Patient and Caregiver Story – Nola and Stephanie Schlueter
Cannabis medicine cuts seizures, improves quality of life for Epilepsy and Rett Syndrome sufferer.
Stephanie has Rett Syndrome– a neurological disorder that which leads to severe impairments. She also suffers from severe epilepsy which is common among Rett sufferers. Nola is Stephanie’s mom/caregiver and says seizures are something we have dealt with for most of Stephanie’s 30 years of life. We’ve tried every single epilepsy medicine and even combinations of the medications and still Stephanie had seizures. But Nola didn’t give up trying to find something that would help her daughter. She researched many therapies and she saw that cannabis could be an option. When Nola suggested cannabis therapy to her neurologist, he said go for it. Stephanie was almost resistant to traditional medication and the hope was that Cannabis could make a difference. When Nola turned to cannabis, Stephanie was on 4 seizure medications, in high quantities, every
Nola and Stephanie started the long process to get their medical cannabis card and finally were able to start treatment last October. It took a little while to see what would work the best for Stephanie. But when
they tried the transdermal patch with Thca which provided symptom relief without psychotropic effects the impact was immediate. Thca is often used to treat seizure disorders and other neurological issues.
Stephanie now has 90% control (meaning 90% seizure free). She only needs a small part of the patch to make it work for her as she is only 70 pounds and a small portion can provide relief for up to 12 hours. Nola is working with Stephanie’s doctors to titrate her off the pharmaceuticals. Nola said what they are super excited about is that Stephanie’s personality is coming back because she is not in a fog from her medications. She’s silly, smiles, laughs AND she does not have nearly as many seizures.
Stephanie also suffers from dystonia which also is common among Rett’s patients. This affects her at night and makes sleep difficult for her. She is now using a cannabis tincture that contains a couple important cannabinoids with small quantities of Indica specific THC, CBN – a cannabinoid metabolite of thc that promotes sedation along with CBD which promotes homeostasis and a sense of well-being. For all of her 30 years, Stephanie would be up 2,3,4 times a night. Nola says,” that was our life. We’d get up and try to make her comfortable, turn her, adjust her pillows, roll her around but now with the tincture she sleeps all night long and wakes up happy.” Nola says, “I didn’t know how it felt to sleep all night. It not only has improved Stephanie’s demeanor but I feel so much better too! “
Cannabis has made our lives completely different. Stephanie is happier and I feel we are not hurting her with all those medications. Nola is trying to educate people along the way about cannabis. She says, “Many people who know Stephanie know she has been on these drugs her whole life and it wasn’t good for her and now she is taking cannabis and improving. Cannabis is a plant from the ground and it works…how could you be against it? It needs to be more widely accessible. Everyone we know, family, friends, the medical community, they are super supportive. They see what is going on with my daughter. “
Nola and Stephanie go to Pdi medical cannabis dispensary. Nola says, the first time we walked in, Joseph Friedman and Cori Dorsey were so helpful. They helped us with our application and then after we got our card they helped us figure it all out. We didn’t know what would work or how much Stephanie should take but Joseph spent so much time consulting with us telling us what to give her, how much and when. He took the time to understand the goal of the therapy. Now we continue to work with Joseph and with Pharmacist Nick Salamie and Product Specialist Elle. They are so knowledgeable and so helpful. They all know we don’t want any psychotropic effects because Stephanie is non-verbal and can’t communicate how she feels. They understand this and get us what we need and are so concerned and sincere.They really care about us. The Pdi Medical difference is that they really focus on patient care. They treat cannabis as medicine.