Landau-kleffner-syndrome is a rare brain disorder and disease that still continues to take our child.
In September 2017 Tyler’s parents put a 5 year old neuro typical child to bed, when he woke he was a 1.5 year old no longer neuro typical. 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 cognitive functioning. 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 slow the activity. With no success with EEG improvements.
A second diagnosis came after 3 additional in house hospital visits for EEG’s. Tyler’s cognitive functioning was still at a rapid decline, his seizure spikes continue to worsen. 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. In October 2018 Tyler was diagnosed with Landau-kleffner-syndrome a rare brain disorder/disease and 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. Tyler is the 2nd child that the pediatric neuro department at St. Peter’s has seen. It is so very rare.
Every month he is in the hospital our family works hard with help of others to ensure that Tyler is never alone. As Tyler’s journey continues the medical bills keep climbing. We pay them every month but they continue to grow. We know everyone has Bill’s its life but a child in the hospital 5 days at a time with no financial assistance is greatly impacting our daily lives.
We are trying with the support of his doctors In Home Infusions as it has clearly been shown that these infusions help him in daily functioning so there will be less of a strain on managing everyone’s days to ensure he is not alone.
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.
Yes Tyler was born a preemie, he is twin B and weighed 880 grams born at 30 weeks. Tyler stopped growing in utero at 27 weeks. Tyler overcame everything sent his way and blossomed into a wonderful typical child. We considered ourselves lucky and still do that what he suffered in the NICU remained Static and had no life altering effect. We will never know for sure if what is happening is a result of being a preemie or something else that happened after 2014.
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. So far his speech is progressing so wonderfully with treatments.
Never take tomorrow for granted, never know how things can change. Be kind, be courteous and love. We are hoping our much needed appointment with one very special doctor in Boston in October will help give us more answers to LKS, more understanding and more help for our miracle baby. We thank the Lord everyday for our children. All three are the greatest gifts of all. Tyler loves to play with his older brother Trevor who has Aspergers, and his twin Bailee who is his best pal. She also has had hospital admissions for acute illnesses.
We are so lucky to be their parents.
Tyler’s diagnosis includes the following:
Tyler will be needing surgeries for his severe malformation of the chest cavity.