A visit to Children’s Mercy.

As mentioned before, Dax doesn’t have any coordination or control over his limbs, he has frequent little spastic motions; but he started doing a new movement a few days ago. The movements quickly transitioned to clusters – it was something we’d never seen before. We spoke to our neurologist as soon as we could and after our conversation, it was urgent to get an EEG on Dax. We were fortunate to have a room arranged for us at Children’s Mercy within a few hours of speaking with our neurologist. After an overnight EEG and video monitoring, we met with the neurology and epileptic team. It was confirmed that Dax was having epileptic spasms (also known as, infantile spasms). It’s true when they say go with your gut; we thought Dax was having infantile spasms. Tyson and I were able to recognize every episode that Dax had at home and in the hospital.

We’re choosing to share our experience to raise awareness. It’s EXTREMELY IMPORTANT to get an early diagnosis and begin treatment right away. Many babies who suffer from these spasms are not accurately diagnosed for more than a month, this delay can increase the risk of intellectual disability, autism, lifelong epilepsy, and death. As our readers know, Dax’s brain is severely under developed; these spasms are similar to a short in a fuse. The neurons in the brain don’t know where to go when they fire, so they all fire at once. We hope that by adding more doctors to Dax’s crew, a strict medication regimen, and close monitoring, we can keep Dax comfortable and stop or slow down these spasms. We’re so grateful to live only a few miles from Children’s Mercy and their Comprehensive Epilepsy Center, one of only twelve pediatric epilepsy centers in the nation. During our hospital stay, Dax continued to babble to all of the nurses and doctors, and kept his little grin on his face. We’re in awe of his strength and so proud of him. We’re on another hill in our rollercoaster ride.

*Kindly refrain from asking additional questions. We have many unknowns at this time.