Monday, April 30, 2012

Fighting Epilepsy with a Fork

One more week until we start the ketogenic diet.  I am looking forward to it with every fiber of my being!  The more I research it, the more I read about children who have been miraculously cured of seizures, even after returning to a normal diet.  It does, after all, date back to biblical times.  Here is an interesting article I found from 2008 that explains it pretty well.  I believe some things have changed slightly since then, but the general idea is still the same.

"Fighting Epilepsy with a Fork" by Jeffrey Sheban
The Columbus Dispatch,  March 2008

D.J. Fosselman went two years without eating fruits and vegetables.
His mother not just allowed but supplied a steady diet of bacon and cream cheese instead.
The 8-year-old first-grader from Orient is among an increasing number of children with epilepsy whose lives have been transformed by a diet dating from biblical times.
The high-fat ketogenic diet is becoming a treatment of choice to combat seizures in youngsters who don't respond to drugs alone.
"Most children will be controlled on the first medication they take, but, for those who aren't, we can consider the diet," said Debbie Terry, a pediatric nurse at Nationwide Children's Hospital. "It's not a first-line treatment, but we are increasingly using it as an earlier option."
The hospital has put more than 70 children on the ketogenic diet since 1995.
Of the 54 patients who started the diet between 1998 and 2006, 52 percent had at least a 50 percent reduction in seizures; 14 percent had at least a 90 percent reduction.
"It does work, and, for some kids, it's dramatic," said Nancy Brantner, executive director of the Epilepsy Foundation of Central Ohio.
D.J. had his first seizure on Sept. 30, 2003, at age 3 1/2.
His mother, Thelma, was playing with him on the floor. Suddenly, the boy went to his side; his eyes rolled back, and his face turned blue. She thought he was dying.
By the time the rescue squad arrived, however, he was breathing normally.
Weeks later, he was having "drop attacks" -- short, total blackouts that left him dazed, confused and often bleeding from the chin after hitting the ground.
The cause: epilepsy.
Within several months, D.J. was having as many as 100 seizures a day and wearing a protective helmet at all times.
Doctors tried four drugs over 15 months, but nothing helped.
D.J. couldn't form complete sentences and didn't recognize his mother.
"I'm thinking, 'I've lost my son,' " said Fosselman, a registered nurse.
Then the family heard about an Atkins-like diet -- the primary treatment for epilepsy in the 1920s but a largely forgotten approach after anti-seizure drugs were developed two decades later.
Within a week of going on the strict high-fat, low- carbohydrate regimen, D.J. was seizure-free.
"There's no doubt in my mind that the diet saved him," Fosselman said.
D.J. is among many beneficiaries of the ketogenic diet, according to Brantner.
Yet medical experts aren't sure exactly how and why it works.
Because of the side effects -- including constipation, vomiting and weight loss -- health experts prefer that children not remain on the diet for much longer than two years.
D.J., who abandoned it a year ago, still follows a less-strict version.
Some people view the biblical tale about fasting to end fits, possibly epileptic seizures, as an early reference to the ketogenic diet.
The diet was catapulted back into popularity in 1994, when a movie executive who had a child with uncontrolled epilepsy took him to Johns Hopkins Hospital in Baltimore, where a ketogenic diet halted his seizures.
His father promoted the treatment and produced . . . First Do No Harm, a 1997 made-for-TV movie starring Meryl Streep.
The regimen, which bears some similarities to the high-fat and -protein Atkins diet, essentially puts a patient in a starvation mode by denying carbohydrates, forcing the body to burn fat.
The liver then produces ketone bodies, which circulate through the body, including the brain, and become concentrated in the blood.
For children on the diet, about 90 percent of their total calories come from fat -- almost twice that of the Atkins diet.
A typical dinner might consist of a breadless "sandwich" of fatty ham or bacon, cream cheese and mayonnaise, washed down by a "milkshake" of heavy cream, artificial sweetener and cinnamon or another spice.
Fruits, vegetables, bread and sugary snacks are out.
Most doctors and parents prefer medication to control epilepsy because of the lifestyle changes and discipline required by the diet, said Dr. E. Steve Roach, the director of child neurology at Nationwide Children's and a professor of pediatrics and neurology at Ohio State University.
"It's a good treatment, but it's not for everyone," he said.
Still, "If it comes down to a choice between a regimented diet and seizures, I think that's an easy choice."
Three years ago, the daughter of Amanda and David Lortz of Westerville was found to have epilepsy.
Lauren, then 2, was having thousands of seizures a week and not being helped by drugs, her mother said.
Emily C. de los Reyes, a pediatric neurologist at Nationwide Children's, put Lauren on the ketogenic diet a year ago.
"It was our only hope," her mother said.
Within a week, Lauren was back in preschool -- after missing most of the previous year because of seizures, which have been reduced by about 95 percent.
The girl continues to take an anti-seizure drug, but her mother is convinced that the diet makes the difference.
"This diet has given her her life," she said. "I can't say enough good things about it."
Information from the Contra Costa Times in California was used in this story.

Sunday, April 29, 2012

Small Steps in the Right Direction

As I previously posted, Levi had to go back up on Phenobarbital because the seizures have been worse, and also because we have to wean Topamax since it can increase the risk of certain side effects when combined with the ketogenic diet.  I was sad to increase Phenobarb.  Levi had become so much more awake and alert, was kicking his legs, and smiling...I didn't want him to lose that!  As it turns out, the Phenobarb increase has done nothing but help the seizures slightly.  He was having up to and even over 100 a day, and now the range is around 55-80.

Surprise, surprise!  The decrease in Topamax has had tremendous results in the area of alertness!  Levi continues to smile and kick his legs, thank God!  He enjoys laying under the gym and looking at all the toys, which he seems to be seeing more clearly.  We keep the toys hanging low so that when he happens to move his arms he will feel them.  Before this week he has never had any interest in touching them, but now he moves his arms more, and hits the toys, albeit accidentally.  Even more exciting, he has been lifting his right hand up to feel the little elephant, over and over again, sometimes leaving his hand against it.  This is HUGE!  My mom has been kissing his little cheeks since the day he was born.  Now when she asks for a kiss, HE OPENS HIS MOUTH!  He understands what she says!!  It's too cute, he looks like a little fish.  He's been giving kisses to all of us, and to his therapists Shawnery and Mary.  He doesn't wait to be asked, he instigates it himself now :)

I could go on and on about how exciting it is to see these new developments.  We start the ketogenic diet a week from tomorrow, and we are praying that Levi continues to gain ground developmentally, by leaps and bounds!  One day Levi will be seizure free, med free, and delay free.  From our lips to God's ears!  I just have to thank Him for giving us the precious gift that is Levi.  Every day is a blessing!  

Here's the video of Levi touching the elephant.

Saturday, April 21, 2012

Neurology Visit, New Med Plan, Ketogenic Diet

We had a visit with our regular neurologist on Wednesday.  It was great to see her!  She has been on maternity leave for a few months, spending time with her beautiful new baby girl.  We had a long list of questions, and were so glad to see Dr. Chrusciel because she knows Levi so well, and we trust her completely.  She conferred with Dr. Arun and came up with a new med plan to begin implementing while waiting to start the ketogenic diet.  Due to the large amount of seizures in recent weeks, we are going back up on Phenobarbital.  That did not please me, but it's necessary.  It's only been a few days and already they seem to be lessening slightly each day, so that is a good sign!  We are weaning completely off Topamax by one pill a week, so it will take eight weeks to be completely off of it.  She said it's also very sedating, which I had forgotten, since he's been on it almost a year.  I was glad to hear this.  Levi has become so much more awake and animated, I didn't want him to lose that as we go up on Phenobarb, but thankfully taking Topamax down will counteract that.  The ketogenic diet and Topamax should not be used in conjunction with each other because they both have the potential to cause kidney stones and, I believe, acidosis.  Whatever the reason, I'm thrilled to be weaning some of these meds!!  The neurologists have determined that, except for Topamax, all the meds he's on (Keppra, Lamictal, Clobazam) are not even at therapeutic levels, so once Topamax has been weaned, we will begin weaning something else.  Again, this pleased me greatly!  I like the direction we are heading, and pray every day that the ketogenic diet is our miracle!  I know there will be one, in God's timing, but I'm hoping with every fiber of my being that this one is it!

We will be starting the ketogenic diet on May 7.  We will be admitted into the hospital in the morning, and begin the diet at lunch.  His entire diet will change.  The formula will be switched to ketocal.  Since he's been on  vanilla flavored Nutren Jr, he loves his bottle, so extra prayers that he will take well to ketocal are greatly appreciated!  I've tried some of the items on the diet (cottage cheese, whipped up heavy cream, scrambled eggs with heavy cream and cheese) and he's done well with them.  Four of the six meds he takes are liquid, and all of these will have to be changed over to pill form.  I have to say I'm looking forward to that.  He's used to taking crushed pills on his food, and it's actually easier to give than the liquid form.  I have found so many success stories of children who have been on the diet that I am now excited about beginning.  Please keep Levi in your prayers!

Monday, April 16, 2012

More Seizures

Today was a really heavy seizure day.  Not sure of the final count (the tablet is in the other room and Levi is trying to fall asleep on my lap), but I know we hit over 100.  Thankfully, he hasn't had any nonstop episodes.  I spoke to the neurologist today about weaning all the way off Clobazam.  She seemed fine with it, but we have an appointment on Wednesday and will discuss it in more detail.  Please continue to keep Levi in your prayers!

Sunday, April 15, 2012

Seizures Going Back Down?

Today was a wonderful day!  I noticed through breakfast that Levi was having very few seizures.  During church I noticed only 6, three of each type.  We had a nice relaxing day around the house.  I put a roast on the stove, filled an Etsy order, and got a little sewing done for the craft show coming up in a couple weeks.  Levi was happy to hang out with his dad.  For lunch he actually drank 8 ounces of the new formula, Nutren Jr.   At dinnertime the seizures picked up.  I wonder why he seems to have more at that time?  The final seizure count was around 70, which is a lot, but certainly better than 100!  All  in all, it was a wonderful day!

Saturday, April 14, 2012

Another ER Visit, Ketogenic Diet Decision

Thursday night for about an hour and a half during dinner time, Levi was having back to back seizures.  We were just about to either call the neurologist or take him to the ER when they stopped.  He was really tired afterwards, but acting normal.  At 4:00 the next morning he woke me up with more nonstop seizing.  We called Cardinal Glennon and then took him in to the ER.  We figured they would give him a rescue med, which he has never before needed.  By the time we got there the seizures were occurring normally again.  We spoke to a new neurologist about possibly starting Depakote in the future, and received a prescription for diazepam, a seizure rescue med, in case he had that problem again.  By this point we were definitely certain that we wanted to start the Ketogenic diet -- the sooner the better!  One of the neurology nurses came to visit us while we were still in the ER to speak with us about the diet and give us a questionnaire to fill out regarding Levi's current eating habits and what types of food he likes.  We let her know we have made the decision to go ahead with the diet, and filled the paperwork out before we went home.

At this point, this is where I stand.  I'm tired of trying medications that work so well for some kids but either do nothing or cause more seizures for Levi.  I'm tired of watching him go through seizure after seizure and be able to do nothing but try to comfort him.  I'm tired of counting seizures and dreaming of the day when they will STOP.

It's my belief that drug therapy has been tried, and has failed, so it's time to go on to other methods of epilepsy control.  The Ketogenic diet is our first choice.  It's a high fat, low carb diet that forces the body to burn fat instead of sugars. No one really know why this works, but it does, in about 2/3 of the children who try it.  You can ready more about it at or  We are looking to begin the diet in mid may.  It requires a hospital stay of at least 3 days to get him acclimated and bring his body into a state of ketosis.  In the meantime I would like to wean Clobazam (Onfi) all the way off and not begin any new meds.  We have a neurology appointment on the 18th of this month and I'll see what they think of my plan. LOL

On to brighter things, even though Levi has been having many extra seizures, and sometimes strange jerking movements, he has been very alert and happy!  He smiles a lot, and holds his head better than he ever has.  When he sleeps he has been curling into a little ball, it's so cute!  He wants to stand a lot, and his entire body seems so much stronger!  I stand him on the floor between my legs while I'm sitting on the couch and only have to watch his head a little.  It's truly amazing to watch him begin to wake up!  Hopefully this diet will be the miracle we need.  It really is the only thing out there that has actually cured epilepsy for some people.  Prayers are always very much appreciated!  

Saturday, April 7, 2012

Dietitian Appt, ER Visit, and More...

This last week has been a busy one for us!  My youngest sister Casey just moved back to the area (YAY!) and we had three of her six children last weekend while they moved.  It was awesome!  We had Faith, 7; Allie, 6; and Titus (aka Cheetoh), 1.  We went for walks, played Zumba on the Wii, and had a great time.  It was a lot of activity for Levi, but he did seem to enjoy himself.  Titus kept talking to him.  I think it's so good for him to be around a baby close to his own age.  He can learn so much from Titus!

The first part of the week Levi was floppy and listless.  On Tuesday he ran a fever and had a strange wheezy, labored breathing pattern, so off we went to the Cardinal Glennon ER.  We left the house around 8:30 and didn't get home until 4am!  As usual, they did a CT scan and x-rays to be sure that his shunt was working well, which it is, thank God!  He had an IV for fluids, and we were sent home.  I was concerned that the labored breathing was due to the increase in Clobazam last week, but fortunately that was not the case, and it was only a virus.

Thursday we had our first appointment with the dietitian in the hopes that she could give us new ideas for increasing his caloric intake.  He's growing taller just fine, and he looks more pudgy, but for some reason he is stuck at 17 pounds.  So the dietitian, Barbara, switched his formula to Nutren Jr. or Pediasure Peptide, both vanilla flavored.  These each have a higher calorie content than Nutramigen.  She sent us home with samples and told us to call next week and let her know which works the best.  We started with Nutren Jr., which he took readily at first, but now not so much.  It's just like when we tried to switch him to milk, and he ate less and less until we gave in and put him back on formula.  It has been challenging, to say the least.  Last night he flat refused to drink any more after he downed the bottle with meds (less than an ounce), and wouldn't take pedialyte either.  So I spent an hour dropping pedialyte into his mouth with a straw until it was gone.  Boy was he mad!!!  I wasn't too thrilled, either. lol

Barbara wants Levi to eat more table foods, so we will be blending up our meals for him.  I switched him from Gerber yogurt to Yoplait, which he is thoroughly enjoying.  He is eating his solids very well, thank God!  We just have to get him past this hump with the new formula, and all will be well.

As far as seizures go, we have seen some great improvements!  He is down to about 40 a day now, and they seem to come in groups.  Thursday he was actually seizure free for about 5 hours, and yesterday for about 3 hours!  I will be contacting the neurologists on Monday to see if we can/should go up on Clobazam again.  We have an appointment with them on the 18th, but this is not something I want to put off!  Hopefully we have room in increase and he will become seizure free for good!!!

He's been much more awake lately, too!  The fast movement/shaking of his eyes is greatly improved as well.  He seems able to focus much more, and has been so happy!  His toothy grins are just priceless!

That about brings us up to speed.  We look forward to having a wonderful Easter tomorrow, made that much sweeter because last year we spent Easter in the hospital.  We hope you all have a Happy Easter!  Don't forget to thank Jesus for giving his own life for each one of us!!