I'm sure there are many new angels in Heaven today, but I personally know of one. Joseph Knight was only 19 months old, but I will always look up to him. In the past several years, I have become quite blase about my epilepsy because I have had enough seizures to know the drill--I have my aura (approximately 4 minutes) and then it spreads to become a grand mal seizure, something I have only experienced some two dozen times in my life, mostly at night in bed, but I know I will come to, recover after about 24 hours, and life will walk on.
Coincidentally, Joseph's death falls on the 33rd anniversary of the first GM seizure I can recall experiencing. I was not quite 12 years old, and I woke up with a sick stomach that gave way to heartburn, vertigo, seeing spots, and light and sound intolerance. Next thing I knew, a loud moan escaped me, and all went black.
I will never forget that fear--how I felt, and then the lost time as I awakened in the hospital. I would learn that it wasn't my first documented seizure, but that there hadn't been many before that, and after nearly 8 years, my parents had been hopeful that I had "outgrown" them. All my others had been blamed on shunt failure, infection, or fever, and I did have a fever with this one, but it was attributed to a surge in hormones, as I was in the thick of puberty, and I went back onto phenobarbital for the next 3 years.
Then I would spend time--about three years--off all medication, with only clusters of what we later learned were minor seizures at season change. They would often last for days, I'd have as many as 40 a day, and they made me horribly sick, but I always knew I'd recover, and I did. They weren't even much to see--some paling of my skin, movement of my eyes and an occasional twitch or shake of a hand or arm, for about two or three minutes. Then they would stop, until the next one, but when the offending weather front blew through, eventually my brain would stop whining and do its real job.
I was 25 before we realized these were seizures themselves, and that they might be able to be controlled with medication. Then we tried several meds before I finally gave up and decided I could live with them better than I could cope with side effects and reactions from multiple medications, but I thought I still lived well, so I continued on.
In the meantime, I made my way through high school, college, and a medication reaction after a breakthrough GM seizure that would change my life and teach me all about the importance of self-advocacy (mentioned in a previous post), but once I emotionally recovered from that experience and saw so much from others I found online who had been through so much worse, I became very grateful for what I had. After all, I had experienced enough seizures to know not to be terrified of them, and I could still live a full life. I learned to drive, got licensed, got married, had children, and walked on.
Then came Lacy's struggle with fertility and finally, Jimmie's birth. Life was happy, in spite of her mom's death soon after her wedding...until Jimmie's Infantile Spasms diagnosis at four months old, soon after she had called me about some peculiar and frightening movements he had been making. During the next nearly four years, I would watch his struggle, mostly from afar, and silently count my blessings while worrying for him and for Lacy and David. Finally, his seizures came under control, and my son's autism had become manageable, so again, life was good, but then I began to realize just how many people I knew who struggled every day with seizures and what epilepsy had done to their (and their child's) life. Sure, I was okay, and I would be.
Then Gina died--suddenly. I examined my attitude again. We had reason to believe asthma had taken her, since she'd been found holding her nebulizer, but her post-mortem exam revealed that she had died from "a simultaneous multi-system shutdown." Had she really had a seizure and just thought it was an asthma attack? Nearly four years later, we still don't know, and we probably never will.
There have been many posts on my forums about SUDEP: Sudden Death from Epilepsy. I always thought it was rare, but now I wonder if it really is. I have read that it generally happens in cases of poorly- or uncontrolled GM epilepsy, but...is it always uncontrolled in such cases? How much risk do we all have?
For now, I am cautiously content to keep doing what I do, because my life is busy, and I can't sit and wait for the other shoe to drop, whether it be a seizure, worsening of my epilepsy, shunt failure, or anything else, but I was reminded today to count my blessings and always be aware that my life can change in the blink of an eye, and I owe that lesson to a little angel named Joseph Knight. God bless you, Little Buddy. Thanks for sharing your sweet, short life with me and teaching me what's really important in life. Love, Liz
Sunday, August 7, 2011
Thursday, June 23, 2011
Five years ago today...
Five years ago today, my best friend had her first child, a beautiful baby boy. He was named James William, for both his grandfathers, and I knew he would touch my life, but it makes me breathless to think back on just how much he has.
To all appearances, "Jimmie" seemed quite healthy. He was basically full-term, a decent size and weight, and he seemed to be thriving. Then one night, I got a call from Lacy that stopped my heart. Jimmie was having some strange episodes, and as she described them, I grew sick. I was so afraid to tell her what I thought, but she had called me for advice and wanted to know: were they seizures?
I advised her to call the pediatrician the next morning and demand that 4 1/2 month old Jimmie be seen right away. She called later to tell me that she had an appointment scheduled with a pediatric neurologist who would confirm my greatest fear. Jimmie had Infantile Spasms, a serious form of childhood epilepsy that often results in brain damage.
Many treatments would follow, and for a time, they seemed to be successful at first, but then he would relapse, and his seizures began to change. They went from the "wiping his eyes" type movement I saw (several times a day) when I visited a few months later, to more obvious seizure-type movements and behaviors. Several combinations of medications were attempted, including ACTH, a steroid often used to treat them that has had some success, but at about 20 months old, Jimmie's diagnosis would advance to Lennox-Gastaut Syndrome, which meant his epilepsy had become intractable and was not responding well to medications.
Finally, late last fall, he was found to have had a growth spurt and was given a dose increase of one of his medications. Since then, he has had no known seizures. That's the good news. The bad is that all the seizure activity has resulted in significant cognitive damage. He is slowly starting to advance in development again, although his 2 1/2 year-old brother, Charlie, is way ahead of him.
I was actually the one to introduce Lacy to epilepsy in the scariest way possible, when she witnessed one of my grand mal/tonic clonic seizures early in my pregnancy with my son, but in comparison, my epilepsy, also from infancy, has been amazingly uncomplicated and easy to control. It has even made me complacent, I'm sorry to say, and even when I had two seizures in the past 2 1/2 years, I was able to blame them on stupid acts on my part and walk on. Sure, I have known, at least on a casual level, that most people's epilepsy is more complicated than mine, but knowing Jimmie and his struggle has been very humbling. He has taught me all about courage and living for the moment, and I am so proud to say I look up to him as an example of how to live.
Happy, happy fifth birthday, sweet Jimmie!!!! I can't wait to see you, Charlie, and Mommy and Daddy!! xxxxoooo<3<3<3<3 LIZ
To all appearances, "Jimmie" seemed quite healthy. He was basically full-term, a decent size and weight, and he seemed to be thriving. Then one night, I got a call from Lacy that stopped my heart. Jimmie was having some strange episodes, and as she described them, I grew sick. I was so afraid to tell her what I thought, but she had called me for advice and wanted to know: were they seizures?
I advised her to call the pediatrician the next morning and demand that 4 1/2 month old Jimmie be seen right away. She called later to tell me that she had an appointment scheduled with a pediatric neurologist who would confirm my greatest fear. Jimmie had Infantile Spasms, a serious form of childhood epilepsy that often results in brain damage.
Many treatments would follow, and for a time, they seemed to be successful at first, but then he would relapse, and his seizures began to change. They went from the "wiping his eyes" type movement I saw (several times a day) when I visited a few months later, to more obvious seizure-type movements and behaviors. Several combinations of medications were attempted, including ACTH, a steroid often used to treat them that has had some success, but at about 20 months old, Jimmie's diagnosis would advance to Lennox-Gastaut Syndrome, which meant his epilepsy had become intractable and was not responding well to medications.
Finally, late last fall, he was found to have had a growth spurt and was given a dose increase of one of his medications. Since then, he has had no known seizures. That's the good news. The bad is that all the seizure activity has resulted in significant cognitive damage. He is slowly starting to advance in development again, although his 2 1/2 year-old brother, Charlie, is way ahead of him.
I was actually the one to introduce Lacy to epilepsy in the scariest way possible, when she witnessed one of my grand mal/tonic clonic seizures early in my pregnancy with my son, but in comparison, my epilepsy, also from infancy, has been amazingly uncomplicated and easy to control. It has even made me complacent, I'm sorry to say, and even when I had two seizures in the past 2 1/2 years, I was able to blame them on stupid acts on my part and walk on. Sure, I have known, at least on a casual level, that most people's epilepsy is more complicated than mine, but knowing Jimmie and his struggle has been very humbling. He has taught me all about courage and living for the moment, and I am so proud to say I look up to him as an example of how to live.
Happy, happy fifth birthday, sweet Jimmie!!!! I can't wait to see you, Charlie, and Mommy and Daddy!! xxxxoooo<3<3<3<3 LIZ
Tuesday, April 5, 2011
In Honor of Autism Awareness Month: Drew's story
It's hard to believe now that there was ever a time when autism wasn't a part of my life. It's been over 14 years since I learned of my son's diagnosis, and this after two years of begging, pleading, and arguing with doctors that I knew something wasn't right when he was a tiny infant.
I was also scared because he had been born with a normal-sized, normal-shaped head, but after about age four months, it began to grow very quickly, enough that I noticed a difference in its appearance in a matter of weeks. Even more alarming, it was starting to look like mine did in my baby pictures--wide, bulging forehead; bulging occipital (back) end. Even so, no concern was ever expressed by his pediatrician, and his head was never even measured, in spite of the fact that his doctor knew about my neurological history. I knew "hydro" was not generally genetic, and I am the only one (how lucky, huh??) who has it in my family, but...what if...??
As time went on, he began to "grow into his head," and it was less obvious that it had been large at an earlier point in his life, but...his behaviors continued to baffle me. He appeared to be deaf, not acknowledging my voice, especially when I told him to stop taking the frozen chicken fingers out of the cart while shopping, or even when he was proceeding to run into the street. He became a nightmare to take anywhere, constantly throwing tantrums or refusing to walk, and I was always trying to ignore the stares, glares, and (often loud) comments about my crappy parenting skills. Through all of this, I was still "assured" (read put off) by his doctor that "he's just a boy," "boys develop differently," "you can't compare him to your precocious daughter..." etc., etc. It simply didn't matter that I lived with this child--not any of them--and that, as the eldest of five, a veteran babysitter, and mother of another child, I had a good idea of what was "normal" and what was not, and I knew that something was "off" with my son, though no one else seemed to notice.
A breakthrough in my frustration would come at the grocery store one day when Drew was about 18 months old, and, as usual, getting into the food and driving me to tears of despair. In a sea of shaking fingers and heads, comments (and loud accusations) of "Why won't you get control of that kid?" a savior came forward. She was a middle-aged woman who was, she said, a retired special education teacher. She engaged Drew, talked to him, tried to get him to smile, and then said that she "didn't want to pry," but had I considered getting him evaluated for autism?
At that point, I had a much better idea of what was wrong as I went on to read--voraciously!!--about autism and its classic behaviors. It would be another year before I would succeed in getting a diagnosis for him, and we would endure several more months before truly useful services would start, but I would learn that he was, indeed, a smart little boy who caught on quickly and thrived in the therapies he was given, in spite of another diagnosis he was given at 5 1/2: Chiari Malformation, which is the protrusion of the cerebellar tonsils in the lower back of the brain. Chiari can also aggravate the issues he has with autism, such as sensory integration dysfunction, expressive language difficulty, and processing issues.
Today, I went to a meeting at his school to discuss getting his Office of Rehabilitation Services (ORS) paperwork started so that he may some day be employed. I still don't know what he'll do, and it may be a long time before we know how well he'll manage, but I still have hope that he will attain some degree of self-support. He amazes me every day and changes, grows, and matures constantly. While I think life will always be a struggle for him, I also believe he can make his way. Autism doesn't have to mean despair and fear. There is hope. I know. :)
I was also scared because he had been born with a normal-sized, normal-shaped head, but after about age four months, it began to grow very quickly, enough that I noticed a difference in its appearance in a matter of weeks. Even more alarming, it was starting to look like mine did in my baby pictures--wide, bulging forehead; bulging occipital (back) end. Even so, no concern was ever expressed by his pediatrician, and his head was never even measured, in spite of the fact that his doctor knew about my neurological history. I knew "hydro" was not generally genetic, and I am the only one (how lucky, huh??) who has it in my family, but...what if...??
As time went on, he began to "grow into his head," and it was less obvious that it had been large at an earlier point in his life, but...his behaviors continued to baffle me. He appeared to be deaf, not acknowledging my voice, especially when I told him to stop taking the frozen chicken fingers out of the cart while shopping, or even when he was proceeding to run into the street. He became a nightmare to take anywhere, constantly throwing tantrums or refusing to walk, and I was always trying to ignore the stares, glares, and (often loud) comments about my crappy parenting skills. Through all of this, I was still "assured" (read put off) by his doctor that "he's just a boy," "boys develop differently," "you can't compare him to your precocious daughter..." etc., etc. It simply didn't matter that I lived with this child--not any of them--and that, as the eldest of five, a veteran babysitter, and mother of another child, I had a good idea of what was "normal" and what was not, and I knew that something was "off" with my son, though no one else seemed to notice.
A breakthrough in my frustration would come at the grocery store one day when Drew was about 18 months old, and, as usual, getting into the food and driving me to tears of despair. In a sea of shaking fingers and heads, comments (and loud accusations) of "Why won't you get control of that kid?" a savior came forward. She was a middle-aged woman who was, she said, a retired special education teacher. She engaged Drew, talked to him, tried to get him to smile, and then said that she "didn't want to pry," but had I considered getting him evaluated for autism?
At that point, I had a much better idea of what was wrong as I went on to read--voraciously!!--about autism and its classic behaviors. It would be another year before I would succeed in getting a diagnosis for him, and we would endure several more months before truly useful services would start, but I would learn that he was, indeed, a smart little boy who caught on quickly and thrived in the therapies he was given, in spite of another diagnosis he was given at 5 1/2: Chiari Malformation, which is the protrusion of the cerebellar tonsils in the lower back of the brain. Chiari can also aggravate the issues he has with autism, such as sensory integration dysfunction, expressive language difficulty, and processing issues.
Today, I went to a meeting at his school to discuss getting his Office of Rehabilitation Services (ORS) paperwork started so that he may some day be employed. I still don't know what he'll do, and it may be a long time before we know how well he'll manage, but I still have hope that he will attain some degree of self-support. He amazes me every day and changes, grows, and matures constantly. While I think life will always be a struggle for him, I also believe he can make his way. Autism doesn't have to mean despair and fear. There is hope. I know. :)
Friday, March 25, 2011
Purple Day, and My Best Friend's Birthday
Lacy has been my best friend...forever. It's actually been just over 20 years, but honestly, I can't remember much about my life before I knew her. We have been through so much together.
We met in college, when I was recovering emotionally from the scariest medical mess of my life. I'd had a reaction to an epilepsy medication for over 2 1/2 years until I finally figured it out for myself and insisted on being taken off of it. She was there every step, although she essentially had to take my word for it all, since it had occurred before we met, and I hope I have done even ten percent for her what she's done for me.
I gave Lacy a crash course in epilepsy and seizure management when she lived with me a few years after graduation. My daughter was a toddler then, and I had just learned I was pregnant again. I had just returned home from the store as she walked in from work, and we were talking as she helped me put everything away.
Suddenly, I felt my familiar aura roll through me, and I suddenly realized this one was for real. I was about to have a seizure on the hard kitchen floor. She sprang into action, trying to close the dishwasher and keep my daughter away from me so she wouldn't get hurt. Since I was pregnant, too, I needed immediate medical attention.
How she survived all of that and didn't run away screaming, I'll never know. She did move out soon afterward, but only because she'd finally saved enough to get her own place.
We lived together for a total of about a year and a half before we had to move way up north, and she found other roommates. We stayed in close touch, and she eventually moved to the midwest and married. I sang a solo at her wedding, and it scared the hell out of me, but I was so glad I could help make her day special.
Lacy had always planned to have children, and since she was 35 when she and David married, she had to start trying to conceive soon. It would be difficult, and she ultimately required medical intervention, but she finally had a breathtakingly beautiful baby boy on June 23, 2006.
Just a few months after Jimmie was born, she called me late at night and told me she was scared that he might be having seizures. She and I had also co-founded a support organization in college, so she had learned a lot about epilepsy, including the fact that there were many different types of seizures. I advised her to call her pediatrician immediately the next morning and insist that Jimmie be seen right away. I couldn't make myself say that they sounded like infantile spasms, which I knew could indicate a very serious type of childhood epilepsy, but she would find out quickly for herself.
Jimmie would undergo several combinations of medications to achieve control, including B6 and ACTH, which is normally used to treat IS, but the control was short-lived, and his IS developed into the dreaded Lennox-Gastaut Syndrome. LGS is an intractable form of epilepsy that results in neurological damage. Although finally controlled for the past 4 1/2 months, Jimmie has severe developmental delay and is much like a one-year-old. He also now has a two-year-old brother, Charlie, who is learning to be a help to his mommy.
Lacy's birthday is tomorrow. Tomorrow is also Purple Day around the world, to raise awareness for epilepsy. Neither she nor I could ever have dreamed that she would need to have in-depth knowledge of epilepsy after she moved out of my house, and I feel like I can do so little, especially being so far away, but I do try to encourage her and cheer her and Jimmie on as he makes every accomplishment, how ever small it may be...and I plan to honor him and others all over the world tomorrow, March 26, by wearing purple...for her birthday, World Epilepsy Awareness Day. Please join me!!
We met in college, when I was recovering emotionally from the scariest medical mess of my life. I'd had a reaction to an epilepsy medication for over 2 1/2 years until I finally figured it out for myself and insisted on being taken off of it. She was there every step, although she essentially had to take my word for it all, since it had occurred before we met, and I hope I have done even ten percent for her what she's done for me.
I gave Lacy a crash course in epilepsy and seizure management when she lived with me a few years after graduation. My daughter was a toddler then, and I had just learned I was pregnant again. I had just returned home from the store as she walked in from work, and we were talking as she helped me put everything away.
Suddenly, I felt my familiar aura roll through me, and I suddenly realized this one was for real. I was about to have a seizure on the hard kitchen floor. She sprang into action, trying to close the dishwasher and keep my daughter away from me so she wouldn't get hurt. Since I was pregnant, too, I needed immediate medical attention.
How she survived all of that and didn't run away screaming, I'll never know. She did move out soon afterward, but only because she'd finally saved enough to get her own place.
We lived together for a total of about a year and a half before we had to move way up north, and she found other roommates. We stayed in close touch, and she eventually moved to the midwest and married. I sang a solo at her wedding, and it scared the hell out of me, but I was so glad I could help make her day special.
Lacy had always planned to have children, and since she was 35 when she and David married, she had to start trying to conceive soon. It would be difficult, and she ultimately required medical intervention, but she finally had a breathtakingly beautiful baby boy on June 23, 2006.
Just a few months after Jimmie was born, she called me late at night and told me she was scared that he might be having seizures. She and I had also co-founded a support organization in college, so she had learned a lot about epilepsy, including the fact that there were many different types of seizures. I advised her to call her pediatrician immediately the next morning and insist that Jimmie be seen right away. I couldn't make myself say that they sounded like infantile spasms, which I knew could indicate a very serious type of childhood epilepsy, but she would find out quickly for herself.
Jimmie would undergo several combinations of medications to achieve control, including B6 and ACTH, which is normally used to treat IS, but the control was short-lived, and his IS developed into the dreaded Lennox-Gastaut Syndrome. LGS is an intractable form of epilepsy that results in neurological damage. Although finally controlled for the past 4 1/2 months, Jimmie has severe developmental delay and is much like a one-year-old. He also now has a two-year-old brother, Charlie, who is learning to be a help to his mommy.
Lacy's birthday is tomorrow. Tomorrow is also Purple Day around the world, to raise awareness for epilepsy. Neither she nor I could ever have dreamed that she would need to have in-depth knowledge of epilepsy after she moved out of my house, and I feel like I can do so little, especially being so far away, but I do try to encourage her and cheer her and Jimmie on as he makes every accomplishment, how ever small it may be...and I plan to honor him and others all over the world tomorrow, March 26, by wearing purple...for her birthday, World Epilepsy Awareness Day. Please join me!!
Saturday, February 12, 2011
So, it's been awhile...
I simply don't have enough creativity or energy to blog every day, but even I'm surprised that it's been a week and a half since I last posted.
There's a lot going on in my life that I have to learn about to help myself and my son live our best lives, and there seems to be no shortage of new avenues to study and explore. I'm not one of those militant moms who lives for a "cure" for autism, simply because I don't believe there is one and seriously doubt I'll see one in my lifetime, but new ideas and theories abound all the time, and although I find it all exhausting and pushed a lot of it away for a long time, I am starting to see the merit in some of it and even some great importance in why I must learn about certain aspects of what is being hailed by some as keys to "recovery."
Autism "recovery." The debate of the century rages on. Some are insistent and believe whole-heartedly in it, while others (mainly autistic adults themselves) are adamantly opposed to it and see it as sheer quackery. I'm somewhere in the middle, and only because I have recently discovered that I have some of the health issues that these proponents of "biomedical interventions" are so insistent can "cure" autism. I am not trying to "cure" or "recover" my son, but after the past four years of struggling against my own body, I now know that I have Candida overgrowth. This systemic yeast invades the intestine and flattens the flora, which are the structures that absorb the nutrients from the foods we eat. I now know that my flora are badly damaged from years of antibiotics used to treat acne and other maladies that subsequently made me resistant and, therefore, made my son resistant to antibiotics as well, largely because I was horribly sick with bronchial pneumonia through about 2/3 of my pregnancy and thus given copious amounts of antibiotics to cure me.
Of course, not a word was said about taking probiotics to preserve my digestive health...and it all came down on me years later in the form of several autoimmune problems. Due to all of that, and especially being sick during my pregnancy, it also left my son with a weakened ability to fight infection. A long string of ear infections resulted. I now also have an intolerance to a long list of foods...and I fear the same for my son. I already know he's gluten intolerant, as are my father and both my brothers, and he is about 95% gluten-free now. Symptoms he had like chest discomfort, reflux, and abdominal weight are gone now, and other things, such as constipation, will probably eventually resolve. I just hope to God he doesn't have Candida, as I do, and I am starting him on a precautionary probiotic to guard against it.
All of these are biomedical treatments that are touted to "recover" kids and adults from autism, but if he improves--particularly with his language ability--that will only be a bonus. I'm doing this because if he feels even ten percent as miserable as I did before starting this, it has to be done for the sake of his physical health. Gluten intolerance and Celiac Disease left untreated can lead to diabetes and cancer, as well as other serious health problems, so I know we have to be gluten-free. That's my only reason for doing this with him, but if some improvement in his ability to live his life independently comes of it, that's all good, too.
There's a lot going on in my life that I have to learn about to help myself and my son live our best lives, and there seems to be no shortage of new avenues to study and explore. I'm not one of those militant moms who lives for a "cure" for autism, simply because I don't believe there is one and seriously doubt I'll see one in my lifetime, but new ideas and theories abound all the time, and although I find it all exhausting and pushed a lot of it away for a long time, I am starting to see the merit in some of it and even some great importance in why I must learn about certain aspects of what is being hailed by some as keys to "recovery."
Autism "recovery." The debate of the century rages on. Some are insistent and believe whole-heartedly in it, while others (mainly autistic adults themselves) are adamantly opposed to it and see it as sheer quackery. I'm somewhere in the middle, and only because I have recently discovered that I have some of the health issues that these proponents of "biomedical interventions" are so insistent can "cure" autism. I am not trying to "cure" or "recover" my son, but after the past four years of struggling against my own body, I now know that I have Candida overgrowth. This systemic yeast invades the intestine and flattens the flora, which are the structures that absorb the nutrients from the foods we eat. I now know that my flora are badly damaged from years of antibiotics used to treat acne and other maladies that subsequently made me resistant and, therefore, made my son resistant to antibiotics as well, largely because I was horribly sick with bronchial pneumonia through about 2/3 of my pregnancy and thus given copious amounts of antibiotics to cure me.
Of course, not a word was said about taking probiotics to preserve my digestive health...and it all came down on me years later in the form of several autoimmune problems. Due to all of that, and especially being sick during my pregnancy, it also left my son with a weakened ability to fight infection. A long string of ear infections resulted. I now also have an intolerance to a long list of foods...and I fear the same for my son. I already know he's gluten intolerant, as are my father and both my brothers, and he is about 95% gluten-free now. Symptoms he had like chest discomfort, reflux, and abdominal weight are gone now, and other things, such as constipation, will probably eventually resolve. I just hope to God he doesn't have Candida, as I do, and I am starting him on a precautionary probiotic to guard against it.
All of these are biomedical treatments that are touted to "recover" kids and adults from autism, but if he improves--particularly with his language ability--that will only be a bonus. I'm doing this because if he feels even ten percent as miserable as I did before starting this, it has to be done for the sake of his physical health. Gluten intolerance and Celiac Disease left untreated can lead to diabetes and cancer, as well as other serious health problems, so I know we have to be gluten-free. That's my only reason for doing this with him, but if some improvement in his ability to live his life independently comes of it, that's all good, too.
Sunday, January 30, 2011
The whole thing about being/thinking of myself as an "-ic"...
When I hear people use words like "hydrocephalic" or "epileptic" as a noun, it makes my skin crawl. This is a means of labeling that, to me, is incredibly self-limiting. Maybe I feel that way because I haven't had serious problems with either condition, but it just seems that it means that's all we are. I am a wife, mother, daughter, sister, friend, and "amateur" advocate. In terms of its overall impact on my life, it actually ranks fairly low. I do have ongoing effects that most others do--memory, concentration, and other common deficits--but I have so much to keep me busy that thinking of myself as defined by my conditions drags me down and leaves me with no energy to deal with everything I have to, so there's no time for it, plain and simple. How much better would we all feel if we looked at it that way?
I have noticed that I say my son is "autistic," and of course, that sounds hypocritical, but I was very uncomfortable with it for a long time and actually refused to say it until I was actually corrected by some adults at an autism conference. They explained that there is no way to separate who they are from their autism, and therefore, it is completely okay, and even preferable to them, to be referred to as autistic. I would eventually come to see that in the way they talked and thought. There actually is an "autistic" way of thinking. It's very literal and "black and white," unlike my thinking is with hydro and epilepsy, which is much broader and more "neurotypical."
UGH...there's another word I grapple with: "neurotypical." To some, it means "normal." To others, it means "not ______ (whatever they're talking about)," but it has mostly come to mean, in my online roamings, "not autistic."
Okay, so I'm not autistic, but "neurotypical"?? Surely, you jest!! I think not! Hydro comes with its own idiosyncratic way of thinking, to some degree, but not in as limited a way as autism. This is especially true with Nonverbal Learning Disorder, which is a very common effect of hydro, and of which I have some slight shades. The difference is that I know that not everyone thinks the way I do, and yeah, I know it's weird. Most autistic adults have told me that they don't have that ability.
So, if we have more prominent NLD, are we more able to see ourselves as "hydrocephalics"? I'm interested in any and all input. :)
I have noticed that I say my son is "autistic," and of course, that sounds hypocritical, but I was very uncomfortable with it for a long time and actually refused to say it until I was actually corrected by some adults at an autism conference. They explained that there is no way to separate who they are from their autism, and therefore, it is completely okay, and even preferable to them, to be referred to as autistic. I would eventually come to see that in the way they talked and thought. There actually is an "autistic" way of thinking. It's very literal and "black and white," unlike my thinking is with hydro and epilepsy, which is much broader and more "neurotypical."
UGH...there's another word I grapple with: "neurotypical." To some, it means "normal." To others, it means "not ______ (whatever they're talking about)," but it has mostly come to mean, in my online roamings, "not autistic."
Okay, so I'm not autistic, but "neurotypical"?? Surely, you jest!! I think not! Hydro comes with its own idiosyncratic way of thinking, to some degree, but not in as limited a way as autism. This is especially true with Nonverbal Learning Disorder, which is a very common effect of hydro, and of which I have some slight shades. The difference is that I know that not everyone thinks the way I do, and yeah, I know it's weird. Most autistic adults have told me that they don't have that ability.
So, if we have more prominent NLD, are we more able to see ourselves as "hydrocephalics"? I'm interested in any and all input. :)
Saturday, January 29, 2011
So...now some about me
As I said, I had toyed with the idea of blogging for awhile, but what about? Generally, a blog is a "slice of life," but what about my life would interest anyone? Yeah, I have a weird medical condition that few people know about, but I know thousands of others who do, too, and so many of them have been through a lot worse than I have. I didn't want to write a "brag," so...where to go with it?
I decided to go with what I have done in the online forums I have participated in for the past nearly 20 years. I have used my experience to encourage others who are new to dealing with hydro, and it seems to be working. It's always rewarding to hear someone say that I made them feel optimistic that their child would do well, or that life can get better. After all, I had a rough start myself--five surgeries before kindergarten, a shunt infection, and some seizures that would later be diagnosed as epilepsy.
I know that this is not unique, either, and I am very fortunate to be doing well with both conditions. I actually have "some of this, and some of that," which, in a lot of ways, has been just as stressful. I would get my brain around one issue and then be hit with another one. They have come in a steady stream in my adulthood, too. After a harrowing battle with a severe reaction to an epilepsy medication in college, I learned that not all doctors work for the good of their patients. Some put ego ahead of it, and after several negative experiences with neurologists, I decided that my neurosurgeon, who had initially put me on epilepsy medication, could handle that, too. I haven't looked back since.
That experience would give me tools for what was ahead. I would (somehow) go on to graduate from college, marry, and have two great kids, but my naivete about being able to put my limited energy into dealing with my own medical matters would be shattered with my son's autism diagnosis in January of 1997. Again, it's just enough to make me work my tail off to help him help himself, and we are succeeding, but there was more to come.
I had always been concerned about his rapid head growth as an infant and had watched him closely for any signs of hydro, although I knew it generally wasn't genetic. We finally decided to get an MRI of his head and neck, and I would learn all about something I was only vaguely familiar with then: Chiari Malformation. He had a 13 millimeter herniation, which is significant. I thought surgery was always necessary for this, the herniation of the brain's cerebellar tonsils, but when I rushed him to my neurosurgeon, I learned that there was no compression of the brainstem, and we would just have to monitor it over time. He might never need surgery, I was assured, and so far, after 10 years, that has been the case.
God wasn't done with me yet. When my daughter was eleven, she began to have what we thought were asthma attacks. They were exhausting and necessitated a nap afterward. Further exploration would uncover an arrhythmia, which was treated with a beta blocker and later found to require a cardiac ablation, which would stop the "short circuiting" of the blood flow and lead to normal circulation (and oxygenation) of the blood, stopping the palpitations and other symptoms.
Now my family was doing well, so why not something else to deal with? Just after my 40th birthday, I began to notice a rapid onset of many symptoms that would lead to a diagnosis of hypothyroid. That got under control, and then my vitamin D was found to be nearly zero, which accounted for the severe exhaustion, joint stiffness and fibromyalgia-like muscle pain I was having that was so bad, I could hardly get out of bed. After this had improved with aggressive D therapy, I was found to have Celiac Disease.
That was the biggest shock. After all, I did not fit the "profile" at all. I was (and still am) very heavy and not experiencing the classic diarrhea, nausea, and vomiting I'd heard about. How could I have Celiac??
I began learning about gluten-free eating and discovered that my blood sugar, which had been low my whole life and getting much worse in the previous year or so, became normal for the first time in my life once I learned to stop eating gluten!! The remaining joint pain and fatigue started to let up, and for three months, I felt like a new person.
Then I began to have more symptoms. My sleep became disturbed, I constantly--and I mean constantly--craved sugar. I itched uncontrollably and began to develop athlete's foot and thrush. Then I knew...I had the dreaded Candida. This is the rampant yeast overgrowth from years and years of antibiotic or birth control pill use. I am under treatment and feel considerably better now, but I can't do this horrifically difficult diet, so I have increased my probiotics to twice a day and have a quart of plain fat-free yogurt every day, which is helping. However, I still have to take med for sleep, and there is a LOT of weight to get rid of, in spite of the fact that I don't eat a lot.
So, I mentioned that every one in the house has had a medical odyssey and still hadn't talked about my husband. He was born with a visual defect, coloboma, which compromised--basically made nonexistent--his depth perception and left him with a very high risk of detached retina. We didn't know until just over two years ago just how much a risk he had, but when he suddenly started having issues with the little vision he had in his affected eye, he went immediately to the eye doctor and was found to have not only detached retina, but a cataract as well. Four surgeries and months of frustration with Drew's behavior would follow because Daddy couldn't take him anywhere, but he is now about 99% recovered, and we thank God. He also has sleep apnea, which is treated with a CPAP (after months of threats from me to divorce him because his incessant foghorn-like snoring kept me from getting more than 2-3 hours of sleep a night).
People have said (chirped, actually), "God never gives you more than you can handle," and I have vowed to punch the next one who says it to me, but I do believe that everything happens for a reason, and that what doesn't kill you makes you stronger. I have found that to be true in my life and can say that I'm actually glad for my experiences because I know that they have made me who I am, and that ain't so bad. :)
I decided to go with what I have done in the online forums I have participated in for the past nearly 20 years. I have used my experience to encourage others who are new to dealing with hydro, and it seems to be working. It's always rewarding to hear someone say that I made them feel optimistic that their child would do well, or that life can get better. After all, I had a rough start myself--five surgeries before kindergarten, a shunt infection, and some seizures that would later be diagnosed as epilepsy.
I know that this is not unique, either, and I am very fortunate to be doing well with both conditions. I actually have "some of this, and some of that," which, in a lot of ways, has been just as stressful. I would get my brain around one issue and then be hit with another one. They have come in a steady stream in my adulthood, too. After a harrowing battle with a severe reaction to an epilepsy medication in college, I learned that not all doctors work for the good of their patients. Some put ego ahead of it, and after several negative experiences with neurologists, I decided that my neurosurgeon, who had initially put me on epilepsy medication, could handle that, too. I haven't looked back since.
That experience would give me tools for what was ahead. I would (somehow) go on to graduate from college, marry, and have two great kids, but my naivete about being able to put my limited energy into dealing with my own medical matters would be shattered with my son's autism diagnosis in January of 1997. Again, it's just enough to make me work my tail off to help him help himself, and we are succeeding, but there was more to come.
I had always been concerned about his rapid head growth as an infant and had watched him closely for any signs of hydro, although I knew it generally wasn't genetic. We finally decided to get an MRI of his head and neck, and I would learn all about something I was only vaguely familiar with then: Chiari Malformation. He had a 13 millimeter herniation, which is significant. I thought surgery was always necessary for this, the herniation of the brain's cerebellar tonsils, but when I rushed him to my neurosurgeon, I learned that there was no compression of the brainstem, and we would just have to monitor it over time. He might never need surgery, I was assured, and so far, after 10 years, that has been the case.
God wasn't done with me yet. When my daughter was eleven, she began to have what we thought were asthma attacks. They were exhausting and necessitated a nap afterward. Further exploration would uncover an arrhythmia, which was treated with a beta blocker and later found to require a cardiac ablation, which would stop the "short circuiting" of the blood flow and lead to normal circulation (and oxygenation) of the blood, stopping the palpitations and other symptoms.
Now my family was doing well, so why not something else to deal with? Just after my 40th birthday, I began to notice a rapid onset of many symptoms that would lead to a diagnosis of hypothyroid. That got under control, and then my vitamin D was found to be nearly zero, which accounted for the severe exhaustion, joint stiffness and fibromyalgia-like muscle pain I was having that was so bad, I could hardly get out of bed. After this had improved with aggressive D therapy, I was found to have Celiac Disease.
That was the biggest shock. After all, I did not fit the "profile" at all. I was (and still am) very heavy and not experiencing the classic diarrhea, nausea, and vomiting I'd heard about. How could I have Celiac??
I began learning about gluten-free eating and discovered that my blood sugar, which had been low my whole life and getting much worse in the previous year or so, became normal for the first time in my life once I learned to stop eating gluten!! The remaining joint pain and fatigue started to let up, and for three months, I felt like a new person.
Then I began to have more symptoms. My sleep became disturbed, I constantly--and I mean constantly--craved sugar. I itched uncontrollably and began to develop athlete's foot and thrush. Then I knew...I had the dreaded Candida. This is the rampant yeast overgrowth from years and years of antibiotic or birth control pill use. I am under treatment and feel considerably better now, but I can't do this horrifically difficult diet, so I have increased my probiotics to twice a day and have a quart of plain fat-free yogurt every day, which is helping. However, I still have to take med for sleep, and there is a LOT of weight to get rid of, in spite of the fact that I don't eat a lot.
So, I mentioned that every one in the house has had a medical odyssey and still hadn't talked about my husband. He was born with a visual defect, coloboma, which compromised--basically made nonexistent--his depth perception and left him with a very high risk of detached retina. We didn't know until just over two years ago just how much a risk he had, but when he suddenly started having issues with the little vision he had in his affected eye, he went immediately to the eye doctor and was found to have not only detached retina, but a cataract as well. Four surgeries and months of frustration with Drew's behavior would follow because Daddy couldn't take him anywhere, but he is now about 99% recovered, and we thank God. He also has sleep apnea, which is treated with a CPAP (after months of threats from me to divorce him because his incessant foghorn-like snoring kept me from getting more than 2-3 hours of sleep a night).
People have said (chirped, actually), "God never gives you more than you can handle," and I have vowed to punch the next one who says it to me, but I do believe that everything happens for a reason, and that what doesn't kill you makes you stronger. I have found that to be true in my life and can say that I'm actually glad for my experiences because I know that they have made me who I am, and that ain't so bad. :)
Friday, January 28, 2011
Who I am, what I'm about, and why I have started this blog...
My name is Liz. I am a 40-something mom who has learned a lot in life and feel compelled to share. I got inspired to start blogging awhile ago. Over three years ago, I lost a good friend very suddenly. Gina was only two months older than I was when she suddenly collapsed and died. She was alone at the time, and we think now that she was dead for about two days before she was found. She was 41 and was staying at her parents' summer home in Delaware (although it was October then). Her father was doing a lot of remodeling of their house in Baltimore, and it was just easier for her to stay in Delaware while he worked on the other house. Her parents had planned to surprise her with a completely redecorated bedroom when she got back, and because she was disabled and unable to drive, they checked on her every weekend.
She'd been having problems with her asthma for several months, and they were concerned about having her stay alone, but she apparently insisted she'd be okay. We talked on the phone--and ran up horrendous bills, which her parents paid in full without complaint--chatted on the computer, and kept in constant touch.
Then I tried calling her one day, and she didn't pick up. Surprised, I figured she'd call right back, as she always did. When she didn't, I thought she might have gone back to the hospital and that I'd hear from her in a few days.
Then I got an e-mail from her account with her name in the "from" and "subject" lines. I thought this was odd and was immediately concerned...and then stunned and distraught as I read from her brother that she'd been found dead, next to her bed, holding her nebulizer.
Gina and I had become friends because of some health issues we shared. I don't have asthma, but she and I both had hydrocephalus and epilepsy and ran an online support group together.
Hydrocephalus. What a word! How does it roll so easily off my fingertips? I know it's a big word, and most people have no clue how to say it or what it means. This is the proper name for the chronic buildup of fluid inside the brain. There is no cure, only treatment, and the treatment is surgical. The shunt--a thin, flexible catheter that drains the fluid constantly--is a man-made device that breaks down over time and needs to be periodically replaced, in whole or in part. One end of the tube is inserted into the ventricle (the pathway through which the fluid would normally circulate) and probed down into the peritoneal cavity near the stomach so the fluid can drain and is absorbed into the bloodstream. Both Gina and I had been diagnosed with "hydro," as we called it, when we were infants, and we had both had about a half dozen shunt surgeries. I would later learn that she had a very large porencephalic cyst. The cyst consumed about a third of the space on her CT scans and MRIs.
While she was doing well with her hydro, Gina continued to have problems with her asthma and spinal stenosis, which is a constriction of the spinal cord. Her epilepsy was also an ongoing issue. We have since learned that her death resulted from a "complete simultaneous shutdown of [her major] systems." Even now, I have questions, and I know they'll probably never be answered, but I want the world to know she existed and carry on the advocacy work she started. I hope I can make her proud.
She'd been having problems with her asthma for several months, and they were concerned about having her stay alone, but she apparently insisted she'd be okay. We talked on the phone--and ran up horrendous bills, which her parents paid in full without complaint--chatted on the computer, and kept in constant touch.
Then I tried calling her one day, and she didn't pick up. Surprised, I figured she'd call right back, as she always did. When she didn't, I thought she might have gone back to the hospital and that I'd hear from her in a few days.
Then I got an e-mail from her account with her name in the "from" and "subject" lines. I thought this was odd and was immediately concerned...and then stunned and distraught as I read from her brother that she'd been found dead, next to her bed, holding her nebulizer.
Gina and I had become friends because of some health issues we shared. I don't have asthma, but she and I both had hydrocephalus and epilepsy and ran an online support group together.
Hydrocephalus. What a word! How does it roll so easily off my fingertips? I know it's a big word, and most people have no clue how to say it or what it means. This is the proper name for the chronic buildup of fluid inside the brain. There is no cure, only treatment, and the treatment is surgical. The shunt--a thin, flexible catheter that drains the fluid constantly--is a man-made device that breaks down over time and needs to be periodically replaced, in whole or in part. One end of the tube is inserted into the ventricle (the pathway through which the fluid would normally circulate) and probed down into the peritoneal cavity near the stomach so the fluid can drain and is absorbed into the bloodstream. Both Gina and I had been diagnosed with "hydro," as we called it, when we were infants, and we had both had about a half dozen shunt surgeries. I would later learn that she had a very large porencephalic cyst. The cyst consumed about a third of the space on her CT scans and MRIs.
While she was doing well with her hydro, Gina continued to have problems with her asthma and spinal stenosis, which is a constriction of the spinal cord. Her epilepsy was also an ongoing issue. We have since learned that her death resulted from a "complete simultaneous shutdown of [her major] systems." Even now, I have questions, and I know they'll probably never be answered, but I want the world to know she existed and carry on the advocacy work she started. I hope I can make her proud.
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