Hope everyone is doing well! We have been riding the end of Gideon’s seasonal roller coaster.
On Sunday, January 28th, Gideon did not have Miralax for a few days and got really constipated. Although children with CP may have a higher tendency toward constipation than other children, Baclofen increases the risk of constipation as well. Since starting Baclofen, Miralax has become a daily necessity. As some of you may know Miralax is polyethylene glycol (PEG). For many reasons, we do not want Gideon on this daily, especially not at half the regular adult dose per day. Since we have the doctor’s blessing to lessen the Baclofen by 5mg per dose (instead of 15mg twice daily, it becomes 10mg twice daily), we will do this hoping that Gideon’s constipation will lessen. Then, hopefully, we will then begin to back off from using Miralax in time.
It is very important that we see that the CBD oil takes over the function of that missing 5mg of Baclofen per dose (10mg per day). If it does not, we will need to increase the CBD oil even more. Although, it is important to note that we DID, in fact, increase his CBD oil for the evening dose to match his morning dose (from 24mg in the evening to 32mg in the evening to total 64 mg/day). We did this to match his doses evenly and to complement the reduction in Baclofen in an even manner. Yet, the increase I was speaking of refers to AFTER this initial bump to level out the doses.
Kaylee and Gideon are now sharing and playing together. They snuggle and play in their own little way. It is a beautiful thing to watch. This increase in activity between Gideon and Kaylee is not solely due to Gideon’s CBD intake. It is likely a combination of their budding relationship and their respective stages of development along with Gideon’s increased mobility from CBD usage.
On February 1st (Daddy’s birthday!), Gideon sat up for 4 minutes unassisted. He even corrected himself if he started to lean. The next day, Gideon reached another milestone and stood up with very little assistance for about 2 minutes.
Overall, we have noticed that Gideon is able to roll over more smoothly, that he is more vocal toward sister, and he plays with his sister more and with greater ease.
The week ending on February 4th Gideon went at least 5 days with only a single dose of his medications per day. Yet on that day, he finally had both doses of medications. He was noticeably looser and moved about more readily.
Gideon got approval for a stander. The model he is getting is in the picture below. We are very excited, but it will take a few months to receive it.
We saw that while he had ridden his dosage roller coaster, Gideon still got around the room more easily and gets further than ever before. He also began to move in new ways. For example, he now brings more toys to his mouth.
On Feb. 15th, Gideon finally had 2 doses again. He woke up the next morning able to move all limbs well, use his core muscles, and vocalize more.
During the week of Feb. 18th, he hit yet another milestone. Gideon played drums and followed the prompts (with his hands, not using the provided drumsticks). He also tried to use a toy wrench on Daddy’s thumb.
On Fed. 22nd, Gideon sat up for half-hour. In that time, he only readjusted 5-6 times and fell over once.
We have seen that Gideon is getting better with his hands. He pulls much more of my hair out (Lol!)! He has begun to try to use individual fingers on his hands.
From about Feb. 16th through Mar. 5th, we have seen lots of waves of Gideon taking 2 doses and switching back to a single dose. It averaged every 3 days or so. Gideon seemed to do very well, though. Still, we worry about unseen seizure activity in the brain. He has had no seizures, but the seizure-like activity may have increased in his brain. It is possible to see seizures if Gideon goes on with only a single dose daily over an extended period. Thankfully these are waves lasting no longer than a week at a time overall.
On Mar. 6th, we decided to increase Gideon’s CBD by 0.25mL (9 mg) per dose, for a total increase of 18mg or 0.5mL/day. The reason we made this decision was because Gideon seems to have growing pains. We were alerted by the symptom of apparent discomfort, but a lack of increased tone (meaning he was not getting any tighter). Since Gideon is currently nonverbal, we based our observations on his age and on his Daddy’s experiences throughout his development. We really saw no other reason, as the medication fluctuation had been steady with no increase in frequency of missed doses. On the second day of the increased CBD dosage, Gideon’s growing pains seemed to have calmed.
We are happy to report that Gideon is now able to get out of a special needs car seat. His ability to sit upright for extended periods of time and his increased mobility have finally allowed for this positive change. This makes us even more excited for the stander because it is clear that he is ready!
To date, Gideon’s Miralax dosage remains nearly the same. To be clear, I did decrease the Miralax dosage, but by about 1/6th of his normal intake. So, it seemed negligible. Yet, it’s a step in the right direction. We are unsure of when we will be able to decrease the Baclofen again. Although, we suspect it will be at his next 6 month visit with his rehab specialist.
Even prior to raising the CBD a bit, we did see that the lowered dosage of Baclofen did NOT adversely affect Gideon. After the small, incremental increase in CBD, there was no noticeable change in Gideon’s ability to move or otherwise. The minor increase in CBD only seemed to help Gideon deal with his growing pains. Honestly, though, that was all we expected from such a small increase, especially when Gideon is still riding his medication roller coaster.
Looking back and considering it honestly, we have realized that when Gideon faced this seasonal medication fluctuation in the years prior to taking CBD, he was much tighter and much less mobile. It is very clear that the CBD has not only increased his mobility but has also helped him to tolerate this seasonal change with more comfort.
Thank you for reading! <3