When Ryan was in the hospital for pneumonia over holiday, he was put on seizure medication. Sue and I were highly skeptical if he did, in fact, need this. The Neurologist who prescribed this didn’t really take the time to learn Ryan’s case. He went off a ten minute clinical assessment while Ryan was in distress. Yet, it was worth seeing if Ryan’s behavior changed.It didn’t. So, we began weaning him several weeks ago. Yesterday he was off it completely. As I suspected, there was no observable adverse effects throughout the weaning period. The medicine has a six hour half-life i.e., 50% of the medicine is gone at 6 hours. 75% is gone at 12 hours, 87.5% is gone at 18 hours, and so on), so it was completely out of his system by yesterday afternoon.
The significance of removing him from the medication is it tends to to make people lethargic. This is desirable if someone is seizing. It quiets the brain. You can see why we were eager to see if Ryan could do without. We need his brain active.
What we are constantly faced with doctors who have oftentimes competing objectives. For example, one doctor wants to excite the brain while another wants to calm it. Early on, I had to step in and be the overseer of finding the best balance, for Ryan’s sake. It’s not without risk. Pulling the trigger on when to administer an antibiotic is mind-numbing. Sensing when to lower his dosage of baclofen is critical, else he potentially storms.
So far my instincts are correct. But, I can tell you I spent many a sleepless night watching him closely. Looking for the slightest change in his condition. Keeping all the measurements of probes attached to his body in clear view. I’m so tired of looking at LED displays.
I’m hoping to put out a video sometime today. I make no guarantees on the production quality. My thought is to just start recording and let it run, unedited. Since I’m flying solo on this, the camera will remain stationary and use a wide-angle.
I tried to do this yesterday to show a transfer from the HBOT to his chair. I swear I pushed the record button, but it didn’t start recording until I pushed it again (thinking I was stopping the recording). So, what I did record is how I appear when I’m utterly confused. It wasn’t pretty…
Hope that without the med that things will change for the best! Sometimes Drs seem to put people on meds without checking.
Gail Doyle says
Dear Ken, Glad you went with your instincts,you know Ryan better than anyone (even some drs.). That’s strong medicine to be on and I hope Ryan shows some improvement off it. May God help you and your family to get through until Ryan is all better.. Gail
Ken, Sue, Kari and Ryan~
This is wonderful news! I shared with Sue the other day about the one thing I have learned is that doctors are human, they make mistakes, and that we as parents or patients have to go with our gut. Please do the video, what a way for us to watch Ryan as he improves. Much love to all of you~
Cheryl Onderchain says
You continue to be Ryan’s best advocate – as if we would expect anything less ; )
I hope you and Ryan have a good day, Ken. Keep fighting the good fight. We are… Team Diviney.
(I want to get over to see Kari before she leaves, btw.)
Jo Hobbs says
Well, hey, Cheryl, you could go over this evening and take a cold pitcher of Margaritas! LOL
I have always said that if any of us would be on the enormity of meds that Ryan is mandated to be on, that we would have a tough time of it. Really. I don’t do well with a very small amount of meds, if any! Imagine how Ryan would be if he didn’t need all of it. I pray that day comes, very soon. As usual, Ken, your love for Ryan is exemplary. Thank you for reminding all of us ‘out here’ how important it is to be thankful for what we have, and likewise, to pass on the blessing of prayer to such an incredible people like your family. God is working, and we are ready to pray through Ryan’s miracle.
Awesome! So are you are next Steven Speilberg? I want your autograph!! Keep doing what you’re doing. You’re an awesome caregiver and an even more awesome dad!!!
Bravo, Ken, bravo on the videos!! Excellent!! As my mother would say, “Good show, mate!” Keep rockin’ it, Ken. Keep it up, and I might have to call you a total bitchin’ rock star from Mars. Hope you and your family enjoy a happy Friday!! Love & prayers, Paula
Jo Hobbs says
Paula, you’re a scream! Yep, Ken, Happy Friday means Margaritas or a good wine to celebrate the week! Someone, please send over a good cheese and some gourmet crackers. All right!!
Jo Hobbs says
I must begin by saying, “You are always good for a laugh!” LOL Thank you, Ken. But we want to see that video!!
Don’t be surprised when you begin getting letters and emails asking for advice. I think you know more than any of the pharmacists — around here at least! Ask 3 different pharmacists, and you will likely get 3 different answers!
You are the best dad Ryan could have; I don’t know how you do it, and I will just note here that I pray for you to keep on keeping on every time I pray for Ryan, and that is many times throughout the day. Prayers always for the Diviney Family ALL.
Karen S. says
Ken: Our son was put on anti-seizure medication right after his accident. He was kept on it throughout his stay at Helen Hayes and at the Northeast Center even though he had no seizures whatsoever. It was not until we asked (more like said please, please start weaning him off) that he was taken off the medication. He had no adverse reactions at all. Once again, you are doing the right thing.