I know it's been a long time since I last wrote, but honestly, there hasn't been much to write about. All winter, I was stressed and sleepless, but spring is here now, and with it, I'm seeing improvements in my health and outlook.
I'm especially excited about a universal event occurring tomorrow. It's known as Purple Day. http://www.purpleday.org/. This is an international awareness day for epilepsy. Since I have always had epilepsy, I think it's important to spread the word, but it's not about me anymore. I know too many people who struggle every single day for some semblance of normalcy in their lives, but because of seizures, medication effects, or damage to the brain from the epilepsy, they are unable to know what it's like to do even simple things for themselves without being at risk of severe injury--or even death.
Yes, people have died from epilepsy. I know...I hadn't thought much about it myself until a few years ago. To me, seizures were a disappointment and always made me feel like crap--physically and emotionally--for a few days, but I always knew I'd be safe during them, I'd recover, and I'd walk on. They were merely a nuisance. I have several minutes of signs of an impending seizure, and they were almost always at night. Even when I was alone during them--a very rare occurrence--I could always get into the middle of the bed or even onto the floor. Surprisingly, many people don't have that ability. They get little, or even no warning before it strikes. This can result in any number of injuries. Death can also result from falls, injury to the head, or even cessation of breathing.
Another thing most people who don't deal with epilepsy don't know about it is that there are many types of seizures, and even types of epilepsy. I know many, many patients and caregivers who are far more educated than I am on the various types of both epilepsy and seizures themselves.
My best friend found out the hardest way possible when her infant son was diagnosed with a rare type that is even life-threatening. It's Infantile Spasms http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1464162/, which actually don't look like much, but they usually occur in large clusters that damage the developing brain. Jimmie was, at one point, experiencing dozens per day, and they looked as if he were wiping his eyes. Today, he is almost six years old, but he's like a baby, unable to talk or convey his needs in any intelligible manner. When he was 20 months old, his IS progressed to the dreaded Lennox-Gastaut Syndrome http://en.wikipedia.org/wiki/Lennox%E2%80%93Gastaut_syndrome, which occurs in many IS children and is even more severe and harder to control. Thank God, Jimmie is responding well now to a multiple medication regimen and was actually seizure-free for over a year until he had a recent setback when withdrawing from one of his medications. He has also recently been diagnosed with autism, which Lacy and I both knew he would be, but now, we're hoping he can finally get some necessary services. He has all the same needs as a young toddler, even though his peers have learned how to tie their shoes and pretend with multiple playmates.
Sadly, although Lacy had some experience and knowledge of epilepsy, mine was about all she had to go on, and the biggest problem I'd had was medication effects. She met me about a year after I had withdrawn from the culprit and switched to one I knew worked better, but I still had some minor issues with it, and she'd only seen a single "grand mal" (or "tonic/clonic," as they are now often called) http://en.wikipedia.org/wiki/Tonic%E2%80%93clonic_seizure. In no way did it prepare her for Jimmie's struggle, although she knew to call me when he'd had his first spasms. She and I had met in college, and she'd seen me graduate (right next to her in line!). She knew I drove, was married, and had a child. In fact, when I had the one seizure she'd seen, I was pregnant with my second child. She'd seen a few of my smaller seizures, too--which I didn't even know were seizures until after my daughter was born, even though I'd always had them.
Would you recognize a seizure if you saw one? How about a Simple Partial http://en.wikipedia.org/wiki/Simple_partial_seizure (my smaller seizures, which are almost invisible to anyone who doesn't know what they're looking for)? If someone wandered, dazed and glassy-eyed, into the street, possibly making a chewing motion, even though they aren't eating, would you think it was a seizure? This is why Epilepsy Awareness is so important, too.
Another big reason to be aware of epilepsy is that the treatment, for some of us, is even worse than the seizures themselves. All anti-epileptic drugs (AEDs) can, and often do, have serious side effects. It's not uncommon to have concentration and/or memory problems from them. They are also known to result in potentially severe nutritional issues, such as vitamin D or B6 deficiency, and a common complaint is fatigue or "spaciness."
Like autism, epilepsy comes in all degrees and types. I am so mildly affected that no one would know unless I told them. Others have seizures of some type every day, and of course, there's everyone in-between. About half of us will never know the cause of our epilepsy. Some have many triggers, or things that set seizures off. A cause may be lack of oxygen to the brain from birth; bleeding in the brain from prematurity, injury, or stroke; or several other things. Common triggers are things like bright, flickering lights; sleep disturbances; hormonal changes; dietary sensitivities; illness (especially with fever); missing medication doses, or even season/weather changes. For a fair number of us, trigger avoidance alone can give excellent seizure control. For others, trigger avoidance along with medication gives us complete control, even of triggers we can't avoid, but for many, even avoiding triggers and taking medications doesn't help much. Some resort to surgery, where the origin of the seizure activity, such as a temporal lobe, is removed, and some achieve much better control as a result, but many have to stay on medications and may even experience frequent seizures, although the surgery can often reduce the number of seizures, or their severity/duration. Others find that a Vagus Nerve Stimulator (VNS) http://en.wikipedia.org/wiki/Vagus_nerve_stimulation, which works something like a heart pacemaker, helps them. For those for whom surgery is not an option, special diets, such as ketogenic (very high fat, no sugar) or gluten-free (avoidance of wheat and wheat products, barley, oats, and rye) are possible options. Others find that avoiding artificial sweeteners, dyes, or preservatives helps them have better seizure control. The hardest part of managing epilepsy can be identifying and avoiding triggers, or it may be remembering to take the medication as prescribed, especially if more than one medication is necessary, or several doses have to be taken throughout the day. In any case, it can be very complicated to manage.
It's also very important to be informed about recognizing epilepsy and various types of seizures so you know what--and what not--to do. Never, ever force anything into the mouth of someone having a grand mal/tonic clonic seizure. Teeth can be broken and even swallowed. The tongue cannot be swallowed. It may be bitten badly, but it will heal. Do not put your fingers/hands into the person's mouth or restrain them in any way unless they are in imminent danger of death or serious injury from falling from a height, walking into a busy street, etc. You can be badly hurt! Our movements are involuntary, and we don't want to hurt you, but during a seizure, anything can happen, so be calm, move any hard objects, loosen ties or scarves around the neck, and call 911 for any seizure over ten minutes long, if any serious injury is present, or if the patient is diabetic or pregnant.
So, please wear purple tomorrow in honor of anyone you know who lives with epilepsy or has died as a result of it. Epilepsy affects a shocking number of people--about as many as autism does--yet, like autism (which can also involve epilepsy), it is so sadly misunderstood. People who have epilepsy are just like anyone else; they just want to be loved and accepted for who they are. Thank you! :)
Sunday, March 25, 2012
Friday, January 20, 2012
What I Have Learned From 15 Years As An Autism Mom
Well, it's here. Fifteen years ago today, my long-held suspicions were confirmed: my son was diagnosed with autism. He was 2 1/2 then, and I had been screaming, yelling, and begging doctors for two years to see that there was a problem and to help. Now we finally had a diagnosis, so why was I so upset? I was upset because there are some things I hate being right about...and I'll admit that my reaction was one of selfishness. After all, I already had my own hydrocephalus and epilepsy to contend with. How would I do that and add autism to the mix? What could be done for him...and for me? How would I accommodate the needs of my daughter, then only 5 1/2 years old?
When I first got his diagnosis, it was a Monday, and the eval was over the course of several hours split into two days--yes, a Friday and a Monday. All weekend, I was ready to pop!! The waiting was excruciating, to say the least, but now we knew, and it was time to figure out what it meant for him and for us.
Even today, I can't tell you how I have managed, especially since my epilepsy became quite ugly from all the stress in the early years, but I am also proud to say that I live in a state that has superior services for kids with special needs, particularly autism. Although I was still in something of a haze through our few months of Early Intervention, I learned quickly that we had excellent Home-Based Therapy Services (HBTS) at our disposal. I was also assured that Drew would respond well to them.
Even after we got started, my fear seemed to suffocate me. We were several states away from any family, knew few people, and were having to deal with something I had been told repeatedly was "rare." I know parents of newly-diagnosed autistic kids have a hard time grasping that, but yes, fifteen years ago, it was believed that autism occurred in only 1 of about 10,000 kids!! Even then, I knew that seemed to be false, but that was what I had kept hearing, so my pleas for help had fallen on deaf ears, even though my son wasn't babbling, was constantly running away from me, could not stand to be held, and would in fact even arch his back and scream whenever I picked him up...but I, mom of two, eldest of five, and babysitter since age eight, knew nothing. They knew everything, because they were the doctors.
Sarcasm aside, I was scared to death. I knew nothing about what to expect for him and his future. Even the first book I picked up, which was 8 years old at the time, spoke of extremely high rates of retardation and the importance of finding a group home or institution early. It also said that even those who weren't placed in "homes" were on several medications to deal with behaviors and were often very physically violent, not toilet trained, and that their issues often tore marriages apart. I had a multitude of fears about that, too. I knew all too well that medications could cause all sorts of side effects and reactions, and if he had any "invisible" effects, how would I know? He couldn't tell me.
I posed the medication question to his therapy staff and coordinator, who all said to give them six months to get Drew talking and then to determine if medications were still necessary. They did get him to start speaking in short phrases and simple sentences, and my worry slowly started to abate. I was able to communicate with him, and he could do so with me, although there were significant expressive language gaps and remain so today.
I remember thinking what a devastating diagnosis autism was, and I was told by a mom online (who knew personally) that it wasn't. I remember being shocked and hurt that she seemed to be blowing off my anger and fear, but I learned quickly that she was right. There are, indeed, many worse things. Yes, it has changed who I am, taxed my marriage, family life, and belief in myself. I would be lying to say otherwise, but my son is growing, maturing, and learning more every day. He can do so many things for himself and even plans to go to community college to "work with computers." I have no reason to believe he can't. He is increasingly self-sufficient, and although we still have to deal with occasional behavioral difficulties and outbursts, he amazes me every day with what he can do. If he's in the car with me, I never get lost--and I mean never!! He has a steel trap memory. He is friendly, polite, and affectionate. How many seventeen-year-old boys still hug and kiss their parents good night?
I know autism will always be inseparable from who he is, and although I winced for several years at the term "autistic," I do understand now when affected adults insist on using it, and that we not say that they "have" autism. I am learning to listen to all of them and help him become a happy and productive member of the community. I have attended autism conferences and am so grateful to all the adults who have assured and advised me. Temple Grandin, Tony Attwood, and Steve Shore (just to name a few) have been such an amazing asset to the autism community, and I can't ever thank them enough for giving me the confidence and reassurance that my son will, indeed, be happy and learn to make his way as long as I continue to encourage him. Most of all, I accept him and hope that others will, too, because I know first-hand how important that is when you have to deal with a disorder, disability, or medical condition. After all, I have personally lived that experience myself. If he is happy, I am happy.
When I first got his diagnosis, it was a Monday, and the eval was over the course of several hours split into two days--yes, a Friday and a Monday. All weekend, I was ready to pop!! The waiting was excruciating, to say the least, but now we knew, and it was time to figure out what it meant for him and for us.
Even today, I can't tell you how I have managed, especially since my epilepsy became quite ugly from all the stress in the early years, but I am also proud to say that I live in a state that has superior services for kids with special needs, particularly autism. Although I was still in something of a haze through our few months of Early Intervention, I learned quickly that we had excellent Home-Based Therapy Services (HBTS) at our disposal. I was also assured that Drew would respond well to them.
Even after we got started, my fear seemed to suffocate me. We were several states away from any family, knew few people, and were having to deal with something I had been told repeatedly was "rare." I know parents of newly-diagnosed autistic kids have a hard time grasping that, but yes, fifteen years ago, it was believed that autism occurred in only 1 of about 10,000 kids!! Even then, I knew that seemed to be false, but that was what I had kept hearing, so my pleas for help had fallen on deaf ears, even though my son wasn't babbling, was constantly running away from me, could not stand to be held, and would in fact even arch his back and scream whenever I picked him up...but I, mom of two, eldest of five, and babysitter since age eight, knew nothing. They knew everything, because they were the doctors.
Sarcasm aside, I was scared to death. I knew nothing about what to expect for him and his future. Even the first book I picked up, which was 8 years old at the time, spoke of extremely high rates of retardation and the importance of finding a group home or institution early. It also said that even those who weren't placed in "homes" were on several medications to deal with behaviors and were often very physically violent, not toilet trained, and that their issues often tore marriages apart. I had a multitude of fears about that, too. I knew all too well that medications could cause all sorts of side effects and reactions, and if he had any "invisible" effects, how would I know? He couldn't tell me.
I posed the medication question to his therapy staff and coordinator, who all said to give them six months to get Drew talking and then to determine if medications were still necessary. They did get him to start speaking in short phrases and simple sentences, and my worry slowly started to abate. I was able to communicate with him, and he could do so with me, although there were significant expressive language gaps and remain so today.
I remember thinking what a devastating diagnosis autism was, and I was told by a mom online (who knew personally) that it wasn't. I remember being shocked and hurt that she seemed to be blowing off my anger and fear, but I learned quickly that she was right. There are, indeed, many worse things. Yes, it has changed who I am, taxed my marriage, family life, and belief in myself. I would be lying to say otherwise, but my son is growing, maturing, and learning more every day. He can do so many things for himself and even plans to go to community college to "work with computers." I have no reason to believe he can't. He is increasingly self-sufficient, and although we still have to deal with occasional behavioral difficulties and outbursts, he amazes me every day with what he can do. If he's in the car with me, I never get lost--and I mean never!! He has a steel trap memory. He is friendly, polite, and affectionate. How many seventeen-year-old boys still hug and kiss their parents good night?
I know autism will always be inseparable from who he is, and although I winced for several years at the term "autistic," I do understand now when affected adults insist on using it, and that we not say that they "have" autism. I am learning to listen to all of them and help him become a happy and productive member of the community. I have attended autism conferences and am so grateful to all the adults who have assured and advised me. Temple Grandin, Tony Attwood, and Steve Shore (just to name a few) have been such an amazing asset to the autism community, and I can't ever thank them enough for giving me the confidence and reassurance that my son will, indeed, be happy and learn to make his way as long as I continue to encourage him. Most of all, I accept him and hope that others will, too, because I know first-hand how important that is when you have to deal with a disorder, disability, or medical condition. After all, I have personally lived that experience myself. If he is happy, I am happy.
Sunday, August 7, 2011
Heaven has a new angel today...
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
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
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.
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