Wednesday, November 30, 2011

so far so good!

Ben has not had a tonic clonic seizure since yesterday morning!  :)

Before we went into the hospital the 2nd time, he was having these spells where his hands would tremble, his mouth would quiver (or chew), and his eyes would flutter.  We are seeing a lot of this activity again.  I would say that he's doing it as much (if not more than) he isn't.  Sometimes, it'll look more distinctly like a myoclonic jerk.  Other times it will just last for about 20 seconds or so.  If he's talking, his words will stop or stutter.  If he's holding something, he'll drop it.  Sometimes they even make him lose his balance.  It's very odd.

We are waiting on the results of the blood work today and still waiting on the flavors I purchased from Bickford.  UPS made a mistake and they ended up in Houston.  They were scanned in Dallas on the 23rd, but they've been all over the place since then.

I've been listening to this song again today.  It just fills my heart with His presence. 

We have so much to be thankful for. 

The pile of cards that have been sent to us over the past few months still bring encouragement each time we read them.

Our school and church families have been working on a big project for us and we received a major financial blessing yesterday.  We are overwhelmed by the love and support of the community and our friends and family.  There just aren't enough words to express our gratitude.

Tuesday, November 29, 2011

a rough start

Ben had a rough night and this morning is starting out the same. 

But he ate a fabulous breakfast!  Since we lowered his ratio, he was able to have a grape with his egg and sausage mixture.  I noticed that his calories are slightly below the mark for breakfast, so I added in a tiny part that oopsie roll with cinnamon butter on it. 

We are hoping that the flavors I ordered from Bickford will come in today.  I can experiment with "pancakes" and more snacks.

Thank you for keeping us in prayer.

Monday, November 28, 2011

A better day :)

Today started with 2 tonic clonic seizures and a few myoclonic ones.  But as the day went on, he didn't have any more tonic clonic ones!  He really fell asleep today during his nap and he didn't have one.  :)  We noticed a lot of trembling in his hands today, so we'll need to keep an eye on that.

I've been cooking up a storm in preparation to go back to school.  I can freeze the pizza so I started by making 5 pizzas.  I got the crust done and then when I was measuring out the sauce I realized that I messed something up because I didn't have enough.  I think I forgot to add the oil to the sauce, but everything has to be so precise, I couldn't just go back and 'wing it'.  I couldn't even save the crusts because I couldn't get the sauce off completely.  I couldn't take a chance.  So I had to throw it all out.  :(  That was hard.

But I just started over and I now have 5 pizzas in the freezer.  It took me about an hour and a half to make all 5, but I think I'll get faster with time.  I also experimented with some snacks.  Who knew you could do so much with whipped egg whites?  I made some sort of bread like substance using the whipped egg whites, egg yolk, cream cheese and splenda.  It's an acquired taste, but Ben has to eat his portion with butter and I can add a bit of cinnamon to it.  He enjoyed his bite.

I also made some "sugar" cookies using coconut oil, coconut flour, eggs, and a bit of splenda.  He LOVED those.  They are about the size of a Nilla wafer and he can have one as a snack. 

Today we are praising God:
  • The dietitian told me that the cream we are using is 40%!  If I was better at math and not so overwhelmed, I probably could have figured that out on my own, but yeah!
  • We decreased his ratio to 3.5:1 so that means he can basically have 1 grape with each meal and he loved that today.
  • I'm learning about new snack options that will travel well to his Nana's house when we go back to school next week.
  • We will get his blood levels checked tomorrow to make sure we are on track.
  • He only had 2 tonic clonic seizures today!  He even got to play outside for a bit with Leeon.  :)
We are praying that:
  • His hands will not tremble tomorrow.
  • He will sleep through the night seizure free.
  • I will continue to find things to feed him that he will enjoy.
  • That we will have the wisdom to know what to do on each step of this journey.

Sunday, November 27, 2011

Reality of this diet

Ben only had one seizure during the night last night and he didn't have one upon waking this morning.  :)  :)He's napping right now so I'm hoping that he will make it through nap time without one as well.

We've been doing this diet at home for about 9 days now.  Here are some of the realities of this diet:
  • He consumes a lot of oil, butter, and cream.  In the past 9 days, I have gone through one half of a bottle of canola oil, one half of a bottle of olive oil, 2 1/2 quarts of heavy whipping cream, and about 3 sticks of butter - all for Ben.
  • There are hidden carbohydrates EVERYWHERE.  We have had to change his toothpaste.  He can't chew sugar free gum because it has a teeny tiny bit of carbs.  I have to grate my own parmesan cheese because the grated stuff has more carbs in it.  He hasn't even eaten a piece of fruit in days.
  • He is allowed one free food a day from this list: 
    • 25 grams of lettuce (that's a lot)
    • 1 macademia nut
    • 1 walnut
    • 3 black olives
    • or 1 pecan
  • He's allowed 2 optional snacks of 50 calories per day, but they still have to maintain the 4:1 ratio.  I wanted to incorporate fruit since he's not getting any with his meals, so here is a picture of a sample snack.  For a fruit snack he gets 1/2 of a grape and about 1/2 ounce of cream.  There are a few snacks listed in the cookbook that I will have to experiment with.  This is just an example of what the hospital sent me home with.
  • It is not nutritionally whole.  He now takes 2 drops of Vitamin D, a Centrum complete vitamin, a Calcium supplement, and a prescription of Phosphorous each day.  He has to have the adult version of these vitamins because the kid versions are loaded with carbs.  It's a good thing he can swallow pills!
  • We are officially in the fine tuning phase.  We need to figure out why it's not working so well right now.  It may be that he has too many calories.  The body needs to think it's starving and can't hold anything in reserves.  It could be that his ratio is too high.  He may need to go back on the drug Topamax and we'd have to wean later.  He may be drinking too much fluid or not enough.  I'm hoping that tomorrow we will begin to get some direction on what the problem may be.
  • It is a miracle for so many kids.  I found this video on youtube of Charlie speaking before numerous neurologists, epileptologists, dietitians, and the like.  Charlie is the reason for The Charlie Foundation.  His story is also told in a movie called, First Do No Harm.  I haven't seen it, but according to the literature I've read, the movie depicts the diet working much faster for him than it did in reality.  But the end result is that it worked.  Here is he talking a few years ago:  (sorry my computer isn't cooperating today, you'll have to push control while clicking on the link.)
My favorite words are these, "My name is Charlie and I used to have epilepsy..."  His journey is so different from Ben's, but I pray that the end result will be the same.

Saturday, November 26, 2011

I'm thankful for the internet!

Thank you for praying this morning.  Ben has not had another seizure today!  He just had another one after I got two paragraphs written.

I'm so thankful for the internet because I belong to a 'support group' for moms of Doose kids.  I was able to share my frustrations last night and received numerous responses with ideas and support.  These are moms who are new like me and some who have been on this road for numerous years.  They gave me a lot of insight as well as questions to ask the dietitian and our neurologist.

I'm going to ask for some blood work to be done on Monday to see if we can get a more accurate reading of his ketone levels.  From everything I've read, getting the levels from urine samples is the most cost effective and convenient way - but not the most accurate.  Running a lab is the most accurate way we have, but obviously we can't go and get a blood draw everyday.  I think this will help us discover if perhaps his body is too ketotic.

I'm typing this and I don't really even know what it all means.  The hard part of this journey is that each child is different.  They each make their own path and we have to become detectives trying to figure out how everything is working together. 

Talking with the other moms today has given me hope and insight.  I'm anxious for Monday to come so that we can get in touch with Dr. Perry and our dietitian.  We just need to keep holding on.

I love the scripture that's on the side bar because it says,

"Let the beloved of the Lord
rest secure in Him
for He shields him all day long
and the one the Lord loves rests on His shoulders." 

It makes me angry sometimes when I think about how the seizures strike him in his sleep as he is so defenseless.  But it gives me great peace knowing that God has him.  Ben can rest secure in Him all day and all night and that means we can too.

Thank you for continuing to pray.

feeling desperate again

The seizures won't stop.

We've added back another medication.
We've made sure we are measuring every meal to the exact gram (not even a 1/10th over or under).
We are making sure he is eating it all - even drinking the leftover butter from the tiny bit of popcorn he got last night.

But they won't stop - we just had to give Diastat as a rescue med a few minutes ago.

The seizures are hard enough to deal with, but then when he wakes up I feel like I am punishing him by not giving him enough food and forcing him to eat things he hates.  The diet is so hard that the only motivation to keep going is the hope of becoming seizure free.

Please pray that God will help these seizures stop and for encouragement for us.  We need wisdom and peace; Ben needs a complete healing.

Friday, November 25, 2011

more of the same

Things are pretty much the same...Ben had only 1 tonic clonic seizure yesterday, but has had 2 today.  We've added clonazapam back into his medicine routine.  It doesn't seem to be...

and just like that another seizure.  He was napping on the couch and had another long tonic clonic seizure.  That makes 3 today.

The clonazapam doesn't seem to be helping much, but sometimes these things take time.  We are growing more concerned about his speech.  With all of these seizures, it's becoming more difficult to understand what he is saying.  We've seen it clear up (when we had those seizure free days while we are trying clobazam) before, and we are praying that the seizures aren't causing any permanent damage.

We are still thanking God that Ben is eating better each day and we are praying that the seizures will stop.

Thursday, November 24, 2011

Happy Thanksgiving!

Leeon and I were looking over all the notes and cards we've received from friends and family these past few weeks and we have so much to be thankful for!

Thank you for all of your love and support. 

We are truly thankful for you.

Wednesday, November 23, 2011

A successful dinner!

We had taco meat for dinner and Ben loved it! I was a little nervous about trying this meal because this was one of his favorite meals before starting the diet. 

This time it was loaded with butter and oil, but he ate it up!  He wanted more, but we were unable to let him have any.  He even drank his cream without a problem! 

So, we officially (and finally) have 3 meals.  He will tolerate the eggs and sausage, loves the pizza and taco meat! 

We are thrilled.  :)

increased seizure activity

Ben ended up having another tonic clonic seizure at 2:00am and 6:00 am.  Since then he's had 2 more and a myolconic jerk.  After one of the seizures today, he cried for a long time.  I'm almost wondering if it was some kind of unusual seizure because his hands were stiff and clasped for the duration of his crying spell.  I managed to get him to tell me that his head was hurting.  But because of the diet, we can't give him children's tylenol anymore.  We have to give him 1/2 of an adult regular strength so Leeon ran to get some for him.  After that he was ok.  We went to lay him down for his nap and he had another one.  This time he fell asleep quickly.

I know that we are in this for the long haul.  We've committed to this diet for 3 months and we can't look at isolated events like these past 2 days to determine whether the diet is working or not.  It's just that the diet is hard enough in itself - the increased seizure activity only makes it harder on his body and it takes away some of the motivation to eat the foods. 

Ben brings such encouragement to me and he doesn't even realize it.  Today we went over to his Nana's house to play on her swings and as soon as we turned on the radio, his absolute favorite song came one.  It is Blessed be the Name of the Lord.  He gasped and said, "Turn it up, turn it up!"  If you haven't listened to it, I've posted a link on the sidebar.  The lyrics talk about praising God in good times and in bad times.  Even in loss we still have so much to be thankful for.  Ben has lost a lot, but he is still showing us how to live with a grateful heart. 
We are thanking God:
  1. That Ben is eating better (although I will have to show pictures of the 'chicken nugget' creation I attempted last night)
  2. he chose to drank the cream without diet, caffeine free soda this morning
  3. he wants to play outside and get involved despite not feeling 100% yet
  4. God's presence has been a "ever present help in times of trouble"
We are praying:
  1. that the seizures will stop
  2. that we will be able to stay focused on the end goal and not be lost in the moment by moment struggle
Thank you for praying and loving us through.  I'm so glad that we have a God that holds on us to even in the darkest of winters...

Tuesday, November 22, 2011

a rough day

Ben just had his fourth tonic clonic seizure today. 

Please pray that he won't have any more tonight.

Sunday, November 20, 2011

Ben's hungry

Today has been a little harder.

Ben has cried and complained of hunger all day.  His ketones are lower than they've been since we started.  That means that we are doing something wrong.

I'm going to talk with the dietitian tomorrow to see what we should do.

It's hard to see the light at the end of the tunnel in all of this.  In some ways it feels like we've exchanged one crazy for another.  We are seizure free again today (yeah!), but he's hungry, lethargic, and irritable.  We will get through this.  One step at a time.  In 2 weeks it'll look much better - I just know it!

Our pastor read Psalm 121 with us in the hospital.  I have to keep focused on His promises:

"I look up to the hills, but where does my help come from? 
My help comes from the Lord, who made heaven and earth. 
He will not let you be defeated. 
He who guards you never sleeps. 
The Lord guards you. 
The Lord is the shade that protects you from the sun. 
The sun cannot hurt you during the day, and the moon cannot hurt you at night. 
The Lord will protect you from all dangers; he will guard your life. 
The Lord will guard you as you come and go, both now and forever."

Saturday, November 19, 2011

first day home

It's so good to be home!

This morning, Ben was starving so I warmed a pizza that Angie and I made last night.  Lunch didn't go over so well because of the amount of oil and butter that was on the chicken.  I tried to water down the cream and add liquid splenda to make it more like milk, but that didn't work.  For dinner tonight, he had peanuts, pepperoni with oil on it and we hid some of the cream in a diet root beer.  He drank it!  :)  It wasn't as much as he was suppossed to drink, but it was the most ever!  I think if we go a little at a time, he won't notice it so much. 

Tonight we are rejoicing for victories:
  1. Ben just ate a great meal!
  2. He hasn't had a seizure in 2 days!
  3. I found a cookbook that I will get tomorrow to help with meal planning. (Thank you Brandy for picking it up for me!)  :)
  4. Our dietitian put me in touch with another mom who struggled with keto at first, but is now 2 years into it and has some great tips.
  5. We went to the store today without a helmet!
Please continue to pray:
  1. That Ben will not have another seizure.
  2. That his strength will increase.  He took 2 naps today and fell asleep on the way to and from Cedar Hill.
  3. That we will find ways to get the fat into him that is more palatable.
  4. That Leeon and I will have strength - it's hard to listen to him cry out in hunger but be unable to give him what he wants. 
I'm so thankful for a scripture that my friend, Lisa, posted on her facebook page the other day.  It's a great reminder about God's faithfulness. 

"Lord, remember my suffering and my misery, my sorrow and trouble.  Please remember me and think about me.  But I have hope when I think of this:  The Lord's love never ends; his mercies never stop.  They are new every morning; Lord, your loyalty is great.  I say to myself, "The Lord is mine, so I hope in him.'"

Friday, November 18, 2011

Ketogenic Diet Day 5

Today started out rough and was very overwhelming at times; there were many tears shed.  This is how he looked while trying to eat breakfast.  He eventually fell asleep in the chair and we moved him back to his bed and he slept for 2 hours.

We tried to feed him at lunch, but he refused all but the 5 pieces of pear.  His blood sugar was low so we were happy that he ate the little that he did.  Then we just waited to get discharged.  He was ready to go home!

Getting a welcome hug from his little cousin!
I spent about 1 1/2 hours in various stores trying to find all of the necessary ingredients for the next few meals.  Each time I turned the car on, there was a song that just jumped up to grab me!  One time it was a song talking about not being strong enough to handle a situation but knowing that God would be there to help.  Another was a song about what if these trials we face are really blessings in disguise.  The next time it was a song about giving our worries to the Lord.  And then the last time I got in the car to head home, I turned the radio on and it was a sermon and the man was talking about healing!  I don't even know all that he said, but I just sat there for a moment and thanked God for speaking to me when I was feeling completely overwhelmed by the challenge of the day.

My best friend, Angie came over to help me and she was a life saver!  Together we measured and weighed and made a giant mess to create this masterpiece:

This is a pizza using a power called KetoCal.  This is an entire 3:1 ratio meal.  This means that each bite is perfectly balanced as part of the ratio.  The other meals we have been using at the hospital are also 3:1 ratios, but you have to eat the ENTIRE meal in order to stay in ratio.  So this afternoon when he only ate the few pears, he did not stay in ratio.  I thought this would be better because we wouldn't have to try to get him to eat an entire meal, as long as he ate a bite he would still be in ratio.  Now of course, he would need to eat the entire thing to get his necessary caloric intake, but at least we wouldn't have to battle each bite.

The sauce was actually very tasty, the crust had a strange consistency and an odd taste, but he LOVED it!  He ate the entire thing and wanted more!  I couldn't give him more, but my baby ate an entire meal and enjoyed it!  :)

So tomorrow the challenge begins.  The challenge to find meals that will work.  I also need to find a system that works to make it as efficient as possible.  One day I hope to be as good as this mom:

Thank you for praying!  If Ben will start to enjoy the cream and butter, we will have many more options open to us for meals. 

Tomorrow we will wake up in our own beds! That right there is a blessing in itself. :)

going home

I'm a little frustrated right now with this whole process.

I discovered a meal that may be more palatable to Ben - a pizza or pancakes using special ingredients, etc.  I asked about trying one of those meals, but they told me that they don't really have the capability for that here in the hospital.  Those are meals that we can try at home.  I told them that we'd like to go home soon then.  I still have to get to the store to find the what I need and then also make the items, so I'm hoping that they will let us get going soon.

We talked with the epilepsy educator and asked her how many patients were Ben's age when they started and she said "Not too many."  She said that they mostly deal with babies (who get a formula like enfamil) or tube fed kids.  So I feel a little like they don't really know what to do either.  Our plan is to try one more meal.  We are going to offer it to him and let him be.  And then hopefully get to go home very soon.  Maybe it'll be easier to figure this out at home.

he's not eating

I'm sure you've all been there - when your child won't eat whats for dinner. 

So you try humor and flying airplanes. 
You try rationale:  "It'll make you stronger!  Carrots help you see in the dark!"
You try being tough:  "You will sit there until you eat your dinner."
You may even beg or make a deal...

This is what we are doing with every meal and we can't really find something that is working.

He refused breakfast so we are going to have to have him hold off until lunch time.  If he's hungry enough, the food will look appetizing, well that's we are hoping for.  He fell asleep in the chair while refusing the breakfast so we've moved him to the bed and he's still out cold.  It's hard to see him hungry and tired but not be able to offer him something that would help.  We have to stay focused on the bigger picture - that the diet may stop the seizures. 

Please pray that he will eat.  Pray that God will give Leeon and I the strength to do the hard things.  Please pray that the dietitian will help us develop meals that will work.  and pray that the cream will stop gagging him - it is by far the easiest way to get the fat into the diet.

Thursday, November 17, 2011

Ketogenic Diet Day 4

Ben's blood sugar dropped again this morning, so we had to give him a sip of apple juice and then test again.  Before he woke up, he had another grand mal (tonic clonic) seizure.

He ate another pepperoni meal for breakfast and I underestimated how much food it was in my last entry.  It's actually about 16 pepperonis and about 9 peanuts and 15 ml of cream and 5 mls of oil which we pour over the pepperoni.  He ate it, but needed a little more coaxing to get it down, but he did it!  This morning was his first successful breakfast experience.

 Lunch was a repeat of breakfast as the dietitian was busy trying to get some other recipes together.  Later on I was able to work with her to create some more meals.  This is going to take some time.  When I see the recipe on paper, it looks fine.  But then when I go to create it and actually see how much oil and butter he needs to consume, it's frustrating.  Tonight's dinner had some chicken swimming in oil and butter and pepperoni that was swimming in the oil as well.  It was not very palatable for him and he didn't consume all of the left over oil in the bottom of the dish of pepperoni or chicken.  This will be a problem as we go along - it will make his ratio off which over time would knock him out of ketosis.  But we will count tonight as a success because he tried his very best and he didn't throw up. 

 In fact, today was the first day that he ate all 3 meals.  This is great news.  :)  I'm just at a loss for how to get the fat into the diet.  It's a lot of fat and all the yummy carbs we usually enjoy our fats on are gone (like bread, crackers, potatoes, etc).  We are going to try whipping the cream in the morning to see if we can get him to enjoy the cream more.  If he will consume more cream, we can cut back on the oil and butter. 

We met with the doctor and he decided that we needed to be here until tomorrow.  We need his blood sugars to stabilize and for him to tolerate the diet before we can go home.  Today was a huge step in the right direction as he ate all 3 meals.  He told us that in about a week, we will need to increase the ratio to 3.5:1.  This means adding even more fat into the diet.

Ben asked a few minutes ago, "When we go home can we go to Taco Bonos (Bueno)?"  When we told him that we won't be going there again for a very long time, he cried.  I think going home will be a big adjustment as he learns that this eating plan doesn't only happen at the hospital.

We are thanking God:
  1. that Ben ate all 3 meals and kept them down
  2. he was able to go for a walk outside today
  3. for a patient dietitian
  4. for support from family and friends - your notes, comments, and prayers really keep us going
We are praying specifically:
  1. that Ben will acquire a love for whipping cream
  2. that I will be able to find the right combination of foods that he will like and that fit into the ratio
  3. that Leeon and I will be able to help Ben eat.  When he is refusing, we need ideas that will make it fun.  We also need to know at what point do we use tough love and have him wait until the next meal and when do we keep pushing.
  4. that we will have peace.  We know this is the right thing, but it's difficult.
Here is a picture of Ben outside today on our walk.

Thank you for being so encouraging.  We are going to beat this thing!

Wednesday, November 16, 2011

Keto Diet Day 3

As you've read in previous entries, today has been challenging.

BUT, it's not ending that way.  :)

Ben just ate a very successful 3:1 ratio meal.  It included about 12 pepperoni slices in canola oil, 15 mls of whipping cream, and 6 peanuts.  He seemed to enjoy it and the amount of cream was just enough - he drank it with a little coaxing and he didn't gag.  He will repeat this same meal again for breakfast and then we'll go from there.

We are thanking God for:
  1. a successful meal and a little burst of energy in Ben
  2. a financial blessing
  3. love and support of friends and family
  4. His peace 
We are praying:
  1. that breakfast will be as successful as dinner was tonight
  2. that Ben's blood sugar will not drop
  3. that we will discover more food combinations that will interest Ben
  4. that today's seizure will have been his last
Thanks for joining us on this journey.

this is hard...

Ben has been asleep - out cold - most of the day.

The little bit that he ate for breakfast, he didn't keep down.

Everyone keeps telling us that it's because his body is having to learn a new way to use energy, but it's still hard to watch.  We are keeping a close watch on his blood sugar level.  They said he'll probably hang out at about 60-70 while on the diet.  It dipped to 45 in the middle of the night and we gave him some apple juice (20 mls) and it was better.  We just repeated the process a few minutes ago, but he's not perking up.  He's completely out.

 I keep thinking of the song I posted last night...these words are a good reminder of His faithfulness.

If my heart is overwhelmed and I cannot hear Your voice
I’ll hold on to what is true though I cannot see
If the storms of life they come and the road ahead gets steep
I will lift these hands in faith
I will believe

I remind myself of all that You’ve done
And the life I have because Your Son

Love came down and rescued me
Love came down and set me free
I am Yours I am forever Yours
Mountain high or valley low
I sing out remind my soul
That I am Yours I am forever Yours

Please continue to pray that Ben will respond better and that Leeon and I will have peace and strength.

a seizure

Ben just had a 2 1/2 minute tonic clonic seizure.  :(

a new ratio

Ben is having a hard time this morning.  He vomited during breakfast again.  We just spoke with the doctor and we are going to try to back up and change his ratio to 3:1.  This will allow for less fat and hopefully it'll be more palatable.  We will meet with the nutritionist later this afternoon to fix the meals and try some other options, and get some questions answered.

Thank you for praying for his tummy and for his spirits.  We are going to take him downstairs to the playroom for a distraction and reward for drinking some of his meal replacement.  He is really trying hard.

Tuesday, November 15, 2011

Ketogenic Diet Day 2

This morning started out kind of rough.  For breakfast he was served some hot dog pieces, 2 tsp of peanut butter, and the cream mixture.  He was only really interested in the peanut butter.  We tried to keep going with the cream solution, but he vomited.

The rest of the morning, he spent chilling out watching TV.  He was very lethargic and rested for most of the afternoon as well.

Leeon and I were able to meet with the nutritionist and learn more about the diet.  We were even able to help prepare a few meals.  That was interesting.  Measuring things to the gram - wow.  I never knew that a drop of whipping cream could make a difference, but it does.

After his late afternoon lunch, he was able to get the leads off his head from the EEG.  This is always the best moment for him.  Then we were allowed to roam the hospital and made it to the indoor and outdoor playgrounds.  It was thrilling to watch him running around playing WITHOUT his helmet!  We haven't had any seizure activity since we've been here!!!!  I can hardly believe those words.  We are holding our breathe believing that this is just the beginning, but for months we've been on this rollercoaster that just won't stop.  Part of me hesitates to celebrate because it will be so disappointing later if they return; but the reality is that I will be disappointed regardless, so let's celebrate the victory!

Ben just finished dinner.  It was difficult because he wanted chick-fil-A nuggets.  He cried and cried when I gave him his options.  I reminded him why we are doing this and we talked about how fun it was to play without the helmet tonight.  We talked about how good it feels when the seizures stay away and he eventually complied.

Tonight's dinner was 3 thin slices of a hot dog, 10 g and peanut butter and 10 g of butter melted together, and 30 ml's of cream.  He wasn't thrilled about any of it, but with lots of praise and humor he eventually ate it all. 

We are testing his urine each time he uses the restroom and he is officially in ketosis.  The level is a little lower than they'd like, but it's official.  We are also testing his blood sugar twice a day to make sure he doesn't get too low.  His body is working hard to learn a new way to metabolize food.

We are thanking God that:
  1. Ben only vomited once.
  2. He has been willing to try the cream again despite the fact that it made him sick.
  3. He's been seizure free and God has been answering prayers for healing.
  4. Getting the leads off means that we can turn the lights off tonight as we sleep and we don't have to be videotaped 24/7!  :)
  5. Friends and family are holding us up in prayer and helping in so many ways.
We are continuing to pray:
  1. That this is only the beginning of good things to come.
  2. That the high amount of fat in this diet will become easier on his tummy as well as more palatable.
  3. That Ben will be encouraged - I can't imagine what it feels like to him now.
  4. That Leeon and I can continue to encourage Ben and understand all of this information.
My brother shared this song with me right before we came into the hospital and it's perfect.  When this road gets steep, I have to stop and think about how His love comes down to rescue us.  He is right here with us.

Monday, November 14, 2011

Ketogenic Diet Day 1

When we got here, they weren't quite ready for us, so they sent us to go get one last meal in the cafeteria.  So, Chick-fil-A, it was!  Ben gobbled up his last taste of chicken nuggets for a while.

After getting hooked up to the Video EEG, they performed the routine check.  This includes having him blow continuously on a pinwheel for 3 minutes straight, having a light test done, and then taking a nap.  He was trying so hard during the pinwheel part of the test, he said, "Oh my breathe!"  But he did great!

Around 7:00 pm, they brought him his first meal.  I'm still trying to understand it all, but it is 1/3 strength and calories.  They have to slowly build up to full strength so that his body will tolerate it.  So this particular meal included 3 pieces of diced pears, 2 slivers of chicken, and a frozen mixture of heavy whipping cream, olive oil, and a few granuals of splenda (for a total of about 2 oz).

He did it!  He had a little bit of a hard time with the cream, but I think we'll get there. 

Soon after, he was "starving", so they brought him another meal at about 10:00 pm. This meal was about 1 tsp. of peanut butter (with real butter mixed in  we tried this on day 2 and it didn't go over too well), a small portion of a hot dog, and 40 ml of heavy whipping cream.

We are taking things one moment at a time and trying to learn as much as we can.  Thank you for praying, we've had peaceful start to this diet.  There's a lot of information being thrown at us, but we'll get it.  Your love, support, and prayers have made today easier...thank you!

Saturday, November 12, 2011

Information about the Ketogenic Diet

Fred Vogelstein's son, Sam, is a 9 year old struggling with epilepsy.  He has written an article about the ketogenic diet for the New York Times.  You can read about it here.  It's lengthy but it gives a lot of information about the diet, the side effects, the calculations needed, as well as the results.  It's a good read if you are interested.

I've read that if the children like the whipping cream, they won't have to consume quite as much butter and mayonnaise.  I'm really hoping that Ben will enjoy the cream.  Please pray with us that as we introduce new foods (he's already a very picky eater), he'll find new things that he likes. 

I'm not sure what to expect on Monday.  I feel a little like I'm on a see-saw - one moment I'm full of hope thinking, "We've got this!  We can do it!"  And then the next moment, I'm overwhelmed at the challenge that lays ahead of us. 

But one thing I know for sure is that we have the best support around us!  Our friends and family have been beyond amazing.  Ben is one loved little boy - that is for sure!  We also have a wonderful God who has promised to never leave us and we can continue to rest secure in Him.

Tuesday, November 8, 2011

The new plan

Since July, we've had lots of 'plans'.  With each new medication there was a plan.  The plans usually involved a slow introduction and slow wean to the new and old medications.  The plans were set to take place over the period of a few weeks.  With each hospitalization, we've had a plan.  We would plan on things getting better when we returned home.  We would plan on the medication working once it was at full dosage.

But plans don't always work out.

Each time we introduced a new med, we had to speed up the process because it wasn't working - we increased every 3 days instead of every 7.  We had to abruptly stop one medication because we were concerned it was causing kidney stones.  In short, nothing has gone as planned since this whole thing started.

So we shouldn't be very surprised that our plan to go into the hospital on Dec. 13th isn't working out either. 

Due to the increase in seizures, Ben will be admitted on Monday, Nov. 14th.  When the nurse called to tell us, I was taken aback.  The reality hit me for a moment that it's happening now.  We are really doing this.

But now that it's settled in a bit, I feel really good about it.  The more I read, the more optimistic I become in hopes that this may actually work!  I've read that there isn't really a 'honeymoon phase' for the diet.  We've experienced that before and it's frustrating.  I've also read that whatever seizure control we gain while on the diet for the next 2-3 years, we will keep when he is weaned off of the diet.  I'm also optimistic that we will drop one of the three meds he is currently taking almost immediately (kidney stones are a known side effect to both this particular drug and the diet so they aren't often used at the same time).  Ben will be thrilled about that!

When it's time to wake Ben up, my mind instantly thinks about what the day will hold for him.  "Will he have a tonic clonic seizure?  Will he have a lot of drops this morning?  Will he injure himself today?  Will he be ok?"  I can't wait for the day that I can think things like, "What will he learn today?  Who will he play with?  Will he have fun?"  I know those days will return and I'm praying that the diet will help them come soon.

We are motivated and optimistic about the benefits of the diet, but also a little uncertain about what the next few weeks will look like for us.  I know that the week we are in the hospital will be very difficult for Ben.  He will be struggling physically as well as psychologically.  We will need to be strong for him.

We need prayers in these specific areas:
  1. that the diet will work
  2. for strength and peace for Ben
  3. that Ben will not suffer from vomitting and diarrhea those first few days at the hospital
  4. that Ben will be willing to eat the food
  5. that Leeon and I will have the strength to smile and be his cheerleaders even when it's hard
We are thanking God:
  1. the book I ordered on the diet arrived today so I can really begin to prepare
  2. a friend offered to share her "magic bullet" mixer with us - other keto mom's say this tool is a must have
  3. for a financial blessing - an answer to a specific prayer to the exact dollar amount (God is so good!)
  4. Ben is an amazing kid - the whole time I'm writing this he is playing his drums and his guitar to some of the music listed on the side bar.  He told his nana today, "I don't need to take my pills - God already healed me."  His faith and optimism is something to be admired.
  5. for the love and support by so many friends and family

The new plan is to get on this diet and watch the miracle unfold before our eyes. 

Until then we will remember,

"'For I know the plans I have for you', says the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'"  Jeremiah 29:11

Friday, November 4, 2011

The helmet

It looks like Ben will have to start wearing the helmet again.

Ben's had over 30 myoclonic and drop seizures so far today.  They've returned a little different.  There is still a distinct jerk, but they have lasted longer, his arms will stiffen, and his mouth will continue a chewing motion for about 15-20 seconds.  Then when it finally stops, he collapses as if he's completly exhausted.  Then a few minutes later he'll pop back up ready to go.

Speaking of the helmet, we got the bill for it today.  I called the hospital to talk to them and they ran through the details and said that they had "written off $75" (I'm not sure what that means, but we'll take it!)  I continued to ask her a few more questions and she told me how long I had to pay it off and then said, "But I can offer you a 25% discount".  I was completly shocked and said, "Yes, please!"  We are very thankful for this blessing.  Now I should call the hospital to see if they can give us a discount or write off some of the amount from our last two hospital stays!  :)

We have an air mattress that I set up in the living room for Ben to play on tonight and he had a drop seizure while kneeling on it.  He flipped over and landed on his back.  As soon as it stopped he said, "Well at least I was on the bed!"  He has such a positive attitude!

We are praying specifically that the seizures will not continue to increase. 

We are praising God for a financial blessing and for giving us Ben - he is our joy!

Thursday, November 3, 2011

Baby monitors, pull ups, and child locks...

Ben had a tonic clonic (grand mal) seizure this morning just as we were about to walk out the door.  It lasted for about 2 1/2 minutes.  He had his usual shaking and stopped breathing for about half that time.  Then it seemed to slow down and he started to moan and talk as he sometimes does.  But this time it was different.  His moaning became very loud and his face was distressed.  He normally has no facial expressions during the seizure, but this time it was clear that he was feeling pain or fear - but maybe he wasn't.  Maybe this time the seizure just triggered something new that we haven't seen before.  Either way, it was difficult to watch.

Later on this morning, he had one myoclonic jerk.  This is when his arms will jerk up towards his head and he will often fall straight backwards.  This is the first one he's had in several days - almost 2 weeks in fact.  We are hoping not to see an increase in these because we'll have to put the helmet back on for his protection. 

Thankfully, he didn't have a seizure during his nap today - that's a first for the whole week.

Dr. Perry's office called today to give us a date for the ketogenic diet.  We will go into the hospital on Dec. 13 - 16th.  They told me that in preparation for the diet, I should put child locks on the cabinets, pantry, and refrigerator.  This is because he won't have free access to food once the diet begins.  It will be imperative that he doesn't cheat.  He will not be allowed to snack or graze so they've asked me to limit his snacks in between meals and start cutting out unneccesary carbs. 

This diet is a medical diet that uses a 4:1 ratio for calculating food intake.  It is highly calculated - to the gram.  Everything will need to have 4 times as many fat grams as carb or protein.  It is 80% of the normal caloric intake recommended.  No one knows why it works, but in 10% of patients it will stop the seizures completly.  In about 30% of the patients, there will be a big improvement - some are even able to get off some of the medications.  (We will probably get off topamax because it is known to cause kidney stones and the diet is prone to developing those as well, so they will probably take us off that one altogether).

In the hospital they told us that a sample meal would be 4 grams of chicken, 2 grams of applesauce, 3 grams of ranch dressing, and 8 grams of butter.  When you think that a paperclip is about 1 gram, that's not a lot of food.

This diet is not without it's complications.  We will have to test his blood sugar regularly.  We will have to test his urine daily to make sure he remains in ketosis.  It will not give him enough of daily vitamins or nutrients, so we will have to use a vitamin supplement.  He will also have to use something to help his stomach deal with all the fats.  They told me in our last stay that he would probably not grow while on the diet.  We have to make a minimum 3 month committment, but she told me today to plan on being on the diet for 2-3 years.

So this brings me to the title of my monitors, pull ups, and child locks...

When Ben goes to sleep, we start him off in his own bed, but we have to use a baby monitor to listen for seizures.  We've had to start using pull ups because the seizures and meds are causing him to have accidents every night.  And now we have to reinstall baby locks to 'child proof' our kitchen.

It's hard at times to see my child moving backwards.  I never imagined we'd have to budget for pull ups again, but this has become our reality.

There are a lot of emotions right now, so this post may not even make sense.  But there are a few things that I know for sure:
  1. Kids are more resilent than we often give them credit for.  The things I will cry over as we start this phase of the journey (like no Christmas cookies) may not even bother Ben.
  2. I've read numerous success stories on the internet about this diet.  I've read numerous times, "The diet is not any harder than watching your child have seizures."
  3. The timing is probably a blessing - Leeon and I will have the Christmas break to learn how to adjust to a completely new lifestyle.
  4. We only have to think of this as a 3 month trial.  If it works, we'll want to continue it.  If it doesn't, then we can stop.  I can't focus on the 2-3 year window right now.
  5. God has already gone before us to prepare the way.  He will be with us each step of the way.
  6. Ben's disposition will help him - he is just like his daddy!  :)
  7. Our families and friends will be right there with us - helping as needed.

It feels good to have a date.  I feel like I can focus better at school and at home knowing when this will start.  My prayer is that while we wait for December 13th, the seizures will not spiral out of control. 

Thank you for continuing to pray for Ben's healing and for wisdom and peace for me and Leeon.

Tuesday, November 1, 2011

I Stay Amazed

I've been focusing on the words of this song today. 

"Forever You will stand...Your kingdom has no end...You never cease to amaze..."

When I focus on all that God has already done for us and how He's walking alongside us on this journey - I can't help but be amazed. When I stay focused on Him, I'm able to deal with the uncertainty of the future much better.

Ben had another seizure last night and again during his nap.  Both times we administered clonazapam and that prevented any recurrences.  It's just giving him clonazapam feels like we are taking a step backwards.  We had already weaned off that med and now we are having to use it again. But we still haven't seen the myoclnic or drop seizures return so that feels like a big step forward.

We haven't heard from the doctor yet about an appointment to start the ketogenic diet, but hopefully tomorrow we'll be able to get some information about it.

Thank you for continuing to pray. Music really ministers to my heart, so if there's a particular song that has helped you through a challenging time - please share it. I'd love to hear it.