Our daughter Kaitlyn is 5 years old. She has suffered from seizures since she was born but it went undiagnosed until she was 2.5 years old. We have tried many different seizure medications. She started to lose the mobility and intellectual capabilities that she had. She declined to the point of the only thing she was able to do on her own was breathe.
Our Minnesota neurologist had no other pharmaceuticals that he felt were safe for her. He recommended and supported us starting her on cannabidiol. Unfortunately the way the Iowa law is written we were unable to obtain our cannabidiol card so we ended up getting a CBD oil with no THC.
Over the course of the next 3 months Kaitlyn made drastic improvements. Her seizures were reduced, she gained the ability to walk again, she started talking again and many of the things she had become unable to do she started to regain the ability.
Although this oil helped Kaitlyn drastically she needed something stronger which we couldn't obtain because her Minnesota physician couldn't sign for our cannabidiol card. We then had to make the gut wrenching decision to leave our neurologist who knew Kaitlyn and treated the most rare and extreme cases of epilepsy to find an Iowa physician to start to establish care. We found an Iowa neurologist that was willing to take her case. He decided to try yet another pharmaceutical with Kaitlyn. This like all the other medications she had tried didn't help.
On January 23, 2017 her neurologist told us he was out of safe options of medications to prescribe for Kaitlyn. Her subclinical seizures (which are seizures her brain is having that you can't see) were extremely severe. More than 3 times as severe as when she had an EEG in May of 2016. The only option he was left with was increasing her lamictal but he was very doubtful that would help at all. He then agreed to sign a cannabidiol card for us to try this new option for Kaitlyn.
At this point, Kaitlyn has started to have drastic muscle loss on the left side due to how severe her subclinical seizures were. We started her on Haleigh's Hope February 3, 2017 after obtaining our cannabidiol card. Just hours after her first dose her private duty nurses were noticing changes with her. Her constant hand tremors were gone and haven't come back at all since her first day on Haleigh's Hope. She has since then regained all ability and movement of her left side. She is talking much more clearly, she can put multiple sentences together instead of just 1 sentence of about 4-5 words which was her "normal." She has become a more vibrant, happy and motivated little girl. Her sensory issues have drastically reduced and she is attempting things with textures she would have never done prior to Haleigh's Hope. She played in dirt for the FIRST time this past week.
We know that with whole plant medical cannabis Kaitlyn could drastically reduce or even eliminate the pharmaceuticals with harmful side effects that she is still currently taking.
Patient & Caregiver Stories
These stories represent real Iowans suffering from complex medical conditions that need access to medical cannabis right here at home.