“Our son Cody, at almost 10 years old, has faced more hurdles than most people do in a lifetime. We thought he was a healthy thriving baby until he seized in my arms for the first time at 8 weeks old. We saw a specialist immediately and he was admitted on continuous EEG monitoring. Our tiny, innocent baby was pumped full of medications to try and halt these episodes. Almost immediately he quit having obvious seizures but his EEG was showing non convulsive status. Meaning his brain was seizing non-stop but we couldn’t clinically see it. He became so sedated that he didn’t wake to eat and was put through a multitude of tests, lumbar punctures and brain scans. He was moved to intensive care and placed in a medically induced coma in hopes of resetting his seizing brain while more meds were added. Each time they tried to wean him from the coma the seizures returned. It was a devastating bleak situation and his future was not guaranteed. Doctors reached out to other doctors across the country to try and find a diagnosis and effective treatment. While still in the coma he was transferred by fixed wing jet to a different children’s hospital out of state to try an epilepsy drug that wasn’t FDA approved. Neurosurgeons there eventually removed the front left lobe of his brain. We were told that even though this area was the main driver, his seizures were multifocal and he would continue to deal with epilepsy. Not only were they right, but he also developed hydrocephalus as a result of the resection surgery causing even more damage to his already struggling young brain.
He has had 4 brain surgeries to date, mostly to treat hydrocephalus. We’ve tried many anti-epileptic drugs, ketogenic diet, CBD oil, he has a vagus nerve stimulator implanted in his chest and he still seizes nearly every day. He was eventually diagnosed with a rare multisystem genetic disease called Tuberous Sclerosis Complex and has many other manifestations of the disease as well. Life has been very much an uphill battle for him. We’ve done therapy at three different children’s therapy centers in addition to AEA services in our home and at school. We’ve taken him to children’s hospitals in four states seeking opinions from some of the best. While we have met amazing people and have gained something valuable from every therapy he has done. Many inch-stones have come and gone and he is still very much dependent on us for everything. Things he was successfully doing in his younger years; potty training, self-feeding and walking in a gait trainer for example have become harder as his brain and body have continued to fight against each other. In addition his spastic muscles have put tension on his bones and joints creating orthopedic problems that leave him facing a very real likely hood of major surgical intervention in his lifetime.
Like many parents of special children we have spent a lot of time and energy searching the web for resources. Finding hope in new treatments and connecting with other families keeps us moving forward. We found Dr. Mike through a video on Facebook that I randomly watched not even realizing it was about to connect us to someone that would be able to provide a very important missing piece in our journey. Cody’s body has been stuck in fight or flight mode literally all his life. He was born by c-section after a pregnancy that included a large subchorionic hematoma at 13 weeks and a head on motor vehicle accident at 32 weeks gestation. His body was likely stressed before his genetic condition even revealed itself. It’s so hard for any of us to function and grow when our brain and bodies aren’t working together and communicating like they need to.
We are only 5 months into his journey with Congruent Life but couldn’t feel happier with our decision to move forward with treatment. Cody is not verbal and is visually impaired but when he hears Dr. Mike’s voice he completely lights up. He trusts Dr. Mike and knows that he is helping him feel better. Just in the past month we have noticed an increase in his desire to communicate. His yes/no gesture is often times clearer and he’s showing more interest in his communication system. Though we still have discomfort issues, his legs and hips tend to be more relaxed than before. His core was so shut down that he was progressively developing scoliosis. The upper right section of his back was becoming humped and his posture was being affected. His scans have been showing that his core is reengaging, the hump is nearly gone and his spine is obviously straighter. Congruent Life has not made any unrealistic guarantees to heal or cure him of anything. However they have offered hope. Hope that balancing his nervous system will bring changes to his life. We trust and have seen that these changes make a difference in his quality of life. Our family feels so blessed to have added a doctor that genuinely wants to help our sweet boy and couldn’t ask for more!”