Gianna is proving to us that she is retaining and learning information all these years even having intractable epilepsy. Below is a video of her in school after we added the THC oil and her seizures decreased from 100+ to less than 10. It is remarkable to have validated that she does know her letters and colors.
Gianna has always benefited from the therapies but with having less seizures, she is able to get the full potential from the therapies. In the video below, we had increased her THC oil and just came back from GyroStim therapy.
Link to the oils Gianna is on:
Gianna takes medical cannabis in the form of a CBD oil tincture. This tincture is in an olive oil solution containing a high CBD cannabis extract that is given in her food. This particular CBD-enriched strain contains low levels of THC.
Gianna has not responded to anti-epileptic drugs (AEDs). In some medications we have tried, they have made the seizures worse. In addition, many have had side effects. The drug Sabril made Gianna’s go into a constant seizure called status epilepticus. It was a horrible experience which made us realize that these meds can actually CAUSE new types of seizure and behaviors. Lamictal was one of the only drugs that we thought might have a possibility of helping her seizure frequency. She was on it for 5 months and it was the only seizure med that we saw a noticeable seizure decrease. Unfortunately, she acquired the severe rash that is a rare side effect of the drug. Many of the drugs we have tried, seem to work the first few weeks but as soon as Gianna get’s ill, she does not reset herself back to her good seizure days, and goes back to having more frequent seizures and sometimes worse than when we started.
We had heard about Medical Cannabis years ago when Gianna was five (2009) but was reluctant to try with Gianna. At the time, the parents that we saw where either making their own oil, or getting them from sources they had to trust was making them without using toxins. The reliable lab tested oils in the dispensary didn’t have the oils in the tinctures that were needed for children to dose properly. Some oils had to be double tested just to make sure the ratio on the label was accurate and safe. The industry has changed since 2009, and their are now more choices for safe medical cannabis oils from companies you can trust.
The marijuana plant contains about eighty-five different chemical compounds called Cannabinoids (CBD). Cannabinoids are substances in cannabis that act on cells in the body (called cannabinoid receptors) to cause some effect. The most familiar one is Tetrahydrocannabinol (THC), which can cause the “high” associated with recreational marijuana use. Most of the anticonvulsant properties come from a different chemical in the plant called Cannabidiol (CBD), which is not psychoactive. CBD (one of 85 active cannabinoids in the cannabis plant, does not cause psychoactive effects but has shown some positive effects on certain body systems.
The endocannabinoid system in the brain is what registers the psychoactive effects of marijuana on the brain, and is also the system that regulates the level of activity in the brain’s neurotransmitters. These neurotransmitters are responsible for various psychological processes. In patients with epilepsy, these neurotransmitters are firing all the time. Cannabis can help this firing.
Unfortunately at the time, their was no reliable company selling THCa. Dr. Goldstein suggested adding a small amount of THC. In December 2014, we added THC and immediately saw a decrease in gianna’s drop seizure frequency. She went from having 100++ drop seizures an hour to 10-20. In 2015, THCa became available and we added as a 3rd oil to see if we could decrease THC amount. We noticed a difference in her muscle tone, but no signicant difference in seizure reduction to omit or decrease the small THC we were giving. In January 2015 Gianna was on 3 oils from Myriams Hope. (CBD, THC and THCa). We dose Gianna 4 times a day with food. If Gianna is sick or falls asleep before her evening snack, we will dose via G-tube.
With the Cannabis oils, we have seen over 90% seizure reduction. We have never seen this great of an improvement with any AED we have tried with Gianna. AED’s we’ve seen about a 30% improvement.
It is important to note that Cannabis is not a cure. Gianna still has seizures.. it is a medical treatment just like the AED’s we have tried. With Cannabis, we are not seeing the side affects.
When Gianna is sick she still goes back to having increased frequency in her drop seizures, and about a few months of almost seeing no seiuzres, GIanna got sick and had to be hospitalized from uncontrolled seizures. Within a day of receiving an IV of antibiotics, Gianna went back to her great baseline of having great seizure days.
This is what is different than what we have ever experienced before; Gianna has never before been able to get back to where the AED meds made her seizures frequency better.
Link to Gianna's Doctor:
Gianna has made tremendous improvements since starting medical cannabis. Cannabis is the only medicine that has resulted in quantifiable lessening of Gianna's seizures. The therapies we have been doing for years have been so helpful but we were now seeing the effectiveness due to the seizure decrease.
Prior to drying, the chemical that becames THC is known as THCa. Heat expedites this conversion in a process known as decarboxylation, a fancy word that describes what happens when you smoke or vaporize flower. THCA is a non-psychoactive cannabinoid found in raw and live cannabis.
In 2014, I got a phone call from childhood friend Rob Taft. I’ve known Rob since junior high. Rob was a licensed grower and heard about Gianna through mutual friends and wanted to help sponsor Gianna’s oil.
Rob not only wanted to sponsor Gianna but go through this journey with us because he knew it would work. The call couldn’t have came at a better time, because Gianna’s seizures were getting more frequent and it was over 7 months that she was having a drop seizure every 10-30 seconds. We met with Gianna’s neurologist who gave his approval to start. Gianna's neurologist understands that we have tried all we can with no success in getting any seizure control.
August 2014 we met with Dr. Bonni Goldstein. Rob Taft joined us in our meeting because he wanted to be with us and support us all the way. We started Gianna on a low dose of a CBD oil Tincture from a company called Myriams Hope. Within the next few weeks GIanna’s seizures were the same but her cognition improved. Her cognition was such an improvement that some of her therapist asked what we were doing differently. She was listening to commands and seemed to understand the questions we were asking even having hundreds of drop seizures and hour. We were in contact with Dr. Goldstein weekly and she suggested we start Gianna on THCa.
Link to Rob's dispensary: