Become Empowered

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. 

Interview at Noon

One of  the blessings of getting a book published is that it has given me a platform. A platform to share what I've learned through our journey with seizures and autism, and the ability to support others on their own journey. 

On Friday, April 29th at noon in Madison, Wisconsin, on channel 3, I will be interviewed by Madison's own Charlotte Deleste. I'm never sure when an interview is planned what questions will be asked, but no matter what, every time there is the opportunity to share our story and the miracle of the ketogenic diet, there is also the possibility that it might help another child. Being informed is to be empowered.                        

If you live in the Madison, Wisconsin area, please tune in to WISC-TV channel 3 on Friday at noon; and you are also warmly invited to join us as we continue to spread awareness for seizures and autism at Barnes and Noble Madison stores on Saturday, April 30th.

*Please note poster to the left for more detailed information. 

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: 

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.

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.  

New Series begins today!

Today begins a new series of postings crafted to inform, inspire, and empower.

First, it's important to start with the facts (the informing part), so here they are:

• In America there are three million people living with seizures and epilepsy. 
• Every year another two hundred thousand more cases are diagnosed--the majority are children.  
• Thirty to Forty percent of all who have epilepsy have intractable (unstoppable) seizures, meaning they are not able to be controlled with medication. It's also interesting to note that of children diagnosed with autism, Thirty to Forty percent also have intractable epilepsy, and that statistic is climbing.

The first day of February, 1998, our seven-month-old daughter became one of the nearly two hundred thousand diagnosed that year with epilepsy. We soon learned there wasn't a manual that came with this diagnosis.

Before long my journal was etched with prayers and painful sagas of medication trials that didn't stop the relentless seizures. It felt like a torrential storm that wouldn't dissipate until we learned of a diet that stops seizures. We did not, however, learn about it from the doctor. 

Next post (the inspiring part) will contain details about the diet, its amazing roots, and why it isn't prescribed by most doctors. 

Another twitter account violating my blog!

My twitter updates are linked to this blog, but somehow, another twitter account is violating my space! Inappropriate twitter updates have replaced mine. I don't know how this is happening, but apologize if you have have come across them.  

If you read twitter updates that contain vulgar or inappropriate content, please know it is not my twitter account making these updates! I've requested help from twitter and blogger and hope the problem is taken care of.

 In the meantime, please email me if you read any posts that contain anything other than a G rating to paulette.gmb@gmail.com.

Thank you for your understanding.