We are back in Minnesota. Wyatt’s trial with medical cannabis is over for now. He had no problems transitioning off the medicine since cannabis has a really short half-life (aka the time spent in the body’s systems.) We did observe some lingering seizure control the first couple days, but not as much yesterday.
On a positive note, we haven’t observed any substantial changes to the skills he gained while we were in Oregon. I hope we don’t, unless they are to steadily improve. (Yay for our little walker!)
It is great to be home again with our family together, but Oregon will beckon. The main objective of our trip was accomplished. We know that cannabis is DEFINITELY medicine when used properly. We also know that it can help mitigate Wyatt’s seizures. However, I still want more. There are so many more cannabinoid profiles left to try to find the right one that maximizes his seizure control. Thirty days wasn’t enough time to find the best one. Now comes the difficult decision of what to do next …
We haven’t made any official decisions on our next steps. We are praying for some clear direction to help us make a good decision for our entire family and for Wyatt. We meet with his neurologist next week and maybe we’ll get some more insight that will help inform our decision.
PS – We did make the most of our last week in Oregon as a family. Here are some pics of our adventures.
Wyatt’s days have been pretty good since we tried recreating Day 4, except for some early morning wake-up calls on his part. (Seriously, 4 a.m. is too early to start the day!) He had fewer seizures each day – except for one day. We have just under a week to go!
We are anxious to go home to see our friends and family, but it will be bittersweet knowing we can’t continue to trial cannabis to treat Wyatt’s epilepsy for at least a year.
Sorry this is short! Very busy with the whole family here! Yes, Jeremy and EJ just arrived and we plan on having some big adventures exploring Oregon while they are here.
Over the last nine days through all of our experimenting Wyatt has only had an average of about a 30% reduction in seizures. This is making me want to go back in time to Days 4 and 5 where we saw the best control – around 70%. I am going to try to recreate that day with the same dosing and cohort A. We’ll also try to tease our which strain in A is most effective. We have just over a week left here in Oregon and we want to try to maximize control if we can.
C didn’t deliver as much as I wanted it to in reducing intensity so we took that cohort out of the equation for now.
There seems to be so much potential here and lots of options (we have very quickly tried 15 strains in the three different infusions and there are more that have helped folks with seizures) but we are running out of time to experiment and it breaks my heart.
It has been a true blessing to spend all this one-on-one time with Wyatt. He is such a sweet little character. I love him so much. He is persistent in all that he sets out to do and keeps working on his independent walking. I am beyond impressed and know he will keep it up when we get home.
Wyatt and I have been making friends and keeping very busy. We continue to see the sites around Eugene. We have met some “cannamoms” that can truly relate to the challenges, the tweaking and fine-tuning of treating a child with cannabis. I am so grateful they are here.
My hopes for the future manufacturers of Minnesota’s program are simply to put patients first with a commitment to quality, diversity of plants, consistency and affordability. I have high expectations and anything less isn’t good enough for Wyatt or any of the patients that could benefit from this program. We need manufacturers with the highest standards and the biggest hearts to ensure our program is implemented well.
Here’s what I’ve learned that I hope could be helpful in setting up Minnesota’s program: first, as with all medications and medicinals, one size does not fit all … different patients respond differently to the various cannabinoid profiles of different plants. With that, it will be important to allow genetic diversity, a large variety of strains, so that patients can evaluate different options effectively.
Second, we need manufacturers who can achieve predictable quality through consistent and safe growing and manufacturing methods. You must be able to certify that patients are getting the specific cannabinoid profile that’s matched to them. It is a tremendous, long-term responsibility. For Wyatt, it could mean the difference between having a good day with his family or having hundreds of seizures.
Additionally, data and observation is really important to help systematically match the right cannabinoid profile with the right patient in the first place. We need to gather the data to help all patients who may benefit now and in the future.
Finally, the medicinals need to be affordable. Unfortunately, the cost will not be covered by health insurance and sick people need to have cannabis as an affordable option. Keeping costs low to ensure patients can participate and access the safe medicinals they need will ensure that Minnesota’s program puts the needs of patients first.
Wyatt averages about 200 seizures every day. These seizures are grouped into clusters throughout the day. Sometimes he cries, seems disoriented or even laughs. They always disrupt his life and his development. I hate them and I am pretty sure he does, too. I usually refer to them as “fucking seizures.” (If he does start talking at some point, I will take full accountability for his bad language.) Technically, these seizures are called infantile spasms.
There are only two FDA approved drugs for infantile spasms. Two. We have tried 10 anti-epileptic drugs and the Ketogenic diet to stop them. This type of seizure was first described by a doctor in 1841 and apparently not much headway has been made for treating them since that time. Ultimately, I think that is part of the reason why it didn’t seem like such a stretch to try cannabis. There really isn’t anything else. We have tried a lot of other things and I know parents who have tried more. A parent of a child with intractable epilepsy would do anything to stop this terrible disorder. It steals our children’s lives right in front of our eyes … every single day.
Below is a link to what Wyatt’s seizures look like. (God bless his teachers at daycare. They endure watching him experience these terrible events nearly as often as we do. Fucking seizures. (Don’t say that out loud at school if you are reading this!))
Wyatt having seizures
Wyatt before infantile spasms
Child Neurology Foundation – Infantile Spasms
Cohort C has been an interesting experiment. We did indeed see the “grace period” during the transition with fewer and shorter clusters.
He has still had fewer clusters (a bit longer though) and his seizures today have been less intense. Interesting. So good results but different results from A.
We are going to try flipping back to A, validate the “grace period” again and then tomorrow try flipping back and forth between A and C every other dose. MxBiotech hasn’t tried this before, but have had multiple patients report similar “grace periods” when transitioning. We are game to try something different like this because we still have a few weeks here to fine tune. Maybe we can capitalize on the positives of both A and C by testing this out.
It takes a couple days of data collection and observations to make these adjustments. Believe me, I wish this was a magic bullet, but as I have explained before, epilepsy and medicine often don’t have a simple path.
Wyatt has been doing pretty well cognitively and developmentally over the past few days. In fact, he discovered himself in the mirror today! This is something we have been trying to have him do since he was about 8 months old. Right now, he is playing with a talking flashlight. He is very alert, vocal and smiley.
However, for whatever reason, he wasn’t very impressed with the beautiful waterfall we saw yesterday. He is a tough sell.
We have learned some interesting things over the past 2 weeks.
1) Wyatt seems to have had the best response on Cohort A
2) His next best days were when we switched from A to B and then back to A again. Interesting.
So, we’ll test out Cohort C next and watch to see if things improve during the transition again and/or see if he generally responds better to C. If he responds better to C we’ll fine-tune dosing of that cohort. If he doesn’t we’ll go back to A and adjust dosing and timing to get the best response we can while we are here.
In other news, our adorable little lab rat has been really happy and alert. He is trying to walk quite a bit and for some reason pulling my hair. (Ouch! We are working on “gentle touch.” He is very gentle with pets, just not his momma.) He is playing with his collection of toys quite independently, too.
Also, the angry outbursts and other possible withdrawal symptoms that had been concerning me since weaning from Onfi (his last benzodiazepine) have been noticeably absent regardless of seizure activity. (Bonus!)