Gideon is doing well settling into this dose. He is still loose and learning to adjust to his newly-acquired mobility. While it is not where we want to peak regarding his muscle tone, it is a great starting place to allow him to adjust. For those of you who do not know Gideon’s full story, he only has high muscle tone (hypertonic/hypertonia) in his limbs, neck/shoulders, and face/head. His core muscles are too loose (hypotonic/hypotonia). So, it is critical to allow him to figure out how to use his body in this new state.
I am thankful that, in writing this, his hypotonia has been brought up. This is one factor that I did not focus on initially. For the rest of the evening and throughout the trial, we will make sure to look at the effects on Gideon’s hypotonia. Logic and hope dictate that we would see an overall balancing of muscle tone. Of course, it is possible that it simply has a muscle-relaxing effect. This is not completely favorable as Gideon needs balance in his muscle tone, not just relaxed muscles. If it is simply a muscle-relaxer, then we should see increased laxity in his core muscles (those with hypotonia), which would make it even more difficult for Gideon to control. Then, we would have to take that into consideration for any medication adjustment. It should be noted, though, that even if it is strictly relaxing the muscles, this is incredibly valuable medicinally for Gideon and anyone else who needs it. This effect would not be a negative. It is simply something we must look at for Gideon’s case.
Last night, we noticed that around the 12-hour mark, Gideon starts to become stiff. The stiffness returning indicates that the dose has worn off (much like needing multiple doses of any pharmaceutical drug daily). Although, we found it interesting that even though it had worn off, he was still looser than on days without any CBD at all. We discussed and agreed to adding an evening dose. We did not want to do two 16mg doses, though. With respect to dosage, it is common to find the lowest effective dosage. So, to start, we chose to add 8mg in Gideon’s evening medicine bottle.
Why would this be important for someone like Gideon? The idea is that if he is loose at night as well, he won’t reinforce poor body positioning with his high tone. Let us not forget that with Gideon’s poor communication (again due to his high muscle tone and perhaps other unknown factors), we do not often know if he is in pain when he is experiencing this tightness. It could easily be assumed that he is in pain, at least occasionally, because of some of his facial expressions. Also, if you think about your own muscles being tight, you probably remember associated pain. If he is in pain and tight while he sleeps, he will not rest as well. This hinders cognition, growth, and more. More than anything, we just feel he deserves comfort. For 3 years, he has lived life as though he was a plank of wood. He has struggled through learning to fight against his natural muscle tone problems. He has probably experienced some form of pain the entire time. Our sweet baby boy shouldn’t have to feel as though comfort is a luxury. Yet, it is. So, we will carefully watch how the 8mg dose affects him. We will not rush to increase his evening dose unless he still seems terribly stiff. Yet, for at least a few weeks (usually 2), we will not increase it above a 32mg daily maximum.
Why not? Even though it may be safe to increase the dosage in a shorter time, it is always smarter to watch and carefully observe the changes and how the person is adjusting. If Gideon still seems unsure of his movement after 2 weeks, we will continue at that dose until we (the therapists, doctors, etc.) feel that he can or should increase his dosage. Please note that all plans and changes are given to his neurologist (though they refuse to advise us on treatment) and his other doctors/therapists.
Thank you for checking in on our progress and learning a little bit more about Gideon! <3