that it threatened the safety of those around him. Over Labor Day weekend last year, his situation escalated to the point that we took him to the ER in hopes of having him admitted to the child psychiatric unit for evaluation.  At that very moment in the waiting room, Landon experienced his first tonic-clonic seizure since 2011.  To bring immediate relief, doctors put him back on the drugs. 

His new cocktail of medications actually caused more harm than good.  In the following months, Landon experienced an increase in seizure activity.  So, we decided to re-initiate the Ketogenic Diet under the care of a new medical team at Lurie Children’s in Chicago led by Breanne Fischer and Robyn Blackford.  Since he was considered a “super responder” years before, we were hopeful that the Diet would be our answer once again.  Unfortunately, this was not the case.  Landon’s seizures continued to worsen…particularly at night.  His seizures were relentless as his body tried to sleep. 

Landon’s primary seizure-trigger is fatigue.  His fatigue created more seizures, while his seizures led to more fatigue.  We could not get ahead of this vicious cycle, and the consequences were painfully clear—accelerated cognitive, behavioral, and physical delays.  Landon was in a medical purgatory with no way out.  We were watching our son slip away right before our eyes.  While our faith remained strong, our hearts were broken.  We were desperate for answers.  

On August 23rd, we met with a team of specialists to determine the next course of action for Landon.  Four days later, we met with one of Chicago’s foremost pediatric neurosurgeons, Dr. Authur DiPatri, who met with us on a personal day when he learned the severity of Landon’s situation.  Dr. DiPatri created an opening in his schedule two days later to proceed with surgery.  On August 30th, Landon underwent surgery to have a VNS (Vagus Nerve Stimulator) device implanted to reduce his seizure activity.  With so many failed interventions, this was considered our last line of defense.    

Surgery was completed, and everyone was extremely hopeful for positive results.  We were encouraged, praying this would give our son relief from the storm inside his body.  After Landon was discharged, the VNS device worked as promised; it stopped dozens of seizures in their tracks!  We thought we finally found the magic bullet! However, when we returned home, his situation sharply declined. 

The frequency and the intensity of his seizures exponentially increased, while his cognitive abilities got far worse.  His seizures were ruthless—long, violent, back-to-back, and firing at a rate of 20 per night.  Four days post-op, Landon was barely walking and only speaking in one word responses.  Then, his body shut down.   

At 4:00am on September 4th, Landon suffered a prolonged status-seizure—he was unresponsive with a low-grade fever and a heartrate of 180+.  With his eyes staring blankly and rigid body, our world seemed like it was crashing in.  We rushed Landon to the ER, where three heavy doses of emergency medicine could not bring him back.  So, to protect his brain, he was put into a medically-induced coma. 

For the next two days, Landon was unresponsive as everyone waited for the medicines to wear off.  He was transferred from the ER to the ICU (Intensive Care Unit).  On the positive side, his seizures were controlled and his brain was able to rest through the night for the first time in years…but that came at a price.  At 2:00am on September 6th, Landon had another prolonged status-seizure, so he was put back into a medically-induced coma and connected to a feeding tube.

Later, it was discovered that his episode was actually NOT a seizure.  This led doctors to believe his body was reacting to brain damage sustained by the chronic seizures he’s been suffering.  Later that day, a CT scan and an MRI was conducted.

Doctors were expecting to find something that would be causing all these problems.  As we waited for the results, our minds began to wander and fear crept in.  That time in the ICU was grueling, as we struggled to get clear answers to what would restore healing inside Landon’s brain.  We were making critical decisions for Landon every single day…& at any point in the day.  It was raw and it was intense.  We were on our knees begging for Landon’s story to be redeemed.  

Then, our first miracle was revealed when both the CT scan and the MRI came back clear!  NO BRAIN DAMAGE!  Next, everyone’s excitement grew when we saw Landon begin to physically move for the first time in days!  That’s when the roller coaster took yet another unexpected turn.  Landon regained full consciousness, but his cognitive functions were wiped out.  He was catatonic.  No eye contact, no emotion, and no communication. It was as if Landon was a prisoner stuck inside his own body.

Because MAE is such a rare condition, it is difficult for epilepsy researchers to find sufficient number of subjects (children) to conduct proper research.  As a result, families in our situation are left with anecdotal evidence of what “works” in other MAE cases.  While in the ICU, we were presented with one such option.  

The pediatric neurologist caring for Landon was Dr. Diana Sieciechowicz.  She told us about an MAE-specific protocol developed by Dr. Charles Marcuccilli, a well-known neurologist in the community: Felbamate and Depakote.  While we typically cringe at the first mention of another drug experiment on Landon, this time we had no other choice.  Landon was incapacitated and all other routes had failed.  So, we cautiously moved forward.

As the days went on, the seizures went away and we began to see small improvements in his recovery.  Five days after being admitted to the ICU, Landon became slightly more stable and was moved to the pediatric unit.  He was still cognitively impaired, connected to a feeding tube, and continuously monitored by EEG.  Then, on September 9th, we witnessed our biggest miracle yet...Landon WOKE from his fog!  At 9:17pm, he smiled and softly said his first word, “Yeah.”  Hallelujah!

We praise Jesus for each and every day!  We walk in the truth that the BEST is yet to come for our sweet boy!  Landon has never once complained about his condition and has remained steadfast in his trust.  He will need to re-learn how to walk and talk, and his rehabilitation journey will be long.  BUT, God has already gone before him, and Landon has an army of prayer-warriors behind him!  We will be updating Landon’s story as prayers are answered and his journey of healing and redemption continues!

#hope #hoperemains #hopeforlandon

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