CBD Oil Tincture Trial: Days 343-377

Hello World!

I just love this picture! We actually caught Gideon in motion. He was smiling and giggling, too.

Well, it has been another interesting month or so. First, Gideon has been using CBD from Hemp My Pet for a full year now! We are so thankful for their generous donations. In fact, we have come to a point where we will no longer be receiving donations. They have done so much for Gideon, but it’s now time for the company to focus on others that they can help. We will continue our monthly blog posts that focus on Gideon’s world and the effectiveness of both the CBD and THC.

The neurologist had us change the way we deliver Gideon’s meds because he was having so many breakthrough seizures (yes, even with the CBD). Now, we give him his meds through a syringe. It is not fun for him or for me. We have to watch more closely for choking as well due to his dysphagia. Yet, as you will see in the notes, he has only missed one full dose since the 24th of October. That’s incredible.

Gideon’s weight finally got past 30 pounds to 31 pounds. Sadly, though, he became ill and lost all that weight again and came down to 29 pounds and 4 ounces as of Friday, November 9th. We will keep working to get his weight back up. Poor Gideon also had many breakthrough seizures for the 2 days he was actually sick. This is common among those with epilepsy, especially if there is a fever. During the incubation period, Gideon did not have seizures, but he did lose his appetite. From now on, I will look to appetite loss as a possible sign of an upcoming illness. Over the last few months, we have tried tirelessly to work with every possible reason for his appetite issues. At this point, we are hoping to see his appetite increase along with his weight like it was doing prior to the onset of the illness. If it does not, we will be at a loss. The scary part is that if he des not gain weight adequately and loses more weight, the doctors may wish to give him a g-tube. We have been trying to keep him from having this procedure unless absolutely medically necessary.

In other GREAT news, Gideon got his Red Card. This card allows him to partake in medical marijuana (cannabis with THC). He is using it for pain, muscle spasms, and epilepsy. Under Colorado law, each of these is sufficient to be eligible for a MMJ card. He is taking 1 mg three times a day. It is a low dose. We hope to see an increase in appetite from the MJ. Although, recent research has shown that this effect comes from THC in concert with olfactory stimulation. This means that it would most likely occur from vaping (not the pen, but the bag type) or smoking MJ. There is no way to control the dosage of THC using these methods and the estimated dosage per hit is far more than Gideon “should” get in a day. So, for now, we may not see this positive change for Gideon. He started using Marqaha 1:1 (CBD to THC) tincture on Oct. 22nd and he will have been using it for a full month by Nov. 19th. So far, we have noticed greater laxity and less reports of pain. He did have pain one day, but it was easily managed using essential oils. He also had breakthrough seizures when he was ill despite being on both CBD and MJ (THC) as well as his Keppra. Dosage could indicate why he still had the breakthrough seizures and pain, but so can other issues within the body. As was suggested, after a full month, we will take Gideon up very marginally on THC dosage to 1.25 mg per dose. Because he is so young and so lightweight, increases should be very small. We have hopes for an eventual release from using any pharmaceutical drugs for his muscle tone/spasticity and epilepsy. Yet, we do realize that this cannot be the case for everyone. Gideon may or may not respond as well as others do. Only time and trial will reveal the truth for him.

The OT has given us the blessing to move him up from 1/8 pound wrist weights to ½ pound, skipping the ¼ pounders. He has done very well so far with no signs of exhaustion. Gideon is using his arms to spin himself around on the floor on his belly! His PT had also said that he has been doing well practicing crawling position with her as well. With his new MJ regimen, we have seen one amazing change other than the complete laxity of his limbs. He puts BOTH arms over his head and leaves them there. For him, this is amazing.

Hope everyone has had a wonderful month!

Thank you for reading!

NOTES:

Day 343 (9th): 1st meds done by 10:05! YAY! Gideon’s leggies, weights, and stretches done by 11:40. Leggies and weights off by 1:49-ish. Leggies and weights back on by 7:30. No stander today, he is not up for it. He had 2nd meds! Leggies and weights off by 9:10-ish. Gideon had 4 bottles and 1 full bottle of KF plus 2 oz.!

Day 344 (10th): 1st meds done by 9:30-ish. Leggies, weights, and stretches done by 11:40. He requested a massage with his exercises because his legs hurt. His weights were on approximately 5-10 mins. before his leggies. Leggies and weights off by 1:50. Leggies and weights back on by 6:01. Stander: 17 mins. Leggies and weights off by 9:12. He had 3.5 bottles and 7.95 oz. of KF (very nearly a full bottle). Out of that, he had ½ of his 2nd meds bottle.

Day 345 (11th): 1st meds done by 10:32. Leggies, weights, and stretches done by 11:34. When made 2nd bottle, used up to 6 oz. of KF (4 oz. for 2nd) and ate only half. When made 3rd, used 2 more oz. Leggies and weights off by 1:43. Had 2nd meds.

Day 346 (12th): Leggies, weights, and stretches done by 11:30-ish. There will be no 2nd meds today. It’s 1:30 and Gideon’s hasn’t finished. He is having teething issues. I think that may be the problem (and on some other days in the past, too). Leggies and weights off by 1:33. Gideon finished 1st meds at 3:08. It confirmed that it was the teething, because his check had just stopped being red. I never ask him if he hurts before his cheeks turn red. Honestly, I never thought to. From now on, I will ask to prevent it from getting so bad that his cheeks turn red. I usually applying diluted lavender essential oil or copaiba to his cheeks and jawline (kids with dysphagia should NOT use anything that numbs). Once it kicks in and helps with the pain, I can get him to eat. If I catch it early, perhaps I can get him to have his meds early enough to have second meds. There are so many reasons he will refuse eating. It’s difficult not to feel like I’ve failed him. SLP is doing the brushing again. She says she’s seen it help kids like him to have faster movements. Leggies back on by 5:58 and weights back on by 5:48-ish. Colored with Gideon. He took the crayon all by himself for the first time. Leggies and weights off by 8:40. Gideon had 2.5 bottles with 6oz. of KF (about ¾ bottle).

Day 347 (13th): Leggies, weights, and stretches done by 11:38. 1st meds done by 1:16. No 2nd meds tonight. Gideon ate 3 bottles and 6 oz. of KF.

Day 348 (14th): Gideon had a tonic-clonic seizure for less than a minute. Had another clonic seizure for only a few seconds. Finished 97% of his bottle by 10:40-ish. Leggies, some stretches, and weights done by 11:45. Leggies and weights off by 1:07. Gideon’s not up for too much today. Must be the seizures. Gideon has not wanted to work on anything today, but he has been spectacular about getting around on the floor! He s trying to hard to crawl. He has found his own way. It’s wonderful! He had 2nd meds! YAY! Gideon had 3 bottles and 9 oz. of KF! That is a little more than a full bottle! Gideon had another t-c seizure this evening. Although it was short, it twisted his poor little body up pretty badly.

Day 349 (15th): Gideon finished 1st meds by 10:10. Leggies, stretches, and weights done by 11:49. Leggies and weights off by 1:52. Leggies and weights back on around 6:15. Stander: 15 mins. Leggies and weights off by 8:22. Gideon ate 2 bottles with 4 oz of KF. He fell asleep before he was hungry for another bottle.

Day 350 (16th): 1st meds done by 9:50. Leggies, stretches, and weights done by 11:19. Leggies and weights off by 1:45. Gone all day at doctors, so no additional therapy or leggies/weights time. Gideon has eaten one bottle w/ 2 oz. of KF, another half bottle w/ 2 oz. of KF, and one more bottle w/ 3 oz. of KF to total 2.5 bottles and almost a full bottle of KF. Had 2nd meds!

Day 351 (17th): 1st meds done by 9:40. Leggies, stretches, and weights done by 11:30. Leggies and weights off by 1:30. Leggies and weights back on by 6:33. Stander: 24 mins! New best time! Leggies and weights off at 7:22. No second meds, because he fell asleep before we had a chance. Gideon had 2 bottles and 5 oz. of KF.

Day 352 (18th): Gideon finished first meds by 10:15-ish. Leggies, stretches, and weights done by 11:25-ish. Leggies and weights off by 1:34. Gideon has 2nd meds! He has eaten 3 bottles and 7 oz. of KF (almost a full bottle).

Day 353 (19th): 1st meds done by 10:25. Leggies, stretches, and weights done by 11:48. Leggies and weights off by 1:31. Gideon did the Nosey Cup today with his SLP. She said we are moving toward finding out what form(s) of communication may work best for him. Leggies and weights on by 6:56. Stander: 12 mins. Leggies and weights off at 9:42. Gideon ate 3 bottles today and had 8 oz. of KF, almost a full bottle. Unsure if he had 2nd meds, forgot to notate.

Day 354 (20th): 1st meds done by 10-ish. Leggies and weights on by 11:03. Leggies and weights off by 2:24. Leggies and weights back on by 7:30-ish. Leggies and weights off by 8:51. Gideon ate 2 bottles and 5 oz. of KF. No 2nd meds.

Day 355 (21st): Gideon had a clonic seizure. No 2nd meds, because first not finished by noon. Leggies, weights, and stretches done by 11:55. 1st meds done by 12:15-ish. Leggies and weights off by 1:29. Gideon had 3 bottles, 1 full KF.

Day 356 (22nd): Gideon got his red card today! 1st meds finished by 11:43. Won’t have 2nd. Leggies, weights, and stretches done by 11:57. Leggies and weights removed by 2:05. Leggies and weights back on by 5. Leggies and weights off by 7:45-ish. Had 1st dose of 1 mg of THC (adds 1mg more of CBD per serving). Gideon had 3 bottles and 8 oz. of KF. No 2nd meds. MJ seemed to make it easier for him to move and do so more smoothly. He also vocalized more. He demanded a half bottle more of food.

Day 357 (23rd): 1st dose of MJ around 9:10. Leggies, weights, and some stretches done by 11:09. No 2nd meds yet again. Leggies and weights off by 1:33-ish. Gave Gideon 2nd dose of MJ around 3:03. Finished first meds just before 5. Leggies and weights back on by 6:25. Leggies off by 8:21-ish. Gideon ate 1.5 bottles and about 3 oz. of KF. I’m guessing he was drowsy today (he didn’t show it out right, lots of verbalization and movement). He didn’t get his 3rd dose of MJ and no 2nd meds.

Day 358 (24th): 1st dose of MJ by 8:57. 1st meds done by 9:47. Leggies, weights, and stretches done by 11:22. Gideon was WAY more flexible than he has ever been. He even said we could do 10 reps of the exercises. It has been a while. Gideon is using his arms to spin himself around on the floor on his belly! 2nd dose of MJ around 3:30. Leggies and weights off by 3:33. Leggies and weights back on by 7-ish. Lots of vocalizations. Seems a bit hungrier. Saw neuro today. Said we need to try to find the pattern in his meds issue for his seizures. Then, we will decide if we need to increase the dosage. I just reviewed Gideon’s pattern of having second meds. It was not so cut and dry. If I had to make an educated guess, it would seem that a combination of stress/pain, missed doses, and lower number of feedings seem to contribute to the likelihood. I have no idea what the doc will say when I report that. He had second meds. Leggies and weights off by 9:04. Gideon had his 3rd dose of MJ by 9:25-ish. He ate 3 2/3 bottles and over 7 oz. of KF. He had second meds.

Day 359 (25th): The neurologist has insisted that we try the syringe dosing for his meds unless we see significant danger in doing so (such as choking on a regular basis). 1st dose of MJ at 9:03. 1st meds done by 10:23. Leggies, weights, and stretches done by noonish. Leggies and weights off by 1:50. Gideon took his 2nd dose of MJ by 3:15-ish. He had his second meds by a special mix I put in a syringe. It was a request from the doc’s office that we attempt this. It worked well. I still worry about his swallow issues and choking. He had his 3rd MJ dose around 9:15. Gideon ate 3 bottles and 9 oz. of KF.

Day 360 (26th): 1st dose of MJ by 9:04. 1st meds by 9:24 via syringe. He lost a good portion to spitting, just like I told them would happen. Leggies, weights, and stretches done by 11:05. Leggies and weights off by 12:52. Gideon had his 2nd dose of MJ by 3:48. Leggies and weights back on by 5:07. Stander: 6 mins. Leggies and weights off by 8:52. Had second meds. Gideon ate 2 bottles and 5 oz of KF. Felt like I was trading eating for meds…

Day 361 (27th): 1st MJ dose done by 9:33. 1st meds done by 11:20. Could not do the syringe. Too much spitting. Leggies, weights, and stretches done by 12:08. Leggies off by 2-ish. Missed 2nd dose of MJ. 3rd dose of MJ around 7:35. Leggies and weights back on by 7:40-ish. Leggies and weights off by 9:50. Had second meds. Gideon ate 2 bottles and 5 oz. of KF.

Day 362 (28th): 1st dose of MJ by 9:10. 1st meds done by 9:55 by syringe. Choked once. Too thin. Thinking that if we must continue, I should use yogurt like last night. Leggies, stretches, and weights done by 11:13. Leggies and weights off by 1:34. Missed 2nd dose of MJ, but 3rd at 6:23. Leggies and weights on by 6:38. Stander: 13 mins. Had second meds. Gideon ate 2 bottles and 6 oz. of KF.

Day 363 (29th): 1st MJ dose at 9:27. 1st meds done by 10 via syringe (no choking). Leggies, weights, and stretches done by 11:40. Leggies and weights off by 2:14. 2nd MJ dose at 4:22. 2nd meds done. Did not keep track of feedings, but think it was 2 bottles and 5-6 oz. of KF.

Day 364 (30th): 1st dose of MJ by 9:06. 1/2 of 1st med by 9:30-ish. The rest have to go in the bottle. He spat constantly. Finished 1st bottle with rest of meds by 10:33. Leggies, weights, and stretches done by 12:15. OT ok’d Gideon going up to ½ weights. Said to use both 1/8 pounds on left hand if it seems like he won’t use it as much. Leggies and weights off by 2:49. May be eating less while adjusting to MJ, as nausea is common with new MJ users. Then, later after adjusting, they see the increased appetite effect. We will keep an eye on this. So far, he is looser and does not seem to be in as much pain. Hasn’t had any seizures, but also getting his meds more regularly. 2nd dose of MJ at 3:07. Leggies and weights back on by 6:07. Stander: 7 mins. Leggies and weights off by 8:19, using the new weight (0.5 lbs.) for 2 hours. Awesome! 3rd dose of MJ at 9:09. At 2/3 of 2nd medicine bottle. Gideon ate 2 2/3 bottles (one very large) and over 1 bottle of KF.

Day 365 (31st): A YEAR ON CBD! Gideon had 1st dose of MJ by 9:10. Gideon told me he was hungry. So, instead of the syringe, I opted to make a tiny bottle with meds and another with food. It was a fight in which nothing was eaten. So, I don’t know what else to do. I can’t use the syringe now, because the meds are too diluted. It would take an hour and he would spit with the attitude he has right now. I just mixed the 2 bottles and hope he eats within a decent time frame. I doubt it, though. Weights, leggies, and stretches done by 11:36. Leggies and weights off by 2:15. 2nd dose of MJ by 3:12. Leggies and weights back on by 5:46. Leggies and weights off by 8:22. 3rd dose of MJ at 9:13. Gideon at only 98% of a bottle and about 3 oz. of KF. He ended up missing his 2nd meds. I guess until he gets through this phase, I will keep doing the syringe thing. Sigh.

Day 366 (1st): 1st meds and 1st dose of MJ by 9:28. Leggies, weights, and stretches done by 11:51. Leggies and weights off by 2:17. Leggies and weights back on by 7:25. 2nd MJ dose by 3:06. Had 2nd meds. Leggies and weights off by 9:07. 3rd dose of MJ at 9:11. Gideon ate 2 bottles and 6 oz. of KF.

Day 367 (2nd): 1st meds and 1st MJ dose by 9:13. Gideon has lost 1.2 lbs. Hopefully, as he acclimates to the MJ, this will subside. Leggies and weights on by 11:50-ish. Leggies and weights off by 2:38. 2nd dose of MJ at 3:30. Leggies and weights back on by 8: 17. Leggies and weights off by 9:50. 3rd dose of MJ by 9:58. Ate over 2/3 of 2nd meds bottle. Gideon ate 2 2/3 bottles and over 6 oz. of KF.

Day 368 (3rd): 1st meds and 1st dose of MJ by 10:05. Leggies, weights, and stretches done by 11:36. Leggies and weights off by 1:46. Had 3 tonic-clonic seizures so far related to fever. Low grade fever of 100.1 at 1:55. Fever down to 99.2 at 2:59. Per on-call neuro, gave Gideon extra dose of Keppra at 3:41. 2nd dose of MJ around 4:04. I think Gideon’s lack of eating arose from him getting sick. He doesn’t get sick very often, but when he does, his appetite wanes. Had second meds (not including the extra dose of Keppra). 3rd dose of MJ at 10:06. Gideon has eaten nearly 1 2/3 bottles and 2.5 oz. of KF. Had a total of 5 seizures.

Day 369 (4th): 1st meds and 1st dose of MJ done by 9:55. Leggies, weights, and stretches one by 12:16. Leggies and weights off by 2:11. 2nd dose of MJ at 4. Leggies and weights back on by 6-ish. 2nd meds by 8:41. Leggies and weights off by 8:54. 3rd dose of MJ by 10:09. Gideon ate 2 1/3 and 5 oz. of KF. (3rd bottle had 3 oz. of KF). Had 2 seizures.

Day 370 (5th): 1st meds and 1st dose of MJ by 9:25. Leggies, weights, and stretches done by 11:40. Leggies and weights off by 2:20. Gideon had second dose of MJ by 3:28. Leggies and weights back on by 6:45. Stander: 1 min. Wasn’t really into it. Leggies and weights off by 8:46. 2nd meds done by 8:30. 3rd dose of MJ by 9:37. Gideon ate 3 bottles and 7 oz. of KF.

Day 371 (6th): 1st meds and 1st dose of MJ by 9:20. Leggies, weights, and stretches done by 11:52. Leggies and weights off by 2:08. 2nd dose of MJ done by 3:20. Leggies and weights back on by 7:05-ish. Stander: 14 mins. 2nd meds done by 7:45. Leggies and weights off by 9:20-ish. 3rd dose of MJ by 9:25. Gideon ate 1 ¾ bottles with over 5 oz. of KF.

Day 372 (7th): Weighed Gideon this morning. He gained about al half a pound since Friday. That’s great news! 1st dose of MJ and 1st meds done by 9:36. Leggies, weights, and stretches done by 11:36-ish. Leggies and weights off by 2:10. 2nd dose of MJ by 3:29. Leggies and weights back on by 5:42-ish. Stander: 5 mins. Had second meds. Leggies and weights off by 8:15. 3rd dose of MJ by 9:30. Gideon ate ALMOST 1 bottle and 3 oz. of KF.

Day 373 (8th): 1st dose of MJ and 1st meds by 9:22. Leggies, weights, and stretches done by 12:01. Leggies and weights off by 1:25. 2nd dose of MJ around 3:28. Leggies and weights back on by 6:05. Stander: 5 mins. Had second meds. Leggies and weights off by 9:26. Last dose of MJ by 9:27. Gideon ate 2 1/3 bottles and somewhere around 7 oz. of KF.

Day 374 (9th): 1st dose of MJ and 1st meds done by 9:26. Leggies, weights, and stretches done by 11:59. Leggies and weights off by 1:03. 2nd dose of MJ by 3:23. 2nd meds done. Had 3rd dose of MJ by 9:27. Gideon ate 3 bottles and about 7 oz. of KF.

Day 375 (10th): 1st dose of MJ and 1st meds done by 10. Leggies, weights, and stretches done by 11:57. Leggies and weights off by 2. 2nd dose of MJ by 5:46. Leggies and weights back on by 7:28. Had second meds. Leggies and weights back off by 8:56. Gideon ate 1 ¾ bottles and about 5 oz. of KF.

Day 376 (11th): 1st dose of MJ and 1st meds by 10:07. Leggies, weights, and stretches done by 12:20. Leggies and weights off by 1:28. Laid with both arms above his head comfortably. 2nd dose of MJ by 4:10. Leggies and weights on by 5:59. Stander: 14 mins. We spun him around like we were dancing, and I took him on a walk in the stander. 2nd meds done. Leggies and weights off by 8:55. 3rd dose of MJ by 10:07. Gideon ate 2 1/3 bottles and over 6 oz. of KF.

Day 377 (12th): Last day of Hemp My Pet CBD. 1st meds and 1st dose of MJ done by 9:34. Leggies, weights, and stretches done by 11:39. Leggies and weights off by 2:06. 2nd dose of MJ by 3:45. Leggies and weights back on by 5:53. Stander: 11 mins. He had second meds. Leggies and weights off by 9:04. 3rd dose of MJ by 9:45. Gideon ate just over 2 bottles and more than 6 oz. of KF. As far as the syringe dosing goes, he still spits every so often, but he does not seem to choke very often. So, we will continue this method for now.

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