We are taking weekends off to take care of and spend time with family. Usually, I won’t be taking Fridays off from writing, but this weekend has been especially busy. So, welcome back and here’s the news!
Every so often, maybe once every couple of months, Gideon takes a day where he rests more than he does anything else. He seems to sleep the day away and eats very little. We take in stride, as we have mentioned this to doctors. Since there’s no illness or other symptoms, it does not persist longer than a day, and it only happens every so often, we have not looked further into why. I have been trying to find a pattern, but to no avail. We are beginning to wonder if it has anything to do with his new (as of Nov. 2016) epilepsy diagnosis.
Gideon had one day like this over the weekend. He slept so much that he missed his second dose of ALL his medications. He DID NOT have any seizures due to his missed dose of Keppra. He DID NOT wake up stiff, even though he missed his Baclofen and CBD. Gideon was not ill in spirits, although he missed his dose of P5P (AKA PLP) form of B6 (often used to deal with Keppra rage and a few other known side effects). All in all, I would say that he definitely fared better than he would have without the CBD oil.
Gideon has continued to acclimate to the dosage. He loves to play and experiment with his motor ability. He is full of smiles and laughter. Gideon has also continued to experiment with new sounds. He continues to sleep more soundly as well.
I believe he will need an increase in dosage, but it probably won’t be for month. He really needs to begin to learn to use his muscles (now that he can) before increasing the dosage. When you think about it, Gideon’s arms and legs were always stiff and tucked to his body. He has always worked to fight against this, despite Baclofen’s assistance (off-label use of a drug not meant for kids his age with cerebral palsy to deal with muscle spasticity, e.g., his tightness). You might think of being bound by tight rubber bands with your arms and legs bound like a turkey and trying to learn to move with those restrictions (and the same went for his poor little hands). Now, with the CBD, there is laxity there and he has never experienced such laxity before. He can truly use his muscles correctly, instead of simply fighting the spasticity.
In that vein, Gideon has been moving his body more easily into tummy time position and staying there for longer periods of time.
While he has still had days of increased drooling, overall it has lessened. Also, since being on Keppra, Gideon has had a few rough areas of skin that seem like keratosis pilaris. After being on CBD for a few days, Gideon’s skin has smoothed and softened. Of course, this action could be from a number of hemp-based constituents found in the oil. Either way, I am pleased.
Gideon also seems to better tolerate things that used to bother him due to sensory issues. Although they are only vague to us, as he cannot communicate what bothers him, I am speaking about those of which we have identified. For example, he actually slept through nail trimming! For Gideon, that is BIG! Today, we tried another bath in his bath chair. He is just starting to be able to handle being in the bath. He used to scream in horror the entire time. Normally, due to sensory issues, he received bed baths. His last bath went well prior to the CBD. Today, this bath also went well, but he tolerated cleaning his ears better and his body moved more easily as I maneuvered him. I turned on the shower accidentally for a split second and he did not scream, he only tensed and blinked rapidly. This was amazing! Usually, this would be enough to set him into a screaming fit. While we are not looking at CBD to have any effect on Gideon’s sensory issues, there is some evidence that it has, and I cannot figure out why. It could be as simple as him simply being more at peace since he has been on this CBD trial.
**On a side note, at the time Gideon was on his initial trial of Keppra, we noticed that some of his spasticity (muscle tightness) lessened. It struck his neurologist as odd, because Keppra is only supposed to act on seizure activity in the brain. The doctor remarked that perhaps some (definitely not all) of his spasticity arises from seizure activity. I am currently ruminating on how that tidbit of information might apply to CBD (other than its apparent uses for epilepsy and CP) and how exactly spasticity arises from the brain. Also, his neurologist said that CBD should not affect his EEG (electroencephalogram). I am unsure of how he could say that given that CBD does hinder seizure activity in the brain. His upcoming EEG will look at how well his recently-increased dosage of Keppra is managing the seizure activity. Before starting this trial, we were going to hold off on giving Gideon the CBD oil until after the EEG was done, so as not to skew the results. The doctor still gave us the green light, though, and we went forward with this trial. Much of the neuroscience is plaguing me, though. These questions, among many, are those I am using my academic resources to try to understand. I will report on these as I learn more.**
Thank you for reading!