It has been a week - 7 days since Michala started medical cannabis oil. I have tried a few times to put into words the changes we have seen. My heart is so incredibly full! I have tried to put the emotions aside so they wouldn't cloud my reasoning. As Mike says we are being cautiously optimistic. We have been through drug studies and we know the honeymoon period well, of starting a drug and it works well until the body adjust and it works no more. Also because of the studies we have been in we recognize the importance of journaling seizure activity.
For those that don't know the, before CBD, here it is. Michala had 3-6 seizures everyday. The seizures lasted anywhere from 15 minutes- to an hour. These seizures interrupted her day, seemed to cause her pain and she would be out of it for quite awhile afterwards. She also had around 20 startle seizures a day. These would happen when someone coughed, made a loud noise, scared her and sometimes even if we called her name. They can last up to 5 minutes and sometimes go into a different type of seizures. She also had screaming seizures that were often tied into one of the other seizures.
Day 1 she had eye contact with us. Not just a glance but real eye contact. Clear eyes, less nystagmus, which is where her eye moves involuntarily, decrease in seizure frequency, length and strength. She had 1 seizure that lasted 5 minutes and 1 that lasted 5 seconds. No screaming seizures. The 5 minute seizure was midday so it was recommended that we do the dosing 3 times a day instead of 2 times. She gets the same amount but we divide it by 3 instead of 2. She takes less than half a teaspoon the entire day.
We have an office in our house where Mike works and Marlee Anne does school. As Michala was exploring, as if she was seeing this house for the first time, she went down the 2 steps into the office with no trouble at all. Before I got to her to video it she had already decided that room wasn't exciting enough for her and she was back up those 2 steps.
That night as we were getting ready for bed I asked Michala for a hug. This is something I have done for as long as I can remember. I would put her arms around my shoulder and ask her for a hug. I would pretend she was hugging me. This time when I asked her she leaned in and put her arm around me. She doesn't use her right arm so she put her left arm around me. Well she didn't before CBD. We are seeing her use it more. I also asked for a kiss like I always do. This time she leaned in to kiss me.
I should have mentioned that before CBD she was in a lot of pain. We had to give her pain meds daily for the headaches she had, as well as the phantom pains she had. She would grab her stump from her amputation, because of her cancer and scream. This was a daily thing for her. Since starting CBD she hasn't had any pain medication. She doesn't grab her leg and has not held her head and cried in pain.
Day 2 she had 3 brief seizures. They were so brief we are not sure if they were startle seizures or clonic seizures that just stopped and didn't go into a typical seizure for her.
Again no pain meds, no screaming out. Oh yes and less aggression. She was taking Risperdone to help with her aggression and she has been taken off of that. She is still on her pharmaceutical seizure medications.
Day 3 she had 4 seizures that we would call startle seizures or short seizures. They were very brief like a startle but there was nothing to startle her.
Day 4 was a horrible day. She had 3 seizures lasting 50, 22 & 32 minutes. She had to have rescue meds to get them stopped. Deep breath here because I was unsure what was up. Michala typically has increased seizures with the full moon, rain and cloudy days. It was almost a full moon and a big storm was coming over the Rockies.
Day 5 we were anxious to see what the day would be like after the day before. She had 2 really short cluster seizures. They were 2 and 5 seconds. Thankful for a much better day.
Day 6 was 3 startle seizures that she recovered well from. These are ones we could have missed if we had not been right with her when they happened. One we thought she would go into a full blown seizure but even that one was over quickly. We met our friends from Georgia at their layover in Denver. Two of them asked Michala to give them a hug. She leaned in to hug them. This was good to see that it wasn't only when we asked her.
Day 7 as we were praying this morning I asked Michala to hold my hand, because we hold hands when we pray, but she never has. When I asked her she reached over and held my hand. It was brief but she understood what I was asking her and was willing to do it without me reaching for her hand. She has never done that when I asked or held my hand even for a second. She had a startle seizure that was a hard one for her. It lasted a minute. She had 3 brief startles that were just quick jerks.
This morning she leaned in to hug and kiss me without me asking. It was after her yogurt and medicine so I saw it as her way of telling me thank you.
We are also seeing positive changes in her sleep pattern. There could be a couple of reasons for this. She is up and active all day long since starting the cannabis oil. She isn't taking all those seizure induced naps and missing things because she isn't having those seizures that cause them. She may take a brief nap if she is sitting with someone but that's not everyday. When it's time for her to go to bed she is sleepy and sleeps more soundly. She is not having those times where she wakes up throughout the night crying or screaming.
We know we have a ways to go. We just started this journey but the first week looks so very promising. We are aware her seizures may start back and we may have to make changes to her dose. Right now we are so very thankful for this opportunity to help Michala in such a huge way. Thank ya'll for going on this journey of hope with us and keeping us in your prayers.