Tuesday, May 22, 2012

So Far So Good

Levi is still doing well on the diet.  He doesn't seem to like the food, but he does tolerate it and is eating everything at each meal now.  The seizures have gone up some, but are still slightly less than when we started the diet.  He is still so much more alert than he used to be, and happy!  He smiles all the time.  His head control has grown by leaps and bounds!  He gives us kissed, moves his arms and kicks his legs, plays and looks at the toys on his gym, successfully gets his hand to his mouth to chew or suck on, and more!  We have noticed that he is maneuvering the trunk of the elephant on his gym into his mouth.  It's too cute!  Although he doesn't yet grasp toys, he does touch them repeatedly.  We have been on the ketogenic diet for only two weeks, and I'm amazed at the strides he's making developmentally.  I'm excited to see where he'll go from here!


Saturday, May 12, 2012

Ketogenic Diet Update

Sorry I haven't updated sooner, I have been busy!  We were able to go home on Wednesday, which was day 3, as planned.  Levi's blood sugar remained stable the entire time, his ketones were steady, and all was good.  I've been busy making formula and meal recipes, which are very simple since he's still so little.  Thursday night he was running a fever of 101.1 and just as I was about to feed him he threw up.  I didn't know if he had caught a virus, if the many seizures were causing the fever, if he just gagged on the medicine/water combo, or what was going on.  I stayed up with him most of the night to be sure he was alright.  The next morning he was bright eyed and chipper and has not had any issues since.

When we left the hospital his daily meal plan consisted of four meals: a 5 ounce ketocal bottle twice a day, scrambled eggs/applesauce/heavy cream for breakfast, and Gerber turkey/canned green beans/heavy cream for dinner.  He has let us know in no uncertain terms that he does not like scrambled eggs, so we replaced it with Gerber beef, and he didn't like the texture of canned green beans, so he now has Gerber green beans.  I think that will work out better.

I have to say the actual diet is very much easier than I had anticipated.  I just weigh out everything and feed him.  The extremely difficult part is getting him to eat it.  Most kiddos are hungry and want to eat.  Not Levi.  He is better since we've decreased Topamax so much (4 pills a day down from 12!) but he's just not as hungry as I would like him to be.  When he wants to eat he does a great job, but when he doesn't want to it's all I can do to get the food down him.  Talk about stressful!  BUT we are only on day 6 and we've already seen a huge difference in many areas: he's so much more alert, his eyes are wide open and bright, he doesn't have much of the rapid eye movement anymore, he's more active, kicking his legs and moving his arms.  Whatever we have to go through is worth it to see the positive changes we've seen so far.  The seizures are lessening as well, in duration as well as in number.

So please keep Levi in your prayers!  Things are going very well, but he still has a ways to go to reach seizure freedom.

Tuesday, May 8, 2012

Ketogenic Diet Day Two

The day started well today.  Levi slept comfy all night, and I was so tired I actually slept good as well.  The morning bottle went down fine; we changed his clothes and headed out onto the playground for some sunshine and fresh air.  Levi loved it!  We relaxed on a bench and after a while he fell asleep.  When we came back to his room he slept for 2 hours.  Poor little guy was all tuckered out.  The dietitian came to see us shortly after we returned.  This meeting was very clarifying for me!  I thought Levi's meal plan of four meals a day included four bottles and 2 solid food meals.  I was wrong.  He does not get a bottle of ketocal with the solid food.  Suddenly everything made sense!  I swear I could feel the tension in my shoulders begin to melt away.  So the plan is for Levi to have a breakfast of scrambled eggs, applesauce, and cream at 8, ketocal bottle at noon, dinner of Gerber turkey, real green beans, and cream at 4, and a ketocal bottle at 8, supplementing with flavored water in between.  I like this plan very much for a few reasons: 1) He takes solid food better than liquid right now, and I don't have to spend all day trying to force feed him formula; 2) He used to get supper at 6ish, which made it difficult to go out during the evening.  Now we will be free to actually take him out if the mood so strikes; 3) The meds will be much easier to give than they were before.

Every morning and evening I used to measure out several liquid medications, putting them in an ounce or two of formula, fix his bottle, fix solid food, and proceed to feed him as much as possible.  Most often he took the meds no problem, but there were times that he was super stubborn and it would take a long time.  Now we will be giving 2 of his meds on a spoonful of sugarfree jello, and the rest will be dissolved into 2 mls or so of water and given by syringe.  Of course he doesn't like the taste, but he takes it like a champ, and it's all so much EASIER!  All this time I thought the diet would be so difficult to administer, but I'm finding that it will make my life better.  I like that!

The seizures have been very high.  Yesterday the count was around 178, and today 193.  This is not a sign that the diet will not work.  Many children go through this in the beginning because of all the changes going on at once.

Today he did a wonderful job of eating his very first ketogenic meal.  The bottle at 8 was again the most difficult, but he managed to only leave a little under an ounce this time.  His blood sugar has held steady in the 80s to low 90s which is terrific.  Thank God for that!  The urine check this afternoon revealed his has attained a state of ketosis!  Everything is going very well.  We should be home tomorrow!

Below are a couple pics of Levi in the swing at the playground.





Ketogenic Diet Day One

We arrived at the hospital at 8 am and went through the usual admitting.  We got Levi settled into a room, and were thrilled that he didn't need to be hooked up to monitors.  That meant we could take him to the cafeteria to eat with us, or go for walks, or what have you.  Definitely nice to have other options besides being stuck in one room!  I met with the dietitian, Jamie, and went over the meal plan.  Levi was to drink 3 five ounce bottles of ketocal today, with no solid food.  I learned how to test his urine with keto strips.  They took his blood sugar level to get a baseline, which was a finger stick, but he barely whimpered.  Such a good boy!  We met with the neurology team and discussed medications.  Since sugars are strictly limited on the diet, we had to switch four of his six meds to pill form, and in some cases the dosages had to be changed slightly.

Levi had his first bottle of ketocal at noon.  I have to admit I was nervous.  First, he doesn't typically eat much at lunchtime, and I didn't know how he would respond to a new formula.  He did amazing!  Either he liked it better than Nutren Jr, or he didn't really notice a difference.  He got through his usual three ounces and started to stall out.  He was making sucking motions but not drinking.  Remembering the early days when he was a newborn and the OT had to use a lot of chin and cheek support, I squeezed his little cheeks slightly, and lo and behold, he was drinking again!  What a relief!  He finished every drop of that bottle, and the four o clock bottle.  The eight o clock bottle was a completely different story.  The meds started trickling in from the pharmacy (once we got them all straightened out), but of course they were pills, and we had no food to sprinkle them on.  SO the nurses put them in a bit of water and squirted them in his mouth with a syringe.  I have to say, he did better than I would have!  Except for gagging once, he took all of them.  However, he just couldn't make it all the way through the eight o clock bottle.  He has never liked taking food late in the evening, and he was getting tired.  He did drink half of it.  By the time 10:00 rolled around we were both exhausted.  So I will speak with Jamie in the morning and see what she wants to do about it.  My guess is we will leave the meal plan as it is and see how he does tomorrow night.  Maybe he just has to get used to it.


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.

http://www.youtube.com/watch?v=Hm4yfZT_B78

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 www.charliefoundation.org or www.epilepsy.com.  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!