Saturday, September 29, 2012

cream cheese and butter tortilla {keto style}

Ben wanted cheese and pepperoni (that used to be a staple meal) a few weeks ago.  I reminded him that he would have to drink LOTS of heavy whipping cream with it and he quickly changed his mind.
 
I played around in the ketocalculator and came up with this meal using a cream cheese and butter mixture inside the tortilla.
 
We can add this to the failed meals for sure.  Although I love the taste of cream cheese, this guy wasn't impressed at all.  And it still involved a syringe full of oil, so although he got it all down, it won't make its way around again anytime soon.
 
But maybe if I add cinnamon to the cream cheese...hmmm.... 

 

Wednesday, September 26, 2012

the charlie foundation symposium

The Charlie Foundation is a wonderful organization that has helped shed light onto the benefits of the ketogenic diet.  They recently held a symposium in Chicago and although I would have LOVED to attend - it was simply impossible. 

Meryl Streep who played the influential role in the movie, First Do No Harm was honored at this years event. 

I've never watched this movie.  People talked to me about watching it when Ben was so bad off, but I could never bring myself to do it.  I was living the nightmare and the thought of watching it on TV was just too much for me to think about. 

I found this tonight- a tribute to Meryl Streep from this past weekend's event and it is powerful!  Listening to these moms and dads talk about their experience and watching the clips from the movie - wow.

It's hard to believe that we may have actually moved to the other side of such a dark place.  Ben is doing so good!  Watching the seizures on this clip make my heart literally stop.  I hope I never see another seizure for the rest of my life. 



I wish I could have gone...just hearing from other moms - I can't even explain what I'm feeling. 

So, thank you Meryl...thank you Abrahams family...thank you to the Charlie Foundation...thank you to all of the other moms and dads who continue to offer guidance and support to one another...

we are all beating epilepsy
one bite at a time.

Tuesday, September 25, 2012

peanut butter cookies {keto style}

I found a new recipe on the ketocuisine website. 
 
These peanut butter cookies were really good and easy to make.  
 
 




They are a little crumbly.  The ratio is 4:1 so I thought if I increased the egg, maybe they would hold together a little bit better. 

Ben ate them, but hasn't requested them again.  I think I will throw it into our rotation for sure since they were so easy to make and had a great flavor.

Sunday, September 23, 2012

bloodwork update

There are no concerns with Ben's blood work at this time!

His zinc level was normal and his lipids were within the normal range for someone on the ketogenic diet.

His white blood cell count is still low but looks to be trending up again.

This week at school was much better.  He ate his lunch everyday.  :)

He gives it his all at school, so he begs to go to sleep at around 6:30 or 7:00 every night.  Some nights have been better than others in regards to the insomnia.  We haven't tried the melatonin yet because I think I bought the wrong one and I'm afraid to try it without getting the OK from the dietitian.

Thank you for praying! 

We have successfully made it through week one of our first medication wean!

Monday, September 17, 2012

neuro visit

We had a great visit with our neurologist and dietitian!  We felt like we had their undivided attention and that they were actually all on the same page despite the fact that we meet with them at separate times. 

His blood work looked good.  White blood cell was low, but that was probably because of the illness and it tends to fluctuate each time we test it.

Depakote level has maintained.  We like it to be near 100, but it's holding steady at 85.  At Christmas, when things were at their absolute worst, his level was in the 20's or 30's.  So 85, is great!  It also means that we could increase his dosage if necessary.

Felbatol level is also not at its maximum.  This is good because it means we are maintaining seizure control without having to max out another drug.  If we needed to increase it, we could. 

We all agreed that clonazapam is the best one to wean first.  It is a benzodiazepine.  I'm not sure what it all means, but basically this class of drugs is less favored because of the side effects and the dangers involved in long term use.  Since clobazam is also a benzodiazepine, the doctor felt that we needed to try to eliminate one of those first.

Some of the side effects of clonazapm include drowsiness, problems with walking and coordination, dizziness, depression, fatigue, and problems with memory.  All four of his meds have similar side effects, but our hope is that they will be lessened as we decrease each med.

We are weaning slowly.  If all goes as planned, he will take his last dose of this med on November 25th. 

Then in December we will have a short (about 45 minute) EEG.  We've done these short ones numerous times before - since he was two.  It involves sleep deprivation, but no hospital stay.  :)   Then we will meet with the doctor immediately afterwards.  We are praying for no abnormal spikes.  If the EEG looks good, then we can consider weaning the other benzo drug, clobazam.  If it doesn't look good and he's still struggling, then we will look at making changes to the diet.

We talked about the insomnia, and he suggested that we try the melatonin when he wakes in the middle of the night.  He falls asleep just fine - in fact he begged to go to sleep already and he's out.  He typically begs to go to bed at about 7:00 each night, but then is wide awake a few hours later.  So hopefully, this will help.  But the health food store is overwhelming.  It's hard to understand the differences and then trying to find hidden carbs is a task of its own. 

Leeon is taking him tomorrow morning to get more blood work completed.  We are checking on his lipids, his white blood cell count again, his zinc level, and also a metabolic panel, as well as the level of acidosis in relation to the ketones. 

I'm thankful that we had God's peace throughout the entire visit.  We are blessed with excellent medical care.  We are all a little scared about this wean.  The doctor echoed our apprehension, but it's time. 

Our Pastor preached this Sunday on the greatness of God.  In Isaiah 66:1, it says, "This is what the LORD says: "Heaven is my throne, and the earth is my footstool. Where is the house you will build for me? Where will my resting place be?" 

Imagine how big God is - our giant earth is His footstool.  But yet, He cares deeply about my son and the fact that he is more tired than any 5 year old should ever be.  This song has blessed me in so many ways as I think of our great, big God holding the hand of my little son. 

As long as He's here,
we fear no evil,
the way is made straight,
there's good coming,
everything is changed. 

Thank you for lifting us up in prayer today.  Please continue to pray that we will see less fatigue, more stamina for school, and continued seizure freedom.

King of this World
You're holding my hand
And as long as I hold on to You
I know I can stand

Because You’re here
I fear no evil
Because You’re here
The way is made straight
Because You’re here
There’s good for Your people
Because You’re here
Everything’s changed


(Double click on the play button to listen to the song.)

Sunday, September 16, 2012

an empty plate

Ben requested pancakes this morning.

He ate every bite of them with little prodding!

I love the look of an empty plate.  :)

yippee!!!

Saturday, September 15, 2012

thankful

Tonight, I am so thankful...

  • for wonderful coworkers - they wore the Team Ben shirts on Friday to show love and support for our appointment on Monday
  • for incredible family - near and far - always checking in on Ben and helping in numerous ways
  • for friends who might as well be family - they always understand, always offer encouragement, and even think to send a card to brighten my day...love you!
  • for complete strangers who have only heard about Ben, but yet stop to inquire about him with genuine concern {this really blessed me today...it was a gentle reminder that if Benjamin has not been forgotten by those that don't know him personally, then our loving Heavenly Father has certainly not forgotten him either!}
  • for all the prayers that have been prayed
  • for all the hope that has been offered
  • for all the love that continues to bless us on a daily basis
Ben is still very tired.  He begged to go to bed last night at 6:00, but I managed to keep him up until about 7.  I had him sleep with me because of my own worries, and he slept ALL night!  It was wonderful for all of us.  :)  He took a long nap today, laid on me for most of the afternoon and evening and begged to go to sleep a little after 7 tonight.  I'm hoping he'll sleep all night again.

He was not interested in his beloved pancakes this morning at all. When I finally got him to take a bite, he gagged.  This concerns because I'm afraid that means he has reached his limit on this meal. He's eaten it every morning (and often begged for it at every meal) for months now. It's one of our 'go to' meals. It's a staple. I'm hoping if we take a break for a few days and offer him different things, maybe we won't lose it all together.  He did eventually eat two complete meals so that was good.

We've been on the diet long enough that it has become our 'normal' - our daily reality.   When we visited with a doctor for the strep throat visit (not his primary care doctor, but another one in the practice), I found it interesting that a few minutes after the initial evaluation she said, "I can smell the ketones on his breath, normally that is alarming as it means we have a pretty sick kiddo. I'm relieved to know there is a reason for it." I had forgotten the reason for the foul breath - it has just become part of our new normal.

We have been trying to determine what the cause for the fatigue, loss of appetite, and sleep problems could be.  It is very true that the meds can cause all of these.  But the diet could be the cause as well.  Being in ketosis decreases the appetite as well. Apparently, having too few carbs can interfere with sleep patterns.   Many children on the diet take a carnitine supplement because a deficiency in this area causes pretty significant fatigue as well.  But he's still trying to get over strep throat.  Because his body is working hard to fight infection, it could be that he just has little left to give.

Leeon and I need to make a list of questions for our neurologist.  We need to look back over the seizure journal and see if we can find a pattern to give us a clue as to which drug to possibly wean.  We could also discuss 'fine tuning' the diet by lowering his ratio, adding the carnitine supplement, or changing the amount of calories he gets at each meal (maybe changing to 4 smaller meals), etc. 

The bottom line is that we need to make a change, but it is imperative that we make one change at a time. 

Please pray that the neurologist and the dietitian will have supernatural wisdom as well as be in agreement (they are often coming from two different schools of thought).  Pray that they will have time in their schedules to really help us make confident decisions.

I'm sorry this post is so long...writing is sometimes therapeutic for me...

On a lighter note, we enjoyed my favorite movie together with friends tonight and it fits in perfectly with where we are right now in life.  The path ahead is dark and we can't see very well, but we need to 'just keep swimming' knowing that we are not alone.



Thursday, September 13, 2012

strep throat...

Ben ended up with fever at about 3:00 a.m. and this afternoon, the doctor said he has strep throat.

Maybe once we get some antibiotics in him, we'll see an improvement.

He has literally slept all day long. 

Thanks for praying for healing as well as continued guidance in decisions made on Monday. 

Wednesday, September 12, 2012

prayer requested...

Ben is having a more difficult week.

Would you pray specifically that...
  • his body would rest tonight - all night and that he would sleep soundly, deeply
  • he wouldn't have any headaches tomorrow
  • that his appetite would return - meal times are becoming very lengthy and a battle
  • that the fatigue during the school day would not be so challenging for him
  • that we would have wisdom
We are growing concerned because it appears as if a pattern is developing.  His level of ketones seems higher than ever and as the ketones increase, his level of fatigue also increases.  This seems to make it actually harder for him to sleep all night long, so the fatigue worsens.  Then because he's so tired, his appetite decreases.  The less food he eats, the higher his ketones become, and so the cycle continues.

I'm thankful that our neuro appointment is on Monday.  We are praying for wisdom for Dr. Perry and Jessica, our dietitian.  We got blood work done this morning, so I'm hoping that it will give us some clues as to what changes to make.

We were not planning on weaning any meds until December, but it's becoming apparent that we need to do something. 

But...the fear that threatens to grip my heart as I even type that is...too much.  We have no assurance as to what changes to make.  We have to just make an educated guess and try to remove the right portion of the Jenga tower that is seizure control.  We won't know if we've made a wrong move until the damage has been done.

Please pray for peace and wisdom for us as we trust in His guidance.

Thursday, September 6, 2012

my focus for this month....

Determination.


Epilepsy wanted to ruin this day for him...but it didn't.


We are determined to keep moving forward. 
Despite the daily challenges that still exist, we are determined to keep going. 
We are not giving up. 
We are not giving in to fears of the unknown. 
We are pressing on.  One.step.at.a.time.

I'm so proud of my little guy and so thankful for my our school.  Each day, he's adjusting a bit more; growing more confident; becoming more interested; and understanding how it all works.


We are praying that:
  • God will give us wisdom in any decisions made at our neurology appointment this month.
  • Ben's bloodwork will all return normal this month.
  • For continued endurance...he deals with large amounts of medications that cause some pretty severe fatigue, as well as place him in a 'fog'.  He has to fight hard to get past all of that to focus. (and focusing is hard enough for any active 5 year old boy!)
  • We have found his forever miracle...that the seizures will never return.  ever.
We are rejoicing that:
  • he hasn't had a seizure in 8 months.  we are soooo close to celebrating one whole year!!!!
  • some nights are better than others in regards to insomnia
  • he has not shared any food at school...I know that God is empowering him to avoid temptation
  • he's in a regular ed, all day, kindergarten class...the same can not be said for all "Doosies" and 8 months ago we weren't sure what the future held for him.

My scripture for this month is a bit long and the version is not traditional, but I love it.


I wrote about it months ago, on Christmas Eve, because it gave me great hope for the future.  And here we are 8 months later and I'm still filled with hope and renewed determination to keep moving forward.  I can't wait to see where we'll be in another 8 months. 
 
..."not a day goes by without His unfolding grace"...

Tuesday, September 4, 2012

peanut butter tortilla {keto style}

Ben wanted to eat a tortilla the other day without the taco meat.  I suggested we put peanut butter on it and it was a HUGE success!

He loved it! 

It is by far the simplest meal since it doesn't include the multi-step process involved in making the oopsie rolls for the peanut butter sandwhichs I mentioned earlier.  Since the diameter of the tortilla seems to be greater than the oopsie rolls, it helped keep most of the peanut butter mixture where it belonged instead of falling out onto his plate. 

I used the same butter/peanut butter combo, put some macadamia nuts on the side, and gave him only 1 syringe full of olive oil. 


I love days like these...

Sunday, September 2, 2012

granola cereal {keto style}

I was so excited to try this recipe with Ben! 

Jennifer, another keto mom sent me an email with some new recipes and I knew I had to try this one out. I tweaked it just a bit to find the correct ratio for Ben and came up with this:

13 g. crushed dry roasted almonds
18 g. crushed macadamia nuts
9 g. crushed pecans
12 g. unsweetened coconut flakes
3.5 g. truvia

50 g. almond breeze
5 g. water


I mixed together all the dry ingredients into a bowl.


Then I added the almond breeze and water and it looked like cereal! (The water is just there to help the almond breeze go a bit further, you can use that as needed).


I think this cereal is very good. The almond breeze tastes nearly identical to the flavor of 2% milk, but only has 40 calories! I was very hopeful for this meal idea...

When I told Ben he could have cereal, he was so excited and asked, "Is it fruit loops?" I told him no, but I then I showed him how I was eating granola cereal just like him (only mine came from a box). He was hesitant about trying something new.

He smelled it (as he always does now when approaching new foods) and said, "Hey! You put nuts in here!" He was less than thrilled about that since lately he hasn't appreciated the flavor of macadamia nuts as much as in the past.

Another issue he had with it was the 'milk'. We have tried to get him to drink the heavy whipping cream by adding water and a drop or so of liquid sweetener, but he has always hated it. We called it milk and forced it unsuccessfully each time. So, when I told him that he could have milk, his response was, "But mom, you know I don't like milk." His statement is ironic since before keto, his days were filled with sippy cup after sippy cup of milk.

I forced encouraged him to taste one bit and as expected, he said he didn't like it. I need to see if I can lower the amount of macadamia nuts as that was the most dominant flavor, but it's also the highest fat ratio ingredient. I think Jennifer adds oil, so maybe if I try that I can decrease the nuts.

I'm confused about the almond breeze. The label says that is has 3.5 grams of fat, 1 carb, 1 fiber, and 1 protein. Our dietitian allows us to use net carbs so that means that one serving is essentially carb free. So, in my mind this makes the product 3.5 grams of fat per every 1 gram of protein. (3.5:1) But when I tried to use it as a perfect fat source in a few snacks, I couldn't get it to balance correctly. I need to talk with our dietitian about it specifically.

But before I can use it too much, I need to get him to believe that he does like milk...so that he'll be willing to give it a chance again.