Our four-year-old son, Ayden, was born fourteen weeks premature suffering a grade four intraventricular hemorrhage. Along with this brain bleed, he suffered a myriad of issues, which compounded the severity of injury. Shortly after Ayden’s first birthday we started noticing abnormal eye, arm, and leg movements. Given the circumstance, we knew he would have developmental delay. However, we soon learned that these abnormal movements were in fact catastrophic seizures further regressing his development. It was at the age of 18 months that he was diagnosed with both spastic quadriplegic cerebral palsy and infantile spasms, an epileptic syndrome characterized by an EEG pattern termed hypsarrhythmia. This hypsarrhythmia is essentially a chaotic and disorganized pattern of brain activity that is, in Ayden’s case, an expression of brain injury.
Initially, it was uncommon for Ayden to go even an hour without seizure activity. After failing countless pharmaceuticals that only left him with long lasting side effects, we began exploring cannabinoid therapy. Thanks to the Realm of Caring, we found an amazing level of knowledge and support. As soon as we started CBD oil, we noticed a significant decrease in seizures. We also began getting eye contact and even his first belly laugh! It was on the EEG following CBD treatment that our neurologist found he no longer had the hypsarrhythmia.
Though this has improved, Ayden still must cope with the painful debility associated with his muscle spasticity. This exaggerated muscle tone effects all four of his extremities and significantly impairs his daily functioning. Unfortunately, treatment requires more than just CBD, and that is something we do not have access to in our state. If we fail to relieve his spasticity, we face the real possibility of Ayden needing invasive orthopedic and neurosurgery. Contractures, scoliosis and hip dislocation are the most common conditions requiring corrective surgery. Surgeries like selective dorsal rhizotomy, tendon lengthening or transfer, osteotomy and limb reconstruction are some of the most painful surgeries to endure. Imagine your body uncontrollably contorting and being “stuck” in painful positions and instead of being overly sedated from pharmaceuticals, getting relief from cannabis and actually being able to make developmental progress. We know cannabis can help with this as we have traveled to try this for him. Not only does it provide physical relief, but cognitive improvement as well. Ayden is non verbal. The month we tried cannabis, he said “Mom” for the first time. That same day while waiting on an elevator, he looked at a stranger, lifted his head off my shoulder, and said “Hi” to her. This is the relief we see when Ayden can try cannabis. We are fighting tirelessly to have access in our state so Ayden can have that 24/7.
