Sorry that it has been so long! I have been away due to the re-emergence of the last sinus infection and Gideon’s winter roller coaster medication/sleep schedule. Gideon has been taking his medications more regularly. He still has days where he only takes his meds once per day. As a result, we have seen more tightening in his legs and thighs. He looks like he has what we call “froggy legs,” as his legs draw close to his body with his knees out to his sides. Some days, the clonus reoccurs in his left leg.
On January 11th, we raised his morning dosage of CBD to 32mg to total 56mg of CBD oil per day. We raised this dose alone, because it is often that Gideon will only get one dose of medication per day with this crazy cycle of his. We hoped we could stave off more of the resulting tightening by ensuring that he gets a higher dose of CBD early in the day in case he does not get his evening dose of medication. It is important to note that many of the effects seen from not having medication twice a day results from his lack of Baclofen and Keppra. While the CBD does help to alleviate those symptoms, as we have seen, Gideon would need a much higher dose to quell all of these problems without pharmaceutical intervention. We are doing this in baby steps for Gideon’s health and safety. As a reminder, although we have been given the “okay” to titrate him down a bit from Baclofen, we have NOT begun to titrate him off pharmaceutical drugs in any way yet. At this time, we are continuing to only look at how CBD complements and supplements him with specific regard to his spasticity and tone issues. We have not begun to investigate using CBD for any of the effects of his epilepsy. You might wonder why. With his seizures being well controlled, we have made the decision to focus on his mobility. Just to see the changes we hope to see with the issues we have set as our current focus, I could see Gideon easily getting up to 64mg twice a day (to total 128mg per day) of CBD. Again, that is without even touching his seizure disorder.
Some might wonder how effective CBD oil really is if a 29 pound, 3.5-year-old boy could get up to 128mg per day and not be close to cutting out his seizure meds as well. As with any health issue, one cannot look at pieces—one must look at the entire picture. Gideon has THREE brain malformations that cover the majority of cerebrum AND seizures. Given these, CBD oil at a relatively low dose has done amazing things.
Before taking CBD oil, Gideon was not rolling over completely. He would not participate in tummy time without therapist/therapeutic assistance until he could roll on his own. Since beginning the CBD oil, Gideon has learned to roll over completely, moves into tummy time on his own, learned to pull up his arms to use in tummy time correctly, holds his head up well while in tummy time position, is beginning to bring up his knees in attempts to crawl, and he even plays with toys while in tummy time position. In less than 90 days, he really HAS made leaps and bounds. This is especially evident when you consider that it took him 2 and a half years to get to what he did before CBD.
Yet, despite his challenges, Gideon is strong and driven. Even without having consistent, therapist-recommended “homework” for Gideon, we have found that he tells us what he is ready to work on. In fact, on January 20th, Gideon pulled himself forward using only his arms! Given what we have seen so far with CBD oil treatment, we expect to see many more gains and wins for Gideon in the future!
Note: The pictures in this post are from the past week or two. They show Gideon standing with very little assistance (lasts about 30 seconds to a minute at a time) as well as his amazing progress with tummy time and how close he is to taking the next step in his journey.
Thank you for reading! Hope your new year is off to a wonderful start! <3