Landon came into the world in the most normal of ways. When we looked into our newborn baby’s eyes, we had no idea what a brave, strong and caring soul he would become. Landon was born June 14, 2005, weighing in at a perfect 7 pounds, 5 ounces. His Apgar scores were great. We did notice his fontanel (soft spot) was unusually large, but after the pediatrician looked him over, everything checked out OK.
Over the next few weeks, Landon would do this funny laughing sound. We couldn’t tell if he was laughing or crying. His jaw would quiver and the right side of his face would droop. I was concerned so I checked the Internet. His symptoms made me wonder if he might have a neurological disorder. I brought this to his pediatrician’s attention, but he thought it was just the way Landon cried. Though he told me he was fine, I sensed something was wrong. But as Landon was developing and growing like a typical baby, I ignored my concerns.
At 13 months old (August 3, 2006), our world drastically changed. I found Landon spread eagled on the floor, his face blue. I immediately took him to the doctor. He told me Landon may have had a seizure. A seizure? What does this mean? The doctor told me the likelihood Landon would have another seizure was slim to none. After scheduling an EEG for the next day we were sent on our way.
Around two hours later Landon had another seizure and then again four hours later. That was when David and I decided to take Landon to a medical center in Texas. When we arrived at the emergency room and were explaining what had happened that day, Landon had another seizure. He was admitted and we learned he had a seizure disorder.
This led to year after year of treatment with many different and unsuccessful medications. We noticed Landon’s laughing episodes would come shortly before a seizure. We questioned his doctors about this, but after several stays in the EMU (epilepsy monitoring unit), they could not see anything on the EEG during the laughing episode itself. It was played off as being behavior related.
It was so frustrating because he continued doing these laughs at unusual and unprovoked times. But when he might be expected to laugh normally, we noticed he seemed scared and uncomfortable–even as we played with him and even tickled him. He would only laugh before a full blown seizure.
As Landon’s seizures continued to worsen he began declining developmentally (cognitively and speech). We went in for more testing. He was put on and pulled off several different anti-seizure medications. After having a VNS (vagus nerve stimulator) implanted, the seizures still continued to get worse. In the fall of 2008, Landon underwent a series of brain operations. Portions of his left parietal lobe and temporal lobe were removed.
While Landon was still in ICU, the laughing spells accelerated from six times a day to about 120 a day. He would wake up from sleep, laugh, and then go right back to sleep.
While visiting in the hospital over Christmas, a family member became eager to find what was causing the laughing spells. He turned to the Internet and found the BNI’s website. After he referred me to this site, I found Landon had 99.9 percent of these symptoms. I also found the MRI of another patient on their site and compared it to Landon’s MRI. They were similar. The next morning I presented my findings to our epileptoligist.
While still in the hospital Landon started suffering outbursts of rage behaviors. This scared me for Landon had always been a lovable, happy angelic toddler who rarely cried. His new behaviors became more violent every day. One day he attacked his 18-month-old sister by banging his head into her small chest.
On January 3, 2009, we learned Landon had HH. These laughing episodes truly had a name. He was having gelastic seizures. They were coming from so deep in the brain that the EEGs didn’t pick up the activity.
Our neurosurgeon spoke with us about sending Landon to Arizona for the endoscopic approach surgery for treatment. So we all flew to Phoenix (our neurosurgeon came with us). Landon had his last gelastic seizure at 7:15 a.m., April 1, 2009.
For 14 months Landon had no signs of seizures or defects from the surgery itself. After six months postoperative Landon began to laugh when he played and when we tickled him. He was finally laughing as every toddler should normally, and by another six months began gaining in development (cognitively, speech & motor).
At the end of May 2010 I started noticing Landon losing control of his left side of his face again. At first I just thought it was me being over protective. But on Landons 5th Birthday just weeks after I notice the changes his Grandparents questioned me “when did Landons facial drooping come back”. I then knew my mommy paranoia was the REAL deal.
Around 4 months later he started having uncontrolled out bursts of crying episodes. At first I blew it off, since Landon had developed to the 20 month range we believed he was just going through the terrible twos. But as the episodes went on you could tell he had no control, he looked straight through you. But had that grip in his hands and fear in his eyes, he looked for us to pull him out of it…..
As these episodes went on our doctors got back involved. And the fear of the “seizure” word came back to haunt us. New VEEGs, MRIs, PET scan and SPECT scans were ran and once again the scans that came back were apparent for residual HH. As time passed and the new diagnoses came out as Dacrystic seizures. Landons seizures started turning into rage attacks. They became so violent Landon actually attacked the front door biting the handle and busting his lip open. We then decided to remove him from school and put him on homebound services. My fear was him having a attack at school and him hurting another kid. ( the thing that kept going through my head was that those 6 kids are his little friends that understand him and they love him for the loving & happy Landon that he always is. I could not imagine any of them ever being scared of him.)
So after a long year of juggling these new UNWANTED seizures, we were finally reunited with Dr. Rekate in New York and on October 27, 2011 he did a repeat endoscopic approach removal of the residual HH. Landon is now home doing well. We all see that he doesn’t seem quite so cloudy.
My advice to parents, from our experience with HH, is that you know your child best. If something is not normal in your child’s behavior, research and question doctors as much as you can. We have found living with this condition has been confusing and by far harder because of its rareness. Our lives have changed dramatically, going from 2 incomes to 1. Landon’s medical treatments and therapy consume all of my time. We have learned to take life with HH day by day and that we never give up HOPE for the future! By seeing him grow, learn and just develop is worth more than any parent could ever ask for. We have learned we are the best advocates for Landon, and we will never ever give up HOPE.
Read more about Wendi’s dedication to raising awareness of hypothalamic hamartomas and fundraising effort for Hope For HH