It has been an interesting few days. To explain, I will have to give some background.
If you aren’t familiar with cerebral palsy, you may not know that it’s a spectrum, in a sense. It is a blanket term for brain damage that shows one (or some combination) of a few different sets of symptoms (like subtypes based on how the CP is expressed in the individual). Simply stated, it’s a diagnosis, NOT the actual problem. In Gideon’s case, he has 3 brain malformations (lissencephaly, polymicrogyria, and pachygyria). These terms describe the unusual ways in which the brain is shaped. If your brain is shaped differently than what is considered normal, a variety of problems could result in varying degrees. Since you can never reshape the brain into its “proper” form, one must learn to adapt. Often, therapies aim at teaching people to do things the “normal” way or modify the individual’s own way using tools and equipment. I think that while it makes sense to try to teach them to do things as close to “normal” as possible, some people adapt independently of their therapies. I am not saying they don’t make progress with their therapies. What I am saying is that the brain is plastic (e.g., neuroplasticity). If it is not wired to do something, it will wire itself in its own way as it learns. I think this neuroplasticity will (or does) help some people to be able to find work-arounds, in a sense, to deal with their unique world.
Why am I explaining this? Well, it leads in to the reason for this hiatus in writing. Gideon has a unique cycle, like he manifested his own adaptive circadian and metabolic rhythms to suit his unique needs. Gideon has a few personal “internal clock”-like cycles that tend to freak out doctors.
The first example I would like to use is his growth chart. Most people have a nice rounded curve. I recently described Gideon’s as a sine wave, shown in the image to the right. Although, I should elaborate because that is not a great analogy. It is like the sine wave, but it also climbs like a stock market graph showing a general uptrend (as shown in the image below).
So, if you can imagine combining these 2 images into one, then you understand what I mean and why doctors who only see him every 6 months may seem alarmed. Doctors often think his weight loss is worrisome, but soon after he will gain enough weight to weight more than the period before the loss. Think of it this way: he did weigh 25lbs., then he lost 2 (so, now 23lbs.), but he gained back 5 (so now, 28lbs.). Despite the weight loss, he had a net gain of 3 pounds in that example. Gideon also has these periods, during the fall and winter, in which his entire eating and sleeping cycles are in total disarray. Yet, it happens every year. He will go to bed later some nights or go bed early on others. The same inconsistency happens with his eating. On days that he sleeps more (like a hibernating bear, lol), he eats less and may miss doses of medicine (waking him for medicine almost always fails). No amount of attempting to force a schedule has ever worked. We have learned not to freak out like the doctors. Why? We believe it is adaptive, something his entire body system does to adapt to the brain malformations and the accompanying differences (problems).
You might be wondering why we don’t think this results from illness or any other underlying problems. Well, there are no signs of illness whatsoever. His blood (and organ function) is checked frequently due to his medications. He is seen at many doctors very regularly. No one has ever found any pathology. It just is. In my opinion, with my light background in neuroscience; psychology; and nursing (including one amazing class from my anthropology minor, brain evolution), it makes sense that Gideon’s brain and body found adaptive ways to cope with his internal and external environments.
So, we have had a day and half of this strange cycle. We learned quite a bit about CBD’s effects on this cycle and on Gideon in general.
He did miss a full day’s worth of medicine bottles (both 1 and 2) due to him sleeping a lot and not eating as much in this period. Despite this, there was no obvious seizure activity (there are forms of seizure that are difficult to catch, but we are vigilant and watchful), he was not NEARLY as tight as he would have been without CBD being part of his supplementation, he was not unhappy or uncomfortable, and he slept very peacefully. This morning he simply just started eating and taking his medications again as if nothing had happened. It was incredible to witness!
A few hours after he took his first dose of meds after his hiatus and hibernation, Gideon did something simply wonderful. Gideon rolled over into tummy time position and did a full 360° circle! He used his legs and hands trying to crawl and this is the way his body made its
attempt. This is the first time he has ever accomplished something like this! This really was his first time making a successful attempt at moving from a crawl-like position.
Today, Gideon had therapy. She was stunned by his mobility. She could move him from side to side laterally (think about your ribs moving as if reaching for something directly to your left or right). He could express himself more easily. He also had smoother and more frequent vocalizations. His whole body was not required for him to be able to make those sounds (without CBD, he uses most of the muscles in his body to produce sounds—hard work!). He could make clearer choices (from Choice A or Choice B) and play more easily using his hands and fingers. It was a great session!
We told Gideon that the next time he eats a medicine bottle, we would let him try to eat solid foods again. Every so often we try and since he has been back on CBD, Gideon has really been expressing interest in trying again. We recently got chocolate frozen yogurt. Gideon has a sensory issue with very cold foods, but we figured the reward of sugary goodness might be worth it. Also, it melts quickly, so we don’t need to worry about chewing. Choking and aspirating is always a factor with thin liquids (the melted froyo). Due to complications of the CP (and brain malformations), Gideon has some swallowing problems and thin liquids are a challenge. So, of course, we are very careful. We have previously discussed with Gideon’s therapist that his jaw and face muscles need to relax more to be able to open his mouth enough to accommodate a spoon (not to mention a toothbrush). We had figured that since the spasticity has lessened in the areas that have spasticity (and we have recently had very successful toothbrush sessions that include tongue brushing), he should be able to open his mouth enough to accommodate a spoon. We were proven correct! He ate the bites that got far enough into his mouth without spilling a drop! Succeeeessssss (*Dexter’s of Dexter’s Laboratory voice*)!
Our final piece of good news is a follow-up on Gideon wearing his hand and leg braces for longer than an hour. He made it past the 2-hour mark without any skin redness. It was amazing.
All in all, despite Gideon’s cyclical strangeness (said with LOVE), he is doing very well. CBD really is enhancing Gideon’s ability to interact with and be a part of the world. Words really cannot express how happy we are for this trial.
Thank you for reading! <3