Written by Deanna (Mom) October 2019
Tyler is 7 years old. Tyler was born a preemie at 30.1 weeks along with his twin sister. Tyler weighed 880 grams at birth. Even though Tyler was born early and small he made all this milestones once his polydactyl was removed just before his 1st Birthday. Tyler overcame everything sent his way and blossomed into a wonderful child. We considered ourselves lucky and still do that what he suffered in the NICU remained Static and had no life altering effect.
In 2014, just before his second birthday, Tyler suffered a gran mal seizure. We went to the hospital, but they didn’t believe us and after searching for answers since 2017 we have come to learn on October 23, 2019, the seizure in 2014 would set everything in motion and would alter our lives completely in 2017.
September 2017, we put Tyler to bed a 5 year old, when he woke he was a 1.5 year old. Tyler’s speech from a mild stutter that started a week before turned into Aphasia and it was thought he suffered a stroke. After being rushed to the hospital it was found that Tyler had Epileptic Encephalopathy With Continuous Spike and Wave During Sleep (CSWS). This activity took away his speech and more. He was put on Seizure medication during that 4 day stay where he has continued to take it with repeat EEG’s every 3 to 6 months with gradual increases to stop the activity.
A second diagnosis came after 3 additional in house hospital visits for EEG’s. Tyler’s cognitive functioning was at a rapid decline, his seizure spikes continue to worsen. Tyler was a neuro typical child prior to September 2017. Tyler’s speech and cognitive functioning continued to decline. What we once knew was no more. With the EEG becoming worse and medicine not keeping the spikes down, October 2018 Tyler was diagnosed with Landau-kleffner-syndrome, a rare brain disorder/disease. He had to remain in the hospital then to start infusions and now continues to live in the hospital for a week of each month receiving Solu Medrol Infusions to help slow down the progression of this rare disorder and get it under control.
Every 4 to 6 weeks he was in the hospital from September 2018 through May of 2019. As Tyler’s journey continues the medical bills keep climbing. We pay them every month but they continue to grow. Every year the deductible starts at zero and we are back to square one.
Just recently we went to see 1 of 2 specialists in the USA who studies LKS our LKS were confirmed. Tyler’s LKS is irreversible. We will continue to fight and do every therapy we can to hope that he reaches a higher cognitive level. He returns to the hospital in 2 short weeks for a medication reduced EEG. The solu medrol infusions have stopped working.
His speech had drastically changed in the last few months and is constantly having break through seizures. For those that do not know Epilepsy, it harms your brain. It kills it seizure by seizure. Tyler’s brain is in constant electrical static.
Since the Landau-kleffner-syndrome diagnosis in October 2018, Tyler has been diagnosed with spastic diplegic cerebral palsy and another progressive brain disease temporal / hippocampal sclerosis. The goal is for Tyler to grow and be the best he can be no matter the odds now against him. With an early onset of LKS the likelihood of him becoming neuro typical again is nil but we will take anything back he can get.
“Remember not all disabilities have an outward appearance, the disability does not define the person, above all be kind and love one another for tomorrow is never promised”
Tyler’s diagnosis includes the following:
- Hippocampal sclerosis
- White matter disease
- Poland syndrome
- Pectus carinatum and malformed Ribcage
- Cognitively impaired
- Speech impaired
- Chronic static encephalopathy
- Tyler will be needing surgeries for his severe malformation of the chest cavity.