A day without seizures is generally a very good day in this house. We really do try to celebrate the spells of time in between the lengthy tonic episodes that pretty much turn the household upside down no matter how many hundreds we have been through. Anyhow— we have been pretty fortunate during this disaster of a year, 2020, to have some blessedly long spells between said seizures. Today's version of a shitshow is related to seizures for sure—but a tonic seizure was not the cause.
Since the start of the pandemic, Barry and I have become accustomed to staying in bed later in the morning. I mean—what exactly are we rushing to do? As long as I can hear the easy conversation between Michael and my Mom sipping their tea and eating breakfast downstairs, I know I can laze around for another half hour.
This morning, Meaghan poked her head in our room around 9 just prior to starting her workday from home, to announce Michael had taken a lot of meds this AM. And by a lot— she meant the whole day's worth. Morning, afternoon, and night. Normally if Mike mistakenly takes two times worth from the med box (infrequent occurrence) I don't get very excited. He is, aftercall, not pharmacologically naïve as his peds neuro used to point out to me. However, the prospect of what might happen when 3600 mg of Felbatol, 50 mg of ONFI and 600 mg of Lamictal were taken all at once was frightening. I asked him what happened. Standing there towel-clad in the bathroom, having just gotten out of the shower (thank you Jesus) in between saying "I feel so stupid" multiple times—he said he thought today was Friday and took his Friday morning meds. Then, he noticed that Thursday's meds were still in the med box and took two doses because he didn't want to upset his parents. Another thank you Jesus or whatever moment, that he didn't take all three. He then proceeded to tell me he didn't feel dizzy until he was showering. Thank you...
I contacted his neuro and left a message. I was not about to bring him anywhere close to a hospital but wanted assurance we could just ride this out. Barry and I walked him to his room and I instructed him to stay put in bed and yell if he needed anything while I gathered phone, laptop and coffee so I could plant myself bedside. A few minutes later, and I truly mean 2-3 minutes, there was a series of thuds from upstairs. I dashed up the stairs barefoot, tripped somewhere between the landing and Michael's room and arrived at the room in time to try to hold him steady as he was starting to throw up. Barry and Meaghan showed up right behind me and we got him into the bathroom where he could vomit. Barry stood beside a kneeling Michael and I went into Meaghan's room and plopped my face on her made bed while I took some deep breaths and willed my heartrate to slow. Ten minutes later, Barry and I literally dragged Michael back to his room and hoisted him to bed. All this time he was talking coherently though drunken-like and could still answer questions. It was clear by now that this would be a long day.
Michael's neuro called for the second time about 5 hours in. By then he was extremely hard to understand, but could still state his day and year of birth and he'd puked bile into a bucket at least a dozen times. She felt that because he could understand and follow commands, we were headed in the right direction. She noted that when he joked, we'd probably be in the clear. She is just so smart, and calm and kind—I pretty much was sure all would be well after that call. About 4 pm when Michael was trying to go to sleep he said something. I walked over to his bed and said "I didn't hear you". He said, " Donald Trump is an idiot". I let the doctor know. She said, "excellent". Michael slept for a while. He woke up and announced "I'm talking better now". Indeed. He was.
It's after 5 now. All is well. The shitshow is over for today. Thank you...
Thursday, July 30, 2020
Friday, April 3, 2020
When COVID 19 and Routine Medical Care Collide
My 92 year-old Mom extended her stay with us due to the COVID 19 invasion of our country. Prior to extending she had a suitable supply of her daily blood pressure medication. During her stay here, her Primary physician quit working for the large health care system that had taken over one of the local hospital systems in her community. More on THAT another day. Anyhow...I set about finding how I could get her prescription with 0 refills filled before we ran out of pills.
I called the office of my own Primary MD who my Mom has seen several times over the years for a variety of reasons. He works in a large academic health care system in my community where I was employed for over 20 years. More on THAT another day.The extremely kind person I spoke to did her best to accommodate us. Obviously my 92 year-old Mom wasn't going to be visiting any type of health care facility. Goodness, we've handled her like fragile crystal since the competent leaders of my city and state issued stay- at -home policies several weeks ago. (It's nice to live in an enlightened area). So, I was informed that because my Mom hadn't seen aforementioned Primary in 3 years, she "fell out of" his practice which was now "full". (Isn't that amazing? No need to see an MD all that time she has spent here in the past few years!) Because I am aware that our health care system such as it is, is under great duress at this time, I chose not to beg, yell or try to use any connections to convince this awfully nice woman to get my, my husband's AND my son's Primary to fill a damn prescription my Mom's been on for forty plus damn years.😡
Anyhow...with a weak promise to try and get a doctor to agree to call in the script before her med runs out, my pleasant connection to health care offered to set up a video visit ("there will be the same co-pay" she said). I agreed. We set one up. So next week several days after the med runs out, we'll see how it goes with the doc who has never seen my mother, talking to my mother through the computer screen. Yeah. We'll see how it goes. 😆 And, there'll be more on THAT another day.
Meanwhile...(apologies to Colbert) Meaghan offered to call my Mom's former MD's practice back east to see if another MD in the practice would be willing to prescribe the med and call the pharmacy based upon the knowledge my mother had seen the doctor in the fall and she's been on the SAME DAMN MED for over 40 years. I have to say Meaghan was pretty full of herself when she reported how quickly she had been able to resolve this situation that had frustrated ME so much. Later in the day prior to picking up our take-out dinner, Meaghan and I stopped at the pharmacy to get the medication she had managed to get ordered so easily. Not there. No call. No order. 😑
So, today, Meaghan hit the phones again, talked to someone she deemed to be capable---(she even looked my Mom's record up)---and she assured Meaghan she would get one of the doctors to call in the prescription. THIS time, THIS call worked. The med will be ready for pick-up down the street within hours-who knows-maybe minutes. 😁
This is just one little tale of how COVID 19 has changed things. It's not a big deal by a long shot. I am all too aware thousands of people are dying and my professional colleagues are literally putting their lives on the line.
Frankly, I needed to occupy myself writing today so I would not implode at the knowledge that smirky, snarky, wimpy, unqualified Kushner is making life and death decisions during this crisis. WTF! Stay safe. Stay in.
I called the office of my own Primary MD who my Mom has seen several times over the years for a variety of reasons. He works in a large academic health care system in my community where I was employed for over 20 years. More on THAT another day.The extremely kind person I spoke to did her best to accommodate us. Obviously my 92 year-old Mom wasn't going to be visiting any type of health care facility. Goodness, we've handled her like fragile crystal since the competent leaders of my city and state issued stay- at -home policies several weeks ago. (It's nice to live in an enlightened area). So, I was informed that because my Mom hadn't seen aforementioned Primary in 3 years, she "fell out of" his practice which was now "full". (Isn't that amazing? No need to see an MD all that time she has spent here in the past few years!) Because I am aware that our health care system such as it is, is under great duress at this time, I chose not to beg, yell or try to use any connections to convince this awfully nice woman to get my, my husband's AND my son's Primary to fill a damn prescription my Mom's been on for forty plus damn years.😡
Anyhow...with a weak promise to try and get a doctor to agree to call in the script before her med runs out, my pleasant connection to health care offered to set up a video visit ("there will be the same co-pay" she said). I agreed. We set one up. So next week several days after the med runs out, we'll see how it goes with the doc who has never seen my mother, talking to my mother through the computer screen. Yeah. We'll see how it goes. 😆 And, there'll be more on THAT another day.
Meanwhile...(apologies to Colbert) Meaghan offered to call my Mom's former MD's practice back east to see if another MD in the practice would be willing to prescribe the med and call the pharmacy based upon the knowledge my mother had seen the doctor in the fall and she's been on the SAME DAMN MED for over 40 years. I have to say Meaghan was pretty full of herself when she reported how quickly she had been able to resolve this situation that had frustrated ME so much. Later in the day prior to picking up our take-out dinner, Meaghan and I stopped at the pharmacy to get the medication she had managed to get ordered so easily. Not there. No call. No order. 😑
So, today, Meaghan hit the phones again, talked to someone she deemed to be capable---(she even looked my Mom's record up)---and she assured Meaghan she would get one of the doctors to call in the prescription. THIS time, THIS call worked. The med will be ready for pick-up down the street within hours-who knows-maybe minutes. 😁
This is just one little tale of how COVID 19 has changed things. It's not a big deal by a long shot. I am all too aware thousands of people are dying and my professional colleagues are literally putting their lives on the line.
Frankly, I needed to occupy myself writing today so I would not implode at the knowledge that smirky, snarky, wimpy, unqualified Kushner is making life and death decisions during this crisis. WTF! Stay safe. Stay in.
Thursday, April 2, 2020
Before Isolation ... Celebration
CONGRATULATIONS MICHAEL
We're so proud of your accomplishment and so happy we could celebrate with dear friends-many who helped you along the way. There will be a little delay now before you're onto the next step; but just as you achieved THIS goal we know that the next one is well within your reach.
Sunday, March 22, 2020
Reflections
One of Barry's undertakings during our current isolation is rummaging through a cardboard box that was stored in the far recesses of one of our closets. Yesterday, he showed me a wooden plaque which held an 8 x 11 lined sheet of paper covered with glass. It was definitely my handwriting on that now brown-tinged paper. " What IS this?" I asked aloud. "What IS this?"
Today Barry handed me my nursing school yearbook. It was called Reflections and the year was 1971. And there it was...the intro to the yearbook. My words.
Friday, October 11, 2019
Of Winds and Wishes
Can it be? Can it be that Santa Ana conditions somehow decrease Michael's seizure threshold? I have always thought (based on anecdotal experience-you know- Mom theories) that weather changes, altitude and time zone changes might be seizure triggers in Michael's case. Anyhow...this morning Michael had a seizure in his sleep. Barry wrote the time and length in the seizure journal and he also noted " Santa Ana conditions". I flipped through the notebook to check when the last seizure had occurred and next to the time and length of the seizure a month ago, Barry had noted "Santa Ana winds". Maybe. Maybe not. There are some triggers we can be pretty certain about- stress, for example- and we can take some measures to reduce it. There are other possible triggers that we have noted with respect to Michael but some are simply unavoidable. And that's how it is with epilepsy. That's how it is. For us.
This morning's recovery was swift. Michael slept for a couple of hours post-seizure and came downstairs with an overflowing laundry basket which he proceeded to throw into our frontloading washer piece by piece as he related that he often does so "like pitching a softball" to make this particular chore "more fun". All the while he was grinning from ear to ear. Vintage Michael. So...we're good. Seizure's done, life goes on. Onto reading and studying to get through this final course to get the degree he has so coveted. Is that a stressor? Yes. Hell yes. But we deal...we just deal with it.
So pretty much this is the rhythm of our lives. A seizure. Move on. Do the best we can to minimize triggers we're aware of and brace for the inevitable seizure that will occur again. In a day, in a week, in a month. Oh what I wouldn't give to say in a year! But we're not there. Yet.
Epilepsy awareness month is in November. As I've said before, I'm not certain that increasing awareness results in more research funding, compassion, or better treatment options. Nevertheless, many of us persist in this awareness campaign hoping that it might make a difference. What if one kid in one school stops bullying the kid who has seizures, and instead, sits with him at lunch? What if a handful of people with plenty of discretionary spending resources are moved to donate to research that discovers the cause of SUDEP (Sudden Unexpected Death in Epilepsy) and develops measures to prevent it? What if a young neuroscientist is moved so much by learning about the devastating epilepsies that they commit their career to unraveling the mysteries of syndromes such as Dravet and developing treatments that enable children to thrive and grow into adulthood? What if, indeed!
So...we persist. For the what ifs. For the hope of the future. For Michael and for so many others.
This morning's recovery was swift. Michael slept for a couple of hours post-seizure and came downstairs with an overflowing laundry basket which he proceeded to throw into our frontloading washer piece by piece as he related that he often does so "like pitching a softball" to make this particular chore "more fun". All the while he was grinning from ear to ear. Vintage Michael. So...we're good. Seizure's done, life goes on. Onto reading and studying to get through this final course to get the degree he has so coveted. Is that a stressor? Yes. Hell yes. But we deal...we just deal with it.
So pretty much this is the rhythm of our lives. A seizure. Move on. Do the best we can to minimize triggers we're aware of and brace for the inevitable seizure that will occur again. In a day, in a week, in a month. Oh what I wouldn't give to say in a year! But we're not there. Yet.
Epilepsy awareness month is in November. As I've said before, I'm not certain that increasing awareness results in more research funding, compassion, or better treatment options. Nevertheless, many of us persist in this awareness campaign hoping that it might make a difference. What if one kid in one school stops bullying the kid who has seizures, and instead, sits with him at lunch? What if a handful of people with plenty of discretionary spending resources are moved to donate to research that discovers the cause of SUDEP (Sudden Unexpected Death in Epilepsy) and develops measures to prevent it? What if a young neuroscientist is moved so much by learning about the devastating epilepsies that they commit their career to unraveling the mysteries of syndromes such as Dravet and developing treatments that enable children to thrive and grow into adulthood? What if, indeed!
So...we persist. For the what ifs. For the hope of the future. For Michael and for so many others.
Monday, June 24, 2019
My CBD EXperiment
I've written numerous blogs about our CBD experience treating Michael's seizures. We had grand success for a while and then experienced an epic fail. I don't blame CBD. Perhaps we experienced the "honeymoon period" that often occurs with pharmaceuticals as well. Who knows? (as with most things epilepsy). At any rate, since we have experienced an extended period of time with weeks, even months, between prolonged tonic seizures there will be no cannabis for Michael at this time though we certainly do not rule out using it at some future date.
As for me---well that's a different story. About 8 months ago the occasional arthritic ache and pain turned into a nearly daily occurrence and I was taking Ibuprophen 2, 3, sometimes 4 times a day. I didn't want to continue that pattern. So---I thought, why not try CBD? I think of this as my personal cannabis experiment. And I want to share what I have learned so far.
After searching the internet, reading reviews and generally just trying to determine which suppliers seemed legitimate and trustworthy, I chose my first brand. Each month or so, I switched based on the level of effectiveness and to be perfectly honest, my curiosity. Also, once I had access to the marijuana dispensaries locally, I could peruse their shelves and question staff about the numerous products that were stocked. Please keep in mind this is my personal experience. I am not recommending any one brand nor am I suggesting that because a product didn't deliver for me, it's not a good, even excellent, product. I used tinctures. Doses varied and I generally divided the total daily dose into 2-3 administrations. My measure of success was a dose that controlled any aches or pains and enabled me to avoid using Ibuprophen.
The first three products were purchased on-line. They were priced from $110-$130 per 30 ml. bottle. They were CBD oil tinctures with extremely low levels of THC. They all touted that their hemp was grown in the U.S. First: Elixinol- I required 30 mg/day. The tincture was citrus flavored and delivered via pumps under the tongue. The flavor was tolerable but not great. The second product was MedTerra. It was clear, tasteless and administered via dropper. I needed 33-50 mg/day. Third was Premium Jane (love the name). It was citrus flavored---delicious, administered via a marked dropper, and I needed 50 plus mg/day. Each product lasted approximately a month.
The next product I tried was recommended by Katie's dog groomer. Yep. Anyhow...she swore it helped eliminate her brother's significant shoulder pain. It's quite pricey@ $325 per 30 ml. bottle. BUT it's unique extraction process (their sell) means that one needs only 2 drops to get 25mg of CBD. It's called Whole Flower Fluid. When I recognized I needed at least 4 drops 2-3 times per day to achieve effectiveness, I knew this was not the one for me. I was off to my local dispensary in search of a new product.
I consulted with the "bud specialist" at the dispensary and settled on a 30:1 tincture by Papa & Barkley. The specialist talked about the synergistic effect of adding more THC. That made sense to me as it's mentioned in so much literature about cannabis. This product definitely tastes of the plant. It comes with a marked dropper which is very helpful. I found it effective when taking about 60 mg of CBD/day. Because it does contain more THC than the previous products it is less costly @ $90 per bottle. I used this for at least 3 months, figuring I had found a formula I could stick with. However...
When I visited the local dispensary last Saturday, next to Papa & Barkley on the shelf was a brightly colored box (rainbow) which caught my eye. The product, high CBD full-spectrum tincture by Chemistry, also caught my attention because the strain of the plant, AC/DC, was on the label AND unlike every other product the mg/ml was broken down: 7.6 mg CBD, 4.3mg CBDa, .62mg THC, .52mg CBC, .12mg THCa. No math required. The price was definitely right: $60/30ml. How could I not try? So far, so good @ 1 ml/day. It's administered via marked dropper and tastes plant-like as well, though not as pronounced as Papa & Barkley. I'm anxious to see what happens with this one in the next month. Even if I have to increase the dose somewhat, it seems to be the most cost-effective to achieve the desired results. I'll let you know.
It appears that CBD products with more THC and other cannabinoids work better for me. I have noticed that I am somewhat calmer (it's all relative right ?), sleep better and have much more focus (sometimes laser-like) on most of the oils and in particular, the last two. I haven't used Ibuprophen since I started my experiment. I feel good. Really, really good. Straight from the box of my current tincture: "...help smooth out life's edges and bring a touch of equanimity to the day."
I'm smoothin' out the edges. What about you?
As for me---well that's a different story. About 8 months ago the occasional arthritic ache and pain turned into a nearly daily occurrence and I was taking Ibuprophen 2, 3, sometimes 4 times a day. I didn't want to continue that pattern. So---I thought, why not try CBD? I think of this as my personal cannabis experiment. And I want to share what I have learned so far.
After searching the internet, reading reviews and generally just trying to determine which suppliers seemed legitimate and trustworthy, I chose my first brand. Each month or so, I switched based on the level of effectiveness and to be perfectly honest, my curiosity. Also, once I had access to the marijuana dispensaries locally, I could peruse their shelves and question staff about the numerous products that were stocked. Please keep in mind this is my personal experience. I am not recommending any one brand nor am I suggesting that because a product didn't deliver for me, it's not a good, even excellent, product. I used tinctures. Doses varied and I generally divided the total daily dose into 2-3 administrations. My measure of success was a dose that controlled any aches or pains and enabled me to avoid using Ibuprophen.
The first three products were purchased on-line. They were priced from $110-$130 per 30 ml. bottle. They were CBD oil tinctures with extremely low levels of THC. They all touted that their hemp was grown in the U.S. First: Elixinol- I required 30 mg/day. The tincture was citrus flavored and delivered via pumps under the tongue. The flavor was tolerable but not great. The second product was MedTerra. It was clear, tasteless and administered via dropper. I needed 33-50 mg/day. Third was Premium Jane (love the name). It was citrus flavored---delicious, administered via a marked dropper, and I needed 50 plus mg/day. Each product lasted approximately a month.
The next product I tried was recommended by Katie's dog groomer. Yep. Anyhow...she swore it helped eliminate her brother's significant shoulder pain. It's quite pricey@ $325 per 30 ml. bottle. BUT it's unique extraction process (their sell) means that one needs only 2 drops to get 25mg of CBD. It's called Whole Flower Fluid. When I recognized I needed at least 4 drops 2-3 times per day to achieve effectiveness, I knew this was not the one for me. I was off to my local dispensary in search of a new product.
I consulted with the "bud specialist" at the dispensary and settled on a 30:1 tincture by Papa & Barkley. The specialist talked about the synergistic effect of adding more THC. That made sense to me as it's mentioned in so much literature about cannabis. This product definitely tastes of the plant. It comes with a marked dropper which is very helpful. I found it effective when taking about 60 mg of CBD/day. Because it does contain more THC than the previous products it is less costly @ $90 per bottle. I used this for at least 3 months, figuring I had found a formula I could stick with. However...
When I visited the local dispensary last Saturday, next to Papa & Barkley on the shelf was a brightly colored box (rainbow) which caught my eye. The product, high CBD full-spectrum tincture by Chemistry, also caught my attention because the strain of the plant, AC/DC, was on the label AND unlike every other product the mg/ml was broken down: 7.6 mg CBD, 4.3mg CBDa, .62mg THC, .52mg CBC, .12mg THCa. No math required. The price was definitely right: $60/30ml. How could I not try? So far, so good @ 1 ml/day. It's administered via marked dropper and tastes plant-like as well, though not as pronounced as Papa & Barkley. I'm anxious to see what happens with this one in the next month. Even if I have to increase the dose somewhat, it seems to be the most cost-effective to achieve the desired results. I'll let you know.
It appears that CBD products with more THC and other cannabinoids work better for me. I have noticed that I am somewhat calmer (it's all relative right ?), sleep better and have much more focus (sometimes laser-like) on most of the oils and in particular, the last two. I haven't used Ibuprophen since I started my experiment. I feel good. Really, really good. Straight from the box of my current tincture: "...help smooth out life's edges and bring a touch of equanimity to the day."
I'm smoothin' out the edges. What about you?
Friday, March 8, 2019
Heart in Throat Disease
That's it. That's what I have. My heart is in my throat. That's how I feel. Not all the time. Just the times I'm filled with fear, terror even, that a couple of breakthrough seizures will send us spiraling toward the abyss that is a prolonged, unstoppable seizure. I have it now-the heart in throat thing. Michael's had 4 breakthrough seizures in the last two days. They were brief---seconds only. But two knocked him off his feet.
I know what's causing them. The seizures. He's extremely stressed about a school project due Monday. The stress is causing him to mis-read/understand directions, argue when we attempt to explain or god-forbid assist and prolong the process by hours!
I finally contacted the neuro this afternoon. She knows Michael well. She asked, "Does he LIKE the course?" We chuckled. She knows he's almost there (to his degree) and that suggesting dropping this next-to-last-course is NOT an option. She figures, and I wholeheartedly agree, that he's revved up his stress to such an extent that his seizure threshold is compromised.
So...we have a plan. I'm not enthusiastic about adding a med even for a short time. But I do know how quickly 2, 3, 4 seizures can become a hellacious mess and I DO appreciate how much Michael wants to get his degree.
This evening was quiet seizure-wise but everyone's mad at someone re project or seizure safety. How do we navigate caring and protecting him with supporting his course work? Answer unknown.
I have unbelievable admiration for those people who I know and love who deal with this 24/7. You have no idea. Don't waste your empathetic thoughts on me. Keep them in your thoughts. and, should you want to do a little extra, donate to epilepsy research.
I know what's causing them. The seizures. He's extremely stressed about a school project due Monday. The stress is causing him to mis-read/understand directions, argue when we attempt to explain or god-forbid assist and prolong the process by hours!
I finally contacted the neuro this afternoon. She knows Michael well. She asked, "Does he LIKE the course?" We chuckled. She knows he's almost there (to his degree) and that suggesting dropping this next-to-last-course is NOT an option. She figures, and I wholeheartedly agree, that he's revved up his stress to such an extent that his seizure threshold is compromised.
So...we have a plan. I'm not enthusiastic about adding a med even for a short time. But I do know how quickly 2, 3, 4 seizures can become a hellacious mess and I DO appreciate how much Michael wants to get his degree.
This evening was quiet seizure-wise but everyone's mad at someone re project or seizure safety. How do we navigate caring and protecting him with supporting his course work? Answer unknown.
I have unbelievable admiration for those people who I know and love who deal with this 24/7. You have no idea. Don't waste your empathetic thoughts on me. Keep them in your thoughts. and, should you want to do a little extra, donate to epilepsy research.
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