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Epilepsy’s Big, Fat Miracle
NY Times ^ | November 17, 2010 | FRED VOGELSTEIN

Posted on 11/21/2010 6:47:29 PM PST by neverdem

Once every three or four months my son, Sam, grabs a cookie or a piece of candy and, wide-eyed, holds it inches from his mouth, ready to devour it. He knows he’s not allowed to eat these things, but like any 9-year-old, he hopes that somehow, this once, my wife, Evelyn, or I will make an exception.

We never make exceptions when it comes to Sam and food, though, which means that when temptation takes hold of Sam and he is denied, things can get pretty hairy. Confronted with a gingerbread house at a friend’s party last December, he went scorched earth, grabbing parts of the structure and smashing it to bits. Reason rarely works. Usually one of us has to pry the food out of his hands. Sometimes he ends up in tears.

It’s not just cookies and candy that we forbid Sam to eat. Cake, ice cream, pizza, tortilla chips and soda aren’t allowed, either. Macaroni and cheese used to be his favorite food, but he told Evelyn the other day that he couldn’t remember what it tastes like anymore. At Halloween we let him collect candy, but he trades it in for a present. At birthday parties and play dates, he brings a lunchbox to eat from.

There is no crusade against unhealthful food in our house. Some might argue that unhealthful food is all we let Sam eat. His breakfast eggs are mixed with heavy cream and served with bacon. A typical lunch is full-fat Greek yogurt mixed with coconut oil. Dinner is hot dogs, bacon, macadamia nuts and cheese. We figure that in an average week, Sam consumes a quart and a third of heavy cream, nearly a stick and a half of butter, 13 teaspoons of coconut oil, 20 slices of bacon and 9...

(Excerpt) Read more at nytimes.com ...


TOPICS: Culture/Society; News/Current Events; Testing
KEYWORDS: epilepsy; keto; ketocalculator; ketogenicdiet; ketosis
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To: Hardastarboard
The author’s handling of his son’s nutrition borders on child abuse.

Did you read the article? The kid has drug resistant epilepsy. Only this ketogenic diet works.

21 posted on 11/21/2010 7:37:57 PM PST by neverdem (Xin loi minh oi)
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To: neverdem

Very interesting! My heart goes out to the families that are trying this diet.


22 posted on 11/21/2010 7:42:20 PM PST by Domestic Church (AMDG...)
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To: Hardastarboard

Read the stinking article.

It says......

“But what we are doing is mainstream science. Elizabeth Thiele, the doctor who prescribed and oversees Sam’s diet, is the head of the pediatric epilepsy program at Massachusetts General Hospital for Children, which is affiliated with Harvard Medical School. In fact, the regimen, known as the ketogenic diet, is now offered at more than 100 hospitals in the United States, Canada and other countries. We’re not opposed to drugs; we tried many. But Sam’s seizures were drug-resistant, and keto, the universal shorthand, often provides seizure control when drugs do not. “


23 posted on 11/21/2010 7:58:41 PM PST by metmom (Welfare was never meant to be a career choice.)
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To: Hardastarboard
did the read the article or is this just your kneejerk reaction
24 posted on 11/21/2010 8:06:56 PM PST by markman46 (engage brain before using keyboard!!!)
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To: ConservativeMind

There is a video called “First..Do No Harm” with Meryl Streep in it. It is based on real life story of kid with debilitating seizures. The medical industry was packing the kid full of drugs. He was going to die. His mom (Meryl Streep) had to kidnap him from hospital to get him treated with the ketogenic diet. Per the movie, it worked. The additional information was very interesting. Many of the actors were victims of epilepsy and were greatly helped by this keto diet. I enjoyed the video. Had to watch it for nursing program.


25 posted on 11/21/2010 8:30:00 PM PST by ghostkatz (if you are paying income tax, you are just a sharecropper for the government.)
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To: muawiyah
Remember, you can only consume 40% of your caloric intake in proteins

I'd like to consider myself nutritionally aware, but I hadn't heard of this one, except once. It was the book Into The Wild, where is suggested that his diet of ground animals was making him skinny because the animals didn't have enough fat.

26 posted on 11/21/2010 8:32:54 PM PST by Fractal Trader
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To: El Gato; Ernest_at_the_Beach; Robert A. Cook, PE; lepton; LadyDoc; jb6; tiamat; PGalt; Dianna; ...
The first linked article has the URL for a FReebie.

UH physicists study behavior of enzyme linked to Alzheimer's, cancer

Merck Drug for Cutting Cholesterol Is Promising

A Costly Quest for the Dark Heart of the Cosmos

Should airplanes look like birds? Engineers envision more fuel-efficient design There's more text and a link to the abstract at the source.

FReepmail me if you want on or off my health and science ping list.

27 posted on 11/21/2010 8:43:47 PM PST by neverdem (Xin loi minh oi)
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To: neverdem

The Ketogenic diet has been around for awhile now. Another option for some, when drugs don’t work, is seizure surgery. It’s not for everyone, but it has proven successful in many cases.


28 posted on 11/21/2010 8:55:54 PM PST by paltz
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To: Mad Dawg

My daughter is also on lamictal. She tried keppra first, and she started having terrible rages and other terrible side-effects.

Lamictal has worked so much better, and we are actually weaning her off of all anti-seizure medication. I think by Christmas she may be totally med free!!!!


29 posted on 11/21/2010 8:56:17 PM PST by luckystarmom
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To: Hardastarboard
The author’s handling of his son’s nutrition borders on child abuse.

Please do enlighten us. What is your field of expertise/experience as to epilepsy?

Or is your field of expertise Knee Jerk Judgment?

30 posted on 11/21/2010 10:01:04 PM PST by maine-iac7 (We Stand Together of We Fall Apart)
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To: neverdem
I first heard about this diet several years ago when I worked with epilepsy patients. I remember reading about the young man Charlie, mentioned in this article. It's great to hear that he is doing so well.

The ketogenic diet is tough on the child and parent alike, but not as tough as unrelenting, uncontrollable seizures. I've seen kids have even more than 150 a day. That child is essentially living in a fog. It's difficult to function and learn when most of one's time is spent not fully conscious.

I've also seen children who have had hemispherectomies, where half the brain is removed. These children usually functioned almost as well after the surgery as before, because the constant seizures had more or less destroyed all function on one side.

The ketogenic diet definitely has a place in the medical treatment of children with epilepsy.

31 posted on 11/21/2010 10:07:58 PM PST by susannah59
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To: neverdem
I first heard about this diet several years ago when I worked with epilepsy patients. I remember reading about the young man Charlie, mentioned in this article. It's great to hear that he is doing so well.

The ketogenic diet is tough on the child and parent alike, but not as tough as unrelenting, uncontrollable seizures. I've seen kids have even more than 150 a day. That child is essentially living in a fog. It's difficult to function and learn when most of one's time is spent not fully conscious.

I've also seen children who have had hemispherectomies, where half the brain is removed. These children usually functioned almost as well after the surgery as before, because the constant seizures had more or less destroyed all function on one side.

The ketogenic diet definitely has a place in the medical treatment of children with epilepsy.

32 posted on 11/21/2010 10:08:10 PM PST by susannah59
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To: Hardastarboard
The author’s handling of his son’s nutrition borders on child abuse.

There are essential fatty acids, which come from dietary fat. There are essential amino acids, which come from protein.

There are no essential nutrients supplied by carbohydrates.

This diet is saving that child's life. Nothing abusive about it.


33 posted on 11/21/2010 11:41:23 PM PST by Maven
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To: metmom
Glad you found something that works. I know nothing about the diet, but remember an infant on the Peds unit when I worked at Pontiac General Hospital....(This spelling will be wrong) but he had what is called *status epilepticus*, they tried every thing and the 9 month old child seizured for 24 hours...I didn't work that unit the next day, but have never seen doctors in such a panic before or after that patient. It is very sad to see..

What ever works is great, cause for some, nothing works...You cannot argue with results...

For some its death or severe brain damage...Glad for you and your little one.

34 posted on 11/22/2010 1:49:21 AM PST by goat granny
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To: Hardastarboard
"The author’s handling of his son’s nutrition borders on child abuse."

Why?? It appears that he is using a valid mechanism to prevent the seizures. When the kid grows up, he will applaud his dad's actions.

35 posted on 11/22/2010 4:26:24 AM PST by Wonder Warthog
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To: neverdem
My son (now 30) was diagnosed with Petit Mal when he was in preschool. We put him on meds and from the very first pill, his episodes quit.

He was completely med free by mid 1st grade and we've never seen any symptoms since.

I can't imagine how hard it would be if the meds don't work since we had such great success.

36 posted on 11/22/2010 4:36:31 AM PST by CAluvdubya (Palin 2012...YOU BETCHA!.)
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To: Fractal Trader

Every time you run into any serious work on “The Donner Party” you’ll find it. They had plenty of protein, but not nearly enough non-fats.


37 posted on 11/22/2010 4:46:33 AM PST by muawiyah (GIT OUT THE WAY ~ REPUBLICANS COMIN' THROUGH)
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To: muawiyah

Not “nonfats”, but “non-proteins” ~ that is, carbohydrates and fats/oils.


38 posted on 11/22/2010 5:20:55 AM PST by muawiyah (GIT OUT THE WAY ~ REPUBLICANS COMIN' THROUGH)
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To: muawiyah

The sort of kind of “theory and origin” of this diet as ‘splained to us at Hopkins (though we had already heard of it, and suggested to our local neurological deity - who pooh-poohed it) is that it had been observed that some seizures respond to fasting.

However fasting has this side effect where you starve to death. (See “Albigenisians” for details.) ;-)

So some doc(s) asked himself(themselves), “How can we fool the body into thinking it’s fasting?” And the answer was give protein for all the stuff protein does and fats for energy, etc. Withhold carbs so the body keeps thinking it’s starving and runs on a fat-based rather than a sugar based internal economy.

It’s tricky to run. I got so I could detect hypoglycemia by observation and taking my kid’s pulse. One 12/23 she had a tummy bug AND a cold and got very acidotic. She was hyperventilating. So we spent a night in the hospital getting her gasses right. If you didn’t HAVE to try this at home, I’d say don’t try it at home.

The diet was run by a neurologist and a dietitian at JHU and we weighed EVERYTHING our kid ate on a gram scale. But the dietitian had worked out a scheme of three basic menus with about 30 variation and substitutions for each scheme, including a kind of bogus ice cream!

So we were able to supply a LOT of variety and interest in the meals and have celebrations and so forth.

There was probably a slight retardation of growth and weight gain, but it was slight and, since my kid is now 5’9” or so, I’d say the height problem kind of was resolved, a little, maybe.

What was most thrilling to us was to watch her ‘intellect’ move into high gear in what looked like an effort to make up for lost learning time. Her rate of language gain was amazing to behold. And we still talk a little in sign, now and again.

It was a heck of a ride!


39 posted on 11/22/2010 5:34:18 AM PST by Mad Dawg (Oh Mary, conceived without sin, pray for us who have recourse to thee.)
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To: luckystarmom

I have maintained professional and social acquaintances in the psychiatric profession (It’s good for a pastor to have a small table of pshrinks to whom he can refer and go to for advice), and one says that lamictal is (sometimes) curative.

Wouldn’t that be wonderful!


40 posted on 11/22/2010 5:34:33 AM PST by Mad Dawg (Oh Mary, conceived without sin, pray for us who have recourse to thee.)
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