Monday, February 27, 2012

cheese crackers...keto style

I've been playing with a new recipe the past few days trying to get it to consistently work. 

It's not going so well.

Tonight, as I was frustrated, Ben asked me what was wrong and I told him that the crackers weren't working too well.  He said, "That's ok mom.  I still love you."


Here's a look at this recipe:

18 grams of ground macadamia nuts
4.5 grams of shredded cheddar cheese
3 grams egg white
pinch of salt

The whole recipe contains 152 calories at a 4:1 ratio.  So I have to divide the total recipe into 3 snacks to meet Ben's requirement.  Then I can lower the ratio by adding a tiny bit of fruit.  However I can only add 3 grams of a 15% fruit, like grapes.  But one typical green grape weighs about 9 grams so it's not much!

The cookbook portrays these crackers as little darling crunchy bits of goodness...

Simply mix the ingredients together! 

Drop 'dime' size amounts onto parchment paper.  They expand a lot while cooking - these started as dime sized.

Look at the holes!  I couldn't even get it off the paper without it crumbling apart.

So I tried again in the silicone mini cupcake holder.

They fared much better this time and Ben really enjoyed the flavor!  They were still very delicate.  They would fall apart in your hands if you handled them too much.  Not very cracker like.

Tonight I tried again and....
crumbly...I couldn't even get them out of the pan.

So I tried again but this time tried to make only 3 big ones instead.  These were really bad!

I made one last attempt using these adorable silicone cups that my friend Angie bought me.

They seemed to hold together better but they are very soggy.  :(

I went back to the ketogenic calculator to see what else I could figure and it turns out that he can have 6 grams of macadamia nuts (about 4 halves) and 3 grams of cheese (a tiny mouse sized nibble).  Maybe he'll just like that better.  Especially since these crackers taste like the nuts mostly anyway.

I wonder if I'm supposed to beat the egg whites into stiff peaks.  The recipe doesn't call for that, but maybe I should try again.

I also want to just praise God for a few things:
  • Ben is still seizure free!
  • He has had no adverse reactions to the US version of clobazam.
  • He has had blood draws every two weeks and everything continues to look good.
  • Aside from the lingering speech issues, he is doing great!  I almost wouldn't believe that the past 6 months even happened if I had not lived through it.  The difference is that remarkable.
Of course, we are still praying:
  • that Ben will continue to experience freedom from seizures forever.
  • Ben is really struggling with insomnia.  He goes to sleep just fine, but is awake every night for a few hours.  We are pretty sure it's a side effect of the meds.
  • a cure for Doose.  We are so blessed with our team for Ben.  There are some doctors that refuse to use felbatol (Ben's newest drug) because of all of the potential serious side effects.  Others that won't use the diet for years.  I'm amazed at some of the stories I keep reading from other moms around the world struggling to find a cure for their baby.
  • for Ethan and the others who have yet to find seizure heart is so heavy for them.

Tuesday, February 21, 2012

the goodness of ketocal

Ketocal is medical food designed for the ketogenic diet.  It comes in powder and liquid form.  Many kids and babies on the keto diet use this formula alone as their daily source of nutirion. 

We use it in recipes.  I can make muffins and all sorts of intersting things but I mostly use it to make his beloved pizzas. 

I have no idea what is in it, but the thing we love most about the pizza is that it maintains a perfect ratio.  He doesn't have to drink any cream or consume any oil outside of what I've added to the pizza crust and sauce.  He doesn't even have to eat every bite if he doesn't want to because the entire meal is perfectly balanced. 

Back when we were in the hospital, our dietitian told us that she might be able to get us some for free after we ran out of the hospital supply. 

It arrived today.

I wasn't sure what to expect, but I certainly wasn't expecting 4 cases of it!


I called to thank the company and asked how much each case costs so that I'll know for the future.  He said that each case is $164.

That means we just got $656 of free product today. 

What a blessing!  Thank you Lord!

Sunday, February 19, 2012

Cinnamon Rolls...keto style

Ben has loved cinnamon rolls since the first time he was introduced to them by his dad. 

It was their Saturday morning tradition.

When he was two he called them, "cici ro-ro's" and loved to watch them baking in the oven.  This picture was taken on vacation with friends when he was two - he couldn't wait to eat them.

So we have discovered a keto version of cinnamon rolls for Ben. 

He can eat 7 grams of 'oopsie roll' along with 3.5 grams of butter sprinkled with cinnamon.  This gives him a total of 50 calories at a 3.5:1 ratio.

It's descibed as a pita style snack, but it's much more spongy.


108 grams egg white, whipped into stiff peaks
48 grams egg yolk
84 grams Philapdelphia cream cheese
1 gram splenda (1 packet)
1 pinch cream of tarter
1 pinch salt

Add cream of tarter to egg whites and whip into stiff peaks. 

Beat the egg yolk, salt, splenda, and cream cheese together.
Fold the egg yolk mixture into the egg whites. 

Make 6 mounds on a cookie sheet and bake for 30 minutes at 300 degrees.

Enjoy!  He savors each bite (about 5 of them) and it's usually gone in about 3 seconds.  I cut the others into the correct portion and freeze.

I think he's growing tired of his snack choices.  Up until this weekend, all he's wanted to have for snacks are the sugar cookies, these cinnamon rolls, and popcorn that is swimming in butter.  But the last few days he has complained that he wants something else.  I need to get back to the cook book to see what else I can offer him.  It's hard to find something to stay within the 50 calorie range - remember this? 

It's hard to get excited about offering him 1/2 grape and 1 ounce of cream as a snack.  So it's back to research!

Ben still continues to be seizure free!  We don't take this blessing for granted.  We are so thankful for God's unending grace.

Tuesday, February 14, 2012

happy {love} day

Thank you for bearing this burden with us..
for believing for us...
for hoping with us...
and enduring this journey alongside us...

we are blessed with the greatest friends and family...

Thank you for demonstrating such love to us.
We pray that you are surrounded by love today.

If your heart is heavy today, hold on to this:

"If you'll hold on to me for dear life," says God,
"I'll get you out of any trouble.
I'll give you the best of care
if you'll only get to know and trust Me.
Call me and I'll answer, be at your side in bad times;
I'll rescue you, then throw you a party.
I'll give you a long life,
give you a long drink of salvation!"

Psalm 91:14-16

Monday, February 13, 2012

3 months on the diet

Tomorrow marks 3 months on the diet. 

November 14th seems like such a long time ago.  We've had so many highs and lows in the past 90 or so days.

Here are some lessons we have learned on this diet:
  1. Pay attention in math class.  seriously. 
  2. I need to buy stock in olive oil and macadamia nuts.  :)
  3. Dawn really does cut the grease - it's the only thing that gets the dishes really clean.
  4. One gram is very small - trying to measure things to the gram is a great lesson in patience.
  5. Forgetting is a blessing sometimes.  I was coaching him through various scenarios about food before Leeon and I went on a date.  I asked him, "What if Mrs. Kelly asks you if you want a chip?"  He asked, "What's a chip?"  :)
  6. The willpower of a four year should be bottled and sold. We were in the grocery store purchasing the macadamia nuts the other day and of course the aisle was filled with chips and snacks galore. He looked over at the red Doritos bag and forgetting their name asked, "Mama are 'dose' on my 'yist'?" I said, "No, Ben I'm sorry." And he said, "'Den' I'm not even going to 'yook' at 'dem'." He closed his eyes and turned his head. Oh to have that kind of willpower!
  7. Food is the center of attention during celebrations and is used for rewards far often that I ever realized.
  8. There is good everywhere you look.  Friends are constantly encouraging us with their words of support.
  9. It's easy at times to get lost in negativity while doing the mundane tasks.  If I'm not careful I begin to focus on what we have seemingly lost instead of the miracle unfolding before our eyes. 
  10. We can do hard things - with the help of our God.  It's hard to change your lifestyle.  It's hard to see your child miss out.  It's hard to hear your child cry of hunger (like tonight).  But we get up and keep trying. that things are going so well what are we to do?

The doctors told us in December that the diet was most likely proving to be ineffective and we could quit.  We didn't feel good about it. 

Here we are after a month and a week or so of seizure freedom and I'm not sure what to think.

So we are going to wait.  We go back to the neurologist in April.  At that point, we will talk about what the options are.  Maybe we can start to wean a med instead of the diet.  The diet comes with it's own set of risks, complications, and side effects - but the drugs have so many more.  If we had to choose, we'd like to be off the drugs. 

It's the harder, less convenient choice - but overall better for him.

Tonight our resolve is to continue to fight epilepsy.  We will keep going.  Kids are usually off the diet in about two or three years - that means we could be as far as an 1/8 of the way down the road.  We can't give up now!  I posted this scripture a while ago, when we were in the midst of the struggle.  But it's still true for today.  "Not a day goes by without His unfolding grace."

"So we're not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without His unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever." I Corinthians 4:16-18

Thursday, February 9, 2012

Prayer for Ben's buddy

Remember Ethan?

He has had a 28 day reprieve from tonic clonic seizures - until now. 

The frustration.  The helplessness.  The fear.  The questions.  It all comes rushing right back in.

Please pray for this family. 

Pray that Bob and Rebekka will have peace and wisdom to know what to do.
Pray that Ethan will be completely healed.
Pray for Ethan's siblings - I imagine that they are struggling too.

I recently discovered this song and it's so peaceful...

"You are everything You've promised; Your faithfulness is true."
His faithfulness is like no other.

You can read more about Ethan here.

Thank you for praying.

Tuesday, February 7, 2012

an entire month of seizure freedom

Ben had his last seizure on January 6th.  We've made it an entire month without any seizure activity. 


That may not seem like much, but it is huge! 
This whole thing exploded on July 5th and we had a 30 minute EEG done and the results were abnormal.  Then a vicious cycle began - increased seizures, new meds, honeymoons, and hospital admissions.
We were admitted to the hospital on August 23rd - 25th. 
Then again on September 28th - October 1st. 
Then we went in again on November 14th - 18th. 
Our final admission was December 25th - 28th.
The first week of January we saw the most seizure activity of all time.

When I look back and think of where we have been it makes the fact that we have had over 30 days of complete seizure freedom even more exciting. 

This month we have:
~ not had to call Ben's neurologist on a daily basis
~ not had to use Valium as a rescue med
~ not had to write down seizure activity in his journal
~ not had to see him wearing the helmet
~ not had to sit with him at every minute to make sure he was safe
~ not had to sit helplessly watching the clock while he lay seizing

Looking back at the journal I am astonished.  On January 1st, I walked back into the room (after leaving him for about 2 minutes) and he was eating his breakfast.  His face was absolutely covered in butter and cinnamon.  He was having so many myoclonic jerks that he kept falling into his plate and/or hitting himself in the face with the pancakes.  It was heart wrenching to see him that way.

I have a video on my phone of him trying to play his drums and his hands wouldn't stop jerking upwards so he was hitting himself in the head with his sticks - with his helmet on.  He could only use the foot pedal for the bass drum because his hands wouldn't cooperate.  We had to sit behind him as he played to ensure that he didn't fall during a seizure. 

He was having hundreds of these 'small' seizures every day.  He was having multiple tonic clonic seizures in a day.  On January 3rd, he had two tonic clonic seizures - those were his last.  Then the drops started to decrease.  He went from having 9 every 10 minutes to having 5 every 10 minutes.  Then they dropped to about 5 every hour.  On January 6th, he had about 25 'small' seizures in the entire day. 

And then just like that the seizures stopped.

Our hearts are thrilled!

Our prayer is that it will continue.  Wouldn't it be great if we could update the blog every month with the same great news?

I'm so thankful that we are experiencing our miracle, but I'm very aware that there are so many that haven't yet.  There are a lot of "Doosies" out there who are still struggling with too many seizures...too many kids still at the hospital...too many people whose hearts are broken...I can't explain why the struggle eases for some and continues for others.  But I can tell you that my Father remains the same whether you are on the mountain top or in the valley.  Stay strong - you may wake up tomorrow and realize it's the first day of your miracle...

Saturday, February 4, 2012

Sugar cookies...keto style

Every Saturday, I make 12 cookies, 5 pizzas, and 7 days worth of pancakes.  It usually takes me about 3-4 hours to get it all done, but it helps the week run smoothly. 

Ben can have two, 50 calorie snacks a day. I found this recipe early on in our keto journey and he has loved it ever since. He eats one cookie every afternoon.  Here's a closer look at the cookies.

Basic "Sugar" Cookies (from The Keto Cookbook)
5.5 g Coconut Flour
10 g raw egg, mixed well
8 g Coconut Oil
7 g European-style butter
2 g Truvia
4 drops of Bickford's vanilla flavor

 Coconut flour.
 Add egg.

Melt the coconut oil and butter together.

Mix together and bake for 12 minutes.

They are about the size of a vanilla wafer - but they are very soft and extremely moist.  I can only taste coconut (which I don't like), but Ben loves them!

This recipe was very confusing at first because it doesn't break down how much each cookie should weigh.  It merely says to divide the batter into 3 silicone baking cups or 6 mini cups.  I wasn't sure if I was using the regular or mini pan, so I looked online to discover I had the mini pan.  So when I had quadrupled the recipe, my mind was quickly overwhelmed about how to figure out the calories.  I had quadrupled the recipe but was making only 12 cookies - at first I thought I had to make 24.  But thank goodness for my dad!  :)  He walked me through it - just like in the good old days when I was a third grader and couldn't solve a story problem to save my life!  Basically, if I had made 24 cookies, he could have two, but since I only made 12, he just has one.  I'm very thankful for a recipe that he loves (and I try not to think about it mathematically too much because I still get confused).  :)

Every night at dinner he asks, "Can I have pancakes in the morning?"  And the answer is always yes.  He's had the same macadamia nut pancakes every morning for at least 2 months.  He loves them.  Every night before bed, his last words are, "See you in the morning with the pancakes!" 

I love his optimism.

We are still enjoying seizure free days.  Today, we raised the training wheels on his bike...went for a walk...played at the park...and enjoyed every minute of regular. 

We are continuing to trust in His plans believing that they are good and true. We don't know what the future holds, so we remain focused on today and focused on Him.

Wednesday, February 1, 2012

a new month

It's February 1st - a new month.
We are starting this month off seizure free.  The last time we had a seizure free month was June 2011.

I bet that we'll get to add February 2012 to that list soon.  :)

I'm taking Ben to get a blood draw again tomorrow.  His results all came back normal from the last draw.  His depakote level was 77 (50-100 is considered a good therapeutic level).  His felbatol level is low so that means if seizures return, we can increase that med.  We will do these blood draws every 2 weeks.

We have been getting clobazam from Canada for the last several months.  It is now available here in the US.  It costs $40/month in Canada, but it would cost us $800/month if we didn't have insurance.  (Thank you God for insurance!)  Because it's brand new, there isn't a generic version yet.  But our neurologist gave us a savings card from the manufacturer that will help with our copay.  It'll probably end up being about the same considering we don't have to pay shipping any longer.  We will make the switch in about a week.

I am a little concerned about making the switch because even the slightest difference can alter his seizure control.  Some moms on the support group noticed a difference when they made the switch.  But I don't think any of them had complete seizure control when they switched so it still could be coincidental.

We are praising God:
~ for a blessing from a friend and her family...God gives us more than we could ever ask or think!
~ Ben has been seizure free!!!!!
~ we are starting to breathe a little easier and enjoy Ben's good health

We are praying:
~ that his switch to the US version of clobazam will be smooth
~ that Ben will remain seizure free
~ that they will be able to quickly find a vein tomorrow for the blood draw
~ for another family I've been talking with on the support group.  I can't share many details except that there are 2 children in this family with Doose and neither one is doing very well.  Please join us in prayer for C & P...

Thank you for loving, praying, and supporting us!

Remember to check out Team Ben's Epilepsy Walk - our team continues to grow!