While speaking at the Barnes and Noble in Madison, Wisconsin, several in the audience had surprised expressions when I gave statistical information about medication and epilepsy. For many, it is shocking to hear that after the first medication fails to control seizures, there is less than a fifty percent chance the second medication will work. After the second medication fails, there is less than a twenty percent chance that medication will ever control seizures. If we knew this information going into that first doctors appointment, would it change the treatment plan for seizures? I hope so.
As recommended by Epilepsia (a publication for neurology professionals) after the second medication fails, the ketogenic diet should be tried. The ketogenic diet carries less risk than any drug on the market, and has a proven track record of nearly one hundred years. So why are so few kids and adults prescribed *dietary therapy for seizure disorders?
Knowledge. The answer to the question above, is simply lack of knowledge and understanding of the diet by medical professionals who treat seizures. In the 1950's when anti-seizure medications were developed, the diet became prehistoric in a sense. Most thought the answer to seizure control was here; but it hasn't arrived for more than forty percent, of the three million Americans who suffer with epilepsy.
If you are the parent of a child that has uncontrolled seizures, and are considering dietary therapy, take the above statistics with you the next time you visit the doctor. When you know the facts, and are aware of all the treatment options, it's easier to make a confident decision. Become empowered.
*Dietary therapy for seizures includes, the ketogenic diet, modified atkins diet, or low glycemic diet.
Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts
Sunday, July 10, 2011
Friday, April 15, 2011
Quarter for a Clear View
It was intentional. The view finder (click here to see as shown on the blog page) was given much thought prior to being chosen as the face of this blog. At first glance it's a bit of a nostalgic, touristy kind of photo, but when I read the instructions on the view finder; the wording, "turn knob for a clear view" caught my attention, and in its own way, mirrors the message of empowerment contained in this blog.
Wouldn't it be great if when we first heard the words, "something isn't right" all we would have to do is pay a quarter, crank a knob, and viola! A manual with instructions would appear; with all of the treatment choices available. Our vision would be clear! We would have all the information to make informed decisions to best help our child or loved one. No more trying to unlock a door from the pile of a thousand keys, or trying to solve a puzzle with many of the pieces missing. Just drop a quarter--wouldn't that be something?
When Christina was diagnosed at seven months with epilepsy, we tried every anti-seizure drug and had every test. No answers as to why the seizures started and worse yet, we could not stop the seizures. An even greater tragedy however, that affects hundreds of thousands of children, is the lack of disclosure and lack of knowledge by those responsible for our children's medical care. In fact, when we stumbled upon another treatment option and inquired about it, the neurologist told us it was not safe for small children. We believed this. Who wouldn't? This was a neurologist, highly regarded in the community, and we trusted him.
Desperation set in when we almost lost our beautiful daughter after several more months of life-threatening seizures. With no treatment options left, and we took a leap of faith and traveled twelve hundred miles to Mayo Clinic. Within days of administering the diet there, the seizures stopped.
When the dust settled we realized that advocacy turned the tables for our child.
Dr. Jeffrey Buchhalter wrote in the forward of Good Morning, Beautiful:
In order for our vision to be clear, we must step up and take on the responsibility for our child or loved one's care. We are advocates. And even though it may seem overwhelming at times, you will get through it. If I can, anyone can. Mother Theresa once said, "I know God will not give me anything I can't handle. I just wish He didn't trust me so much." Can't tell you how many times, I felt this same way, but through it all, the greatest success was found in never giving up.
For a listing of facilities that provide second opinions and great ketogenic and autism care, click here.
Wouldn't it be great if when we first heard the words, "something isn't right" all we would have to do is pay a quarter, crank a knob, and viola! A manual with instructions would appear; with all of the treatment choices available. Our vision would be clear! We would have all the information to make informed decisions to best help our child or loved one. No more trying to unlock a door from the pile of a thousand keys, or trying to solve a puzzle with many of the pieces missing. Just drop a quarter--wouldn't that be something?
When Christina was diagnosed at seven months with epilepsy, we tried every anti-seizure drug and had every test. No answers as to why the seizures started and worse yet, we could not stop the seizures. An even greater tragedy however, that affects hundreds of thousands of children, is the lack of disclosure and lack of knowledge by those responsible for our children's medical care. In fact, when we stumbled upon another treatment option and inquired about it, the neurologist told us it was not safe for small children. We believed this. Who wouldn't? This was a neurologist, highly regarded in the community, and we trusted him.
Desperation set in when we almost lost our beautiful daughter after several more months of life-threatening seizures. With no treatment options left, and we took a leap of faith and traveled twelve hundred miles to Mayo Clinic. Within days of administering the diet there, the seizures stopped.
When the dust settled we realized that advocacy turned the tables for our child.
Dr. Jeffrey Buchhalter wrote in the forward of Good Morning, Beautiful:
When a family confronts a medical care environment that fails to meet the needs of the child or parents, what can they do? As one who has devoted his professional life to the care of children with epilepsy, I can tell you that this occurs not out of lack of concern on the part of health care providers, but lack of expertise and familiarity. This book shares the journey of how one family learned what they could do. Its intent is to impact others' lives and inspire them to do the same as families must assume responsibility for care.
In order for our vision to be clear, we must step up and take on the responsibility for our child or loved one's care. We are advocates. And even though it may seem overwhelming at times, you will get through it. If I can, anyone can. Mother Theresa once said, "I know God will not give me anything I can't handle. I just wish He didn't trust me so much." Can't tell you how many times, I felt this same way, but through it all, the greatest success was found in never giving up.
For a listing of facilities that provide second opinions and great ketogenic and autism care, click here.
Monday, March 14, 2011
Development of The Ketogenic Diet
I've heard it said that history is one of our best teachers. This realization hit hard for me while doing research in a hospital library. Tears blurred the pages and painful emotions tore at me from the deadly diagnosis the neurologist had announced earlier. I was desperate to save my child. Foreign medical jargon and terminology beyond my education inked the pages, but even so I understood enough to know we hadn’t been given all the treatment options. Why?
At the library that day, I read about a diet, developed in the 1920s, that stopped seizures in children. Dr. R.M. Wilder, a diabetologist, and his team at the Mayo Clinic had been working to stop seizures in diabetic children. This research had actually started four hundred years before Jesus walked on Earth by a physician named Hippocrates. Hippocrates believed in healthy eating to heal our bodies. His research on epilepsy included dietary intervention and fasting for kids with seizures. In addition to that, a story in the New Testament, chronicled by Matthew and Mark, told of a boy with epilepsy who was healed by Jesus. "This kind of healing comes from fasting and prayer" (Mark 9:29 NIV).
Inspired by the studies and writings mentioned above, Dr. Wilder prescribed fasting for diabetic seizure children. Do you think he was surprised when many children stopped seizing? It's just my hunch, but I think he expected it. Who wouldn't if the history is taken seriously. Either way, Dr. Wilder then took chemical components in the blood and urine and formulated a diet that simulated the same. In other words, they developed a diet that mimicked fasting--and it worked. The diet was named Ketogenic after the ketones we measure when our body burns fat. The diet was used with great success until the 1950s when anti-seizure drugs were invented, then became prehistoric in a sense. Today we know that thirty to forty percent of patients don't respond to medication. Shouldn't we question whether we should be taking a look back in time?
The answer to the above question of why doctors don't always prescribe the diet is alarming: many simply don't believe the diet works. Some cite it's too complicated (a diet--too hard?). Others simply don't know much about it, or they simply don't have a dietitian trained in administering it. For our family, we felt as though information had been withheld and our daughter's life had been put at risk by not being informed of all the treatment options.
During a speaking event in Madison, Wisconsin, two women marched in with copies of Good Morning, Beautiful tucked in their arms. As tears streamed down one of the women's cheeks, she took my hand in hers and told me how proud she was of me. I was certain her grandchild or child was on the diet, but I was wrong. "I was the one," she exclaimed. In the 1950s, when all medications failed, she was put on the ketogenic diet and it saved her life. She reminisced about her doctor, stating he was old enough to remember the diet's discovery and smart enough to use that information to spare her life.
Monday, April 12, 2010
Advocacy
Last week, I finished a webinar sponsored by Phoenix Children’s Hospital with Dr. Jeffrey Buchhalter, Pediatric Epileptologist, who was also our daughter’s neurologist. I talked about our journey through seizures, the ketogenic diet, and brain surgery. The main point I covered was advocacy. Along with that, I listed three important points that made all the difference and helped get our daughter better.
* Finding the right diagnosis is crucial.
* The best option for treating epilepsy is at a comprehensive epilepsy center.
* Understand the importance of working together with the neurologist and group of doctors. It should be a “team” effort.
Finding the right diagnosis for our daughter meant leaving behind all the “Well, we think … ” and “It could be … ” kind of comments and looking only at the facts. We also had to face the reality that doctors don’t necessarily have all the answers. In many cases of epilepsy, a cause is never found. And more importantly, when dealing with something as critical as epilepsy, the best place to diagnose, treat, and monitor a child with epilepsy is at a comprehensive epilepsy center where they have all the latest equipment, monitors, and expertise.
And here’s our part as parents or caregivers: we need to work together with the neurologist and team of doctors. It is not a one-way street for either party. The neurologist must rely on the parents to follow through with the prescribed treatment and communicate changes and/or concerns. Remember, Moms, Dads, Grandparents and Caregivers: you are the ones who know your child best. Help the doctor do his job by assisting him in that regard. Communicate what you feel, think, and see. And don’t underestimate that little thing called intuition—it is your God-given connection with your child. No one else has it but you.
To listen in to the recorded webinar on epilepsy and treatments with Paulette and Dr. Buchhalter click here: Webinar You will need to register, however Phoenix Children's Hospital sponsers this webinar, and your information is kept private.
Advocacy
* Finding the right diagnosis is crucial.
* The best option for treating epilepsy is at a comprehensive epilepsy center.
* Understand the importance of working together with the neurologist and group of doctors. It should be a “team” effort.
Finding the right diagnosis for our daughter meant leaving behind all the “Well, we think … ” and “It could be … ” kind of comments and looking only at the facts. We also had to face the reality that doctors don’t necessarily have all the answers. In many cases of epilepsy, a cause is never found. And more importantly, when dealing with something as critical as epilepsy, the best place to diagnose, treat, and monitor a child with epilepsy is at a comprehensive epilepsy center where they have all the latest equipment, monitors, and expertise.
And here’s our part as parents or caregivers: we need to work together with the neurologist and team of doctors. It is not a one-way street for either party. The neurologist must rely on the parents to follow through with the prescribed treatment and communicate changes and/or concerns. Remember, Moms, Dads, Grandparents and Caregivers: you are the ones who know your child best. Help the doctor do his job by assisting him in that regard. Communicate what you feel, think, and see. And don’t underestimate that little thing called intuition—it is your God-given connection with your child. No one else has it but you.
To listen in to the recorded webinar on epilepsy and treatments with Paulette and Dr. Buchhalter click here: Webinar You will need to register, however Phoenix Children's Hospital sponsers this webinar, and your information is kept private.
Wednesday, March 10, 2010
Advocates in a foreign land
Like most families dealing with seizures, we had no book of guidelines or tutorials to refer to. As our child's parents, we had to become advocates in a foreign land—the land of medicine. I don't know about you, but we did not have the training for this sort of position. Nope, no background, well, other than high school Biology and Health class. And to be honest, I don't even remember most of that.
In order to be the best advocates for our child in this unfamiliar land, we had to learn about Christina's condition. We researched, prayed, and asked anyone we came into contact with if they knew anything about what we were going through. I read as much as possible about the diagnoses that were inked onto medical charts with our child's name at the top.
Reading through medical jargon was, for me, an act of bravery. I was totally intimidated, but my struggling daughter motivated me onward. I learned the meaning of some words that I still cannot pronounce. And this small act of advocacy provided the knowledge my husband Larry and I needed in order to make one of the most important decisions of our lives.
That decision brought us to the part of our story from which the previous excerpt was taken from Good Morning, Beautiful and now continues below:
Christina moved her head and cried softly. I realized her ears were feeling the pressure change as the plane began to descend. Touching her cheek, I whispered softly, “It will be okay.” Feeling a contradiction in my own words, I knew how serious her condition was and that we didn’t know why she was ill, or how to help her.
The skies remained clear as millions of stars traded places with the lights of the Minneapolis-St. Paul area. As we descended, streets and highways became visible, illuminated by lighting. Looking similar to a miniature racetrack, vehicles moved in different directions.
When the flight attendant came by to check our seatbelts, she offered words of encouragement, citing Mayo as the best place in the country. “They know what they are doing there. We wish you and your daughter the best of luck,” she said empathetically.
A feeling of urgency came over me, for it wasn’t luck that was needed. In fact, it was the farthest thing from Christina’s need. For a moment I hesitated, almost afraid of what the reaction might be, until I could contain it no more.
“Don’t forget to think of her when you pray,” came rolling out, announcing the hope that was burning, dimmed by a tempestuous wind, but still lit.
What we needed for our Christina was a miracle.
One thing was certain we were in the fight of our lives, for her life. With this, just one of the squalls, of a violent storm with the worst yet to come. It would be the storm that would bring us to our knees in desperation and jubilation.
In order to be the best advocates for our child in this unfamiliar land, we had to learn about Christina's condition. We researched, prayed, and asked anyone we came into contact with if they knew anything about what we were going through. I read as much as possible about the diagnoses that were inked onto medical charts with our child's name at the top.
Reading through medical jargon was, for me, an act of bravery. I was totally intimidated, but my struggling daughter motivated me onward. I learned the meaning of some words that I still cannot pronounce. And this small act of advocacy provided the knowledge my husband Larry and I needed in order to make one of the most important decisions of our lives.
That decision brought us to the part of our story from which the previous excerpt was taken from Good Morning, Beautiful and now continues below:
Christina moved her head and cried softly. I realized her ears were feeling the pressure change as the plane began to descend. Touching her cheek, I whispered softly, “It will be okay.” Feeling a contradiction in my own words, I knew how serious her condition was and that we didn’t know why she was ill, or how to help her.
The skies remained clear as millions of stars traded places with the lights of the Minneapolis-St. Paul area. As we descended, streets and highways became visible, illuminated by lighting. Looking similar to a miniature racetrack, vehicles moved in different directions.
When the flight attendant came by to check our seatbelts, she offered words of encouragement, citing Mayo as the best place in the country. “They know what they are doing there. We wish you and your daughter the best of luck,” she said empathetically.
A feeling of urgency came over me, for it wasn’t luck that was needed. In fact, it was the farthest thing from Christina’s need. For a moment I hesitated, almost afraid of what the reaction might be, until I could contain it no more.
“Don’t forget to think of her when you pray,” came rolling out, announcing the hope that was burning, dimmed by a tempestuous wind, but still lit.
What we needed for our Christina was a miracle.
One thing was certain we were in the fight of our lives, for her life. With this, just one of the squalls, of a violent storm with the worst yet to come. It would be the storm that would bring us to our knees in desperation and jubilation.
Monday, March 1, 2010
The middle of the epilepsy storm
I will never forget the first day my husband and I heard the word seizure in connection with our daughter, Christina. We weren’t prepared, but what was worse, the medical community where we lived wasn’t either. Relentless seizures—more than one hundred a day—blew in like a whirlwind. The storm seemed to form out of nowhere. None of us saw this coming, doctors included. The painful truth was warning sirens had been blaring, but we failed to notice.
Desperate times require desperate measures. During the middle of that storm, Larry and I realized the truth in that statement. Below is the first of a series of excerpts from Good Morning, Beautiful, which chronicles our tumultuous journey :
The 727 banked, routing it northbound for Minneapolis. Through the window the wing lowered as stars hung in the clear night sky against the darkness. Some sparkled as a precious gem does when hit by light. Relief at the cloudless sky, rendering a smooth flight, didn’t come as it should. An inner storm was raging, bringing with it gusts of fear and panic. A tear slipped out from already exhausted eyes and began to run down my cheek. Glancing around, the passengers were reading or talking to the persons next to them. Not wanting anyone to notice, I nonchalantly brushed the tear away. Long, sleepless nights in the hospital left my eyes burning and rimmed in red. As I slid my finger into the hand of my tiny daughter, she moved hers slightly to accommodate. Looking more like an infant than the toddler she was supposed to be, below fine blonde curls, her face was thin and pale. Her sea blue eyes were open but showing no sign of what they were fixed on. She was still and quiet. Capped IVs ran into each arm and bruises lingered near them, as well as areas of unsuccessful attempts at placements and blood draws. Tiny veins were not meant for this.
When the tall brunette flight attendant who had seated us before anyone boarded came by, I knew she was being kind by offering food. “Can your baby have anything?”
Holding back emotion, I thanked her and said no. It wasn’t just the special diet we were feeding Christina or the relentless seizures. Truth is, she had not eaten nor drunk anything on her own for weeks. First, she wouldn’t finish her meal. She gagged when my husband or I tried to force drops of formula into her
mouth with a syringe. The nurses also tried to feed her this way, without success. Prescribed much later than it should have, the feeding tube running into her nose held in place with tape was keeping her alive. The tube ran into a portable pump filled with her “special” formula, equipped to sling over my shoulder for transporting her. For now, it sat at the floor near my feet.
Daunting thoughts crept through my mind. Could there be a genetic disorder or cancer that has been missed? Why is this happening to us? God, this must be a cruel joke, after all we went through to have children. How could this be?
Closing my eyes, I held them shut in hopes this was just a bad dream. When they opened, flight attendants were picking up cups, and passengers chatted in the distance. It wasn’t a nightmare, but a blustery wicked storm, swirling life and everything we had known to be normal out of control. The term “failure to thrive” came more than once from the nurses who attended to her at the hospital where we fought to discharge her. Already hardened by previous misinformation, my husband Larry and I were not sure what to think of this latest assumption. Our hope was that the hospital in Rochester would be able to help our daughter, but it would be a while before arriving there. Once on the ground, there was still a two hour drive to make. Looking at my watch, I realized we’d be lucky to make it to admitting by midnight.
Desperate times require desperate measures. During the middle of that storm, Larry and I realized the truth in that statement. Below is the first of a series of excerpts from Good Morning, Beautiful, which chronicles our tumultuous journey :
The 727 banked, routing it northbound for Minneapolis. Through the window the wing lowered as stars hung in the clear night sky against the darkness. Some sparkled as a precious gem does when hit by light. Relief at the cloudless sky, rendering a smooth flight, didn’t come as it should. An inner storm was raging, bringing with it gusts of fear and panic. A tear slipped out from already exhausted eyes and began to run down my cheek. Glancing around, the passengers were reading or talking to the persons next to them. Not wanting anyone to notice, I nonchalantly brushed the tear away. Long, sleepless nights in the hospital left my eyes burning and rimmed in red. As I slid my finger into the hand of my tiny daughter, she moved hers slightly to accommodate. Looking more like an infant than the toddler she was supposed to be, below fine blonde curls, her face was thin and pale. Her sea blue eyes were open but showing no sign of what they were fixed on. She was still and quiet. Capped IVs ran into each arm and bruises lingered near them, as well as areas of unsuccessful attempts at placements and blood draws. Tiny veins were not meant for this.
When the tall brunette flight attendant who had seated us before anyone boarded came by, I knew she was being kind by offering food. “Can your baby have anything?”
Holding back emotion, I thanked her and said no. It wasn’t just the special diet we were feeding Christina or the relentless seizures. Truth is, she had not eaten nor drunk anything on her own for weeks. First, she wouldn’t finish her meal. She gagged when my husband or I tried to force drops of formula into her
mouth with a syringe. The nurses also tried to feed her this way, without success. Prescribed much later than it should have, the feeding tube running into her nose held in place with tape was keeping her alive. The tube ran into a portable pump filled with her “special” formula, equipped to sling over my shoulder for transporting her. For now, it sat at the floor near my feet.
Daunting thoughts crept through my mind. Could there be a genetic disorder or cancer that has been missed? Why is this happening to us? God, this must be a cruel joke, after all we went through to have children. How could this be?
Closing my eyes, I held them shut in hopes this was just a bad dream. When they opened, flight attendants were picking up cups, and passengers chatted in the distance. It wasn’t a nightmare, but a blustery wicked storm, swirling life and everything we had known to be normal out of control. The term “failure to thrive” came more than once from the nurses who attended to her at the hospital where we fought to discharge her. Already hardened by previous misinformation, my husband Larry and I were not sure what to think of this latest assumption. Our hope was that the hospital in Rochester would be able to help our daughter, but it would be a while before arriving there. Once on the ground, there was still a two hour drive to make. Looking at my watch, I realized we’d be lucky to make it to admitting by midnight.
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