Once he woke up following an early morning seizure today--- yes today----- the day after I posted about the good effects of CBD! Anyhow--- once he realized what happened he announced " we start another streak beginning today".
Indeed.
We do.
Friday, February 20, 2015
Thursday, February 19, 2015
Michael and CBD Oil-Five Months In
September 9th, 2014- 1st dose of Realm of Caring CA CBD oil. December 9, 2014 first lengthy early morning tonic seizure since starting the oil. Neurologist is confident enough to start a Lamictal wean in late November.
January 14, 2015. Another early morning tonic seizure. Parents note bedtime meds were not taken the night before. Duh! This one has a reason for happening and parents not happy with themselves.
Managed to decrease daily dose of Lamictal by 200 mg. January labs indicated a real jump in Felbatol level. Now working on decreasing Felbatol by 200 mg every two weeks with "check-in" to neuro when down by 600mg.
So..... Happy, very happy with the decreased frequency of the nasty morning seizures. Happy, really happy with the quick recovery when they did occur. Grateful to be part of the RoC community and hopeful that CBD oil may indeed be the answer in our case.
But can I just say this? Drug withdrawal is a BITCH. Enough said. For now.
January 14, 2015. Another early morning tonic seizure. Parents note bedtime meds were not taken the night before. Duh! This one has a reason for happening and parents not happy with themselves.
Managed to decrease daily dose of Lamictal by 200 mg. January labs indicated a real jump in Felbatol level. Now working on decreasing Felbatol by 200 mg every two weeks with "check-in" to neuro when down by 600mg.
So..... Happy, very happy with the decreased frequency of the nasty morning seizures. Happy, really happy with the quick recovery when they did occur. Grateful to be part of the RoC community and hopeful that CBD oil may indeed be the answer in our case.
But can I just say this? Drug withdrawal is a BITCH. Enough said. For now.
Monday, December 8, 2014
A Week in the Life
It's been a pretty busy week around here. One of these past few days---- and I honestly can't remember the exact date--- marked 25 years we have been dealing with the epilepsy beast. 25 years. A quarter of a century. The majority of Michael's life. Last night I was with one of the YOUNG Mom's in our Realm of Caring community and she cried and told me she didn't know how I did it because she was such a disaster for the year her beloved Robbie's seizures were out of control. My response was pretty simple. " You just do it--- you would have...." Yeh, you just do it.
Michael turned 30 yesterday. Aside from a couple small gifts and "Happy Birthdays"all around it was a pretty routine day for him. It's the end of the semester and he's writing a 15 page research paper on how the media can influence societal change regarding marijuana. He 's been doing LOTS of research ---watching WEED and other documentaries, reading many articles, purchasing The Pot Book and really putting it all together in his head. Yesterday he talked to me at length about the Scheduling issue--- he got it. He's read about Charlotte and yesterday he read about Zaki Jackson's journey. "Mom, I couldn't stop tearing up." He gets it. The paper gets turned in Thursday. A very stressful semester will be over and we'll celebrate that and the 30th milestone at a restaurant of Michael's choice. We will celebrate his resilience. We will celebrate over 3 months of the absence of the early morning seizure monster. And we will celebrate our great fortune to have one another. But first--- finish that damn paper.
The annual holiday fundraiser Gingerbread City was held this week. It benefits the local epilepsy foundation. We have been going as a family for about fifteen years. It has grown exponentially in that time as have the cost of tables and tickets. It's a beautiful gala and in past years as a foundation board member I have always worked the room--- profusely thanking celebrity chefs and schmoozing big time donors and bidding on auction items to up the price ( yeh, that always worked out well when no one saw fit to bid after me)! Anyhow--- I resigned from the board recently. We decided we would not purchase a table this year. I released all friends of any obligation to attend ( to support us) which so many did for so many years-- for which I am very grateful . After much vacillation re whether to go at all, Meaghan and I ended up donning our little black dresses and stepping out with the glittery crowd. I felt so liberated! No need to kiss up to anyone--- just enjoy. We had a great time, chatting with people we WANTED to talk with, admiring the structures and staying quite far away from the auction tables.
Friday night Barry and I attended an event that honored Ray Mirzabegian of CA Realm of Caring. The organization holding the event is called the Alliance for Responsible Medicinal Access (ARMA). The price tag was modest ( $100) and it included dinner, live music and a couple of drinks. It was in a building called Tango Del Rey in San Diego----- very interesting venue and attendees. It was an honor to be there for Ray and to be with his wife Arsineh and his family, Cindy Mitchell and the wonderful young Moms--- Allison, Alisha, Olivia. I would have paid a lot more than that to see Ray honored. He has influenced our lives in a way that can only be described as in those commercials --- priceless!
Tomorrow Meaghan and I are having a bridal shower for Katharine who is Meaghan's best friend and the daughter of my best friend Anna. We have a couple of surprises in store. I think it's going to be special--- a celebration of a wedding to come but also a warm embrace of the past 33 years our families have intertwined and friends have widened and joined our circle of love. I'm looking forward to it. It should be a happy day.
Tomorrow is also my Dad's birthday. He's been gone now nearly 20 years. I still miss him desperately. I am glad we will be doing something family- centered and loving on his birthday. He'd like that.
Well--- time got away from me. It's now Monday morning. The shower WAS lovely. There was so much history of family, friendship and love that was present. Katharine was genuinely moved and well--- it was all just so happy. It was a wonderful cap off to a hectic week full of celebration and remembrance. My heart is full.
Michael turned 30 yesterday. Aside from a couple small gifts and "Happy Birthdays"all around it was a pretty routine day for him. It's the end of the semester and he's writing a 15 page research paper on how the media can influence societal change regarding marijuana. He 's been doing LOTS of research ---watching WEED and other documentaries, reading many articles, purchasing The Pot Book and really putting it all together in his head. Yesterday he talked to me at length about the Scheduling issue--- he got it. He's read about Charlotte and yesterday he read about Zaki Jackson's journey. "Mom, I couldn't stop tearing up." He gets it. The paper gets turned in Thursday. A very stressful semester will be over and we'll celebrate that and the 30th milestone at a restaurant of Michael's choice. We will celebrate his resilience. We will celebrate over 3 months of the absence of the early morning seizure monster. And we will celebrate our great fortune to have one another. But first--- finish that damn paper.
The annual holiday fundraiser Gingerbread City was held this week. It benefits the local epilepsy foundation. We have been going as a family for about fifteen years. It has grown exponentially in that time as have the cost of tables and tickets. It's a beautiful gala and in past years as a foundation board member I have always worked the room--- profusely thanking celebrity chefs and schmoozing big time donors and bidding on auction items to up the price ( yeh, that always worked out well when no one saw fit to bid after me)! Anyhow--- I resigned from the board recently. We decided we would not purchase a table this year. I released all friends of any obligation to attend ( to support us) which so many did for so many years-- for which I am very grateful . After much vacillation re whether to go at all, Meaghan and I ended up donning our little black dresses and stepping out with the glittery crowd. I felt so liberated! No need to kiss up to anyone--- just enjoy. We had a great time, chatting with people we WANTED to talk with, admiring the structures and staying quite far away from the auction tables.
Friday night Barry and I attended an event that honored Ray Mirzabegian of CA Realm of Caring. The organization holding the event is called the Alliance for Responsible Medicinal Access (ARMA). The price tag was modest ( $100) and it included dinner, live music and a couple of drinks. It was in a building called Tango Del Rey in San Diego----- very interesting venue and attendees. It was an honor to be there for Ray and to be with his wife Arsineh and his family, Cindy Mitchell and the wonderful young Moms--- Allison, Alisha, Olivia. I would have paid a lot more than that to see Ray honored. He has influenced our lives in a way that can only be described as in those commercials --- priceless!
Tomorrow Meaghan and I are having a bridal shower for Katharine who is Meaghan's best friend and the daughter of my best friend Anna. We have a couple of surprises in store. I think it's going to be special--- a celebration of a wedding to come but also a warm embrace of the past 33 years our families have intertwined and friends have widened and joined our circle of love. I'm looking forward to it. It should be a happy day.
Tomorrow is also my Dad's birthday. He's been gone now nearly 20 years. I still miss him desperately. I am glad we will be doing something family- centered and loving on his birthday. He'd like that.
Well--- time got away from me. It's now Monday morning. The shower WAS lovely. There was so much history of family, friendship and love that was present. Katharine was genuinely moved and well--- it was all just so happy. It was a wonderful cap off to a hectic week full of celebration and remembrance. My heart is full.
Sunday, October 12, 2014
City of Chance
I went to Las Vegas last week with two of my colleagues to teach a seminar about starting a home health agency. If you hate Vegas and want to stop reading now--- don't! This is a good one. Not so much good as extraordinary.
During a break prior to the start of my portion of the session on Thursday morning I was approached by a gentleman who had a question regarding something one of my colleagues had said. He prefaced his question by sharing his motivation for wanting to enter the home health field. He told me he had a disabled daughter who received home care but he knew that it could and SHOULD be better. I don't know why---- I don't often share with strangers--- certainly not in a professional seminar, but I told him I have a son with intractable epilepsy. "So does my daughter" he replied.
In whispered tones in the front of the classroom he related his family's struggles over the previous 13 years. Countless medications, the diagnosis of LGS, the plummet into seizure and pharmaceutical hell. The physicians who recently told him there was nothing more they could do. The recommendation to place his beloved 13 year old daughter in hospice care. The desperation to find something to help. I was at once transfixed and horrified. My mind jumped to Charlotte and Zaki--- also placed in that hopeless, heartbreaking, hellhole of modern medicine's failures.
We whisperered breathlessly then. Me asking if he had considered Charlotte's Web CBD oil. He saying he knew about it. He was willing to move his family to Colorado. ( he shared he lived in Southern California.) He had made contact with RoC Colorado but was unclear what his wait list status was. I told him there was no need to go. Realm of Caring CA was up and running. He was unaware. Last he knew was when the center was shut down. By then I was in the I'm on a mission mode. "I will put you in touch by the end of the day!" Finally he told me that his daughter's Orange County physicians were against CBD even saying that it had done harm in some cases. No need for
me to name the hospital--- anyone in the know...knows. I said simply " you must go elsewhere".
The next hour was a flurry of activity. I did my portion of the presentation of course and then proceeded to text and email Cindy Mitchell and Ray Mirzabegian. I just had to be sure that this desperate father was thrown a life preserver. A life preserver----- a potential life SAVER for his dear daughter. It didn't take long. The preserver was tossed. A chance for healing and ultimately, perhaps saving, offered and accepted. Chris (Dad) is, so to speak, on the way to ROCCA.
Chris said he almost didn't make it to the seminar. He'd never been away from home that long and he vacillated about attending until the last moment. I texted Cindy," he came for a reason----- he just didn't know what it was".
I went to Vegas for a reason. I just didn't know what it was until I was there.
During a break prior to the start of my portion of the session on Thursday morning I was approached by a gentleman who had a question regarding something one of my colleagues had said. He prefaced his question by sharing his motivation for wanting to enter the home health field. He told me he had a disabled daughter who received home care but he knew that it could and SHOULD be better. I don't know why---- I don't often share with strangers--- certainly not in a professional seminar, but I told him I have a son with intractable epilepsy. "So does my daughter" he replied.
In whispered tones in the front of the classroom he related his family's struggles over the previous 13 years. Countless medications, the diagnosis of LGS, the plummet into seizure and pharmaceutical hell. The physicians who recently told him there was nothing more they could do. The recommendation to place his beloved 13 year old daughter in hospice care. The desperation to find something to help. I was at once transfixed and horrified. My mind jumped to Charlotte and Zaki--- also placed in that hopeless, heartbreaking, hellhole of modern medicine's failures.
We whisperered breathlessly then. Me asking if he had considered Charlotte's Web CBD oil. He saying he knew about it. He was willing to move his family to Colorado. ( he shared he lived in Southern California.) He had made contact with RoC Colorado but was unclear what his wait list status was. I told him there was no need to go. Realm of Caring CA was up and running. He was unaware. Last he knew was when the center was shut down. By then I was in the I'm on a mission mode. "I will put you in touch by the end of the day!" Finally he told me that his daughter's Orange County physicians were against CBD even saying that it had done harm in some cases. No need for
me to name the hospital--- anyone in the know...knows. I said simply " you must go elsewhere".
The next hour was a flurry of activity. I did my portion of the presentation of course and then proceeded to text and email Cindy Mitchell and Ray Mirzabegian. I just had to be sure that this desperate father was thrown a life preserver. A life preserver----- a potential life SAVER for his dear daughter. It didn't take long. The preserver was tossed. A chance for healing and ultimately, perhaps saving, offered and accepted. Chris (Dad) is, so to speak, on the way to ROCCA.
Chris said he almost didn't make it to the seminar. He'd never been away from home that long and he vacillated about attending until the last moment. I texted Cindy," he came for a reason----- he just didn't know what it was".
I went to Vegas for a reason. I just didn't know what it was until I was there.
Monday, September 15, 2014
Hey Adrian
It wasn't discipline. It was abuse. You broke his skin. You bruised him. You stuffed leaves in his mouth. You hurt your son. What could he possibly have done to deserve a beating from an NFL football player? Sorry---- that's rhetorical. Nothing. He's 4 years old. 4!!
Your team purports there is a delicate balance they must navigate regarding disciplining children. C'mon Vikings. You just got your butts kicked by the Patriots so you're putting your star back on the field next week!
Hey Adrian. Hey Vikings. I repeat. It wasn't discipline. It was abuse.
Your team purports there is a delicate balance they must navigate regarding disciplining children. C'mon Vikings. You just got your butts kicked by the Patriots so you're putting your star back on the field next week!
Hey Adrian. Hey Vikings. I repeat. It wasn't discipline. It was abuse.
Friday, September 5, 2014
The Quiet
It's so quiet after a seizure. We've all retreated to our corners. Me, in my bed, down the hall, making sure the post ictal period is a restful sleep. Well ---- I can't really " make sure"--- just hope and listen. Meaghan getting ready for work. She'll carry the image most of the day. It'll probably color her interactions, observations. Will she grow impatient with some client's whining? Maybe. Barry's reading the newspaper downstairs. He recorded the seizure in the calendar we keep. The calendar. Me: " how long since the last?". He: "three weeks". Quiet.
I read a comment on Elizabeth Aquino's post on Facebook today. It said "fuck a duck". I was so surprised. I have never heard anyone say that except for me when I am just exasperated beyond --- beyond.
Fuck a duck.
I read a comment on Elizabeth Aquino's post on Facebook today. It said "fuck a duck". I was so surprised. I have never heard anyone say that except for me when I am just exasperated beyond --- beyond.
Fuck a duck.
Friday, August 22, 2014
About Them Buckets
I like the ice bucket challenge. I'm happy that ALS is getting so much exposure. And I'm thrilled they are bringing in so much money! Do I wish that someone had thought of this for epilepsy? Sure I do. But no one did.
I watched the short video of Pete Frates, the young Boston College graduate and baseball player who got this started for ALS when he challenged a couple of friends to do the challenge ( which had been around for sometime with athletes doing it for various charities). Well---- they did it for Pete and ALS and so it went.
I just can't get worked up and cynical about this. So what if celebs are getting their mugs all over social media? So what if some people are "showing off" ? It's fun to watch for the most part and the end outcome is that it IS spreading awareness and raising more money than The ALS Foundation dared to hope for even in their wildest dreams.
ALS is horrific. It's described as a progressive neuro degenerative disease that affects nerve cells in the brain. As I often think about all the neurological disorders such as MS, Alzheimer's---- wouldn't it be wonderful to unlock the mystery of one so that perhaps we could eventually unlock the mystery of all the pathologies of the brain and cure some of these monsters?
Such as ---- epilepsy?
I watched the short video of Pete Frates, the young Boston College graduate and baseball player who got this started for ALS when he challenged a couple of friends to do the challenge ( which had been around for sometime with athletes doing it for various charities). Well---- they did it for Pete and ALS and so it went.
I just can't get worked up and cynical about this. So what if celebs are getting their mugs all over social media? So what if some people are "showing off" ? It's fun to watch for the most part and the end outcome is that it IS spreading awareness and raising more money than The ALS Foundation dared to hope for even in their wildest dreams.
ALS is horrific. It's described as a progressive neuro degenerative disease that affects nerve cells in the brain. As I often think about all the neurological disorders such as MS, Alzheimer's---- wouldn't it be wonderful to unlock the mystery of one so that perhaps we could eventually unlock the mystery of all the pathologies of the brain and cure some of these monsters?
Such as ---- epilepsy?
Subscribe to:
Posts (Atom)