Sunday, July 21, 2013

Ketogenic Diet - 1 Month Check Up

On Thursday morning, we went to Children's Hospital for our 1 month blood work and check up.  Karter had to fast through the night and until his blood work was completed.  It was a simple draw and he did very well.  No tears at all!

We had him weighed and he has regained everything he lost in the first couple of days on the diet.  They were very pleased.

Up until the appointment, Karter had gone 9 straight days without a seizure and the four days prior to that, his seizures would start but not manifest into anything.  The keto team was very pleased; so much so that they found Karter's neurologist and brought her in to tell her the good news.

Should this pattern keep up, they have said that the reduction of meds come September is a very good possibly.  We were very happy to hear that.

We will go back at the three month mark (September) and the decision on whether to keep him on the diet long term will be made.  At the same time, they will make a decision about medication.

We are very pleased at how well Karter had done on the diet.  Although extremely prep intensive on my part, we really feel it is worth it and we are falling into a good routine for prep. 

Thursday, July 11, 2013

Happy 7th Birthday

As I write this, the sun is streaming through the window as you lay quietly sleeping on the couch.  I am always moved at how your peaceful nature touches me deeply.  You exude a quiet strength, patience and a grace that teaches me daily how to do better.

I spent the last couple of days reminiscing all the terrain we have covered in your 7 years.  (WOW 7 years!!!)  There have been twists, turns, smooth roads and rocky paths.  We have navigated life never feeling alone, always perfectly aware that our Heavenly Daddy has led along the right path.  I am so thankful for that partnership!

This past year has been a great one!  In your face and I see such a "big boy".  That little boy look is gone and you have matured so much.  Your such a handsome little man!  Your legs stretch for days and I wonder when they will be longer than mine!  You even have some lose teeth...I can't wait to see that toothless smile!

I love that you reserve soft kisses for only your Mama ...its a touching gesture that melts my heart every time.  I cannot believe how well you make eye contact now too, I see such depth of knowledge in your eyes, a world of treasure just waiting to leap out!  I love that bashful look you give me as you look at me out of the corner of your eye, pretending to not notice me - you're a silly boy!

Your, have you ever found it!  The gleeful squeals that I hear first thing in the morning to tell me you are awake and ready to start the day.  The screams of delight when you see or do something you like.  We can't forget that infection laughter that bubbles out of your belly when we play "ahhhhh boo!" and tickle you.

I love you son, more than I can ever express in a million words.  You continue to expand my capacity for love, faith and patience.  You are a treasure and a joy.  May this year be one full of new things.  You have endured much this past year, even this past month.  Seldom you complain and often you just "go with it"...I learn SO much from you!

May this year be full of amazing new miracles, dreams and new adventures.  You are one of my greatest treasures.  I love you so much.  Happy Birthday!

Saturday, June 29, 2013

Ketogenic Diet - Week 2

Last week of school CRAZY!!!!!!  So glad summer is here and I can come up for air.  All week I knew I wanted to post and all week I just could not sit down long enough to write anything.

Karter had 5 seizure free days, YEAH!  He then had two days where he had night seizures.  He then went three days and had another one.  This is the best seizure control we have had in a long time, so we thought that was pretty good for week one.

Had had a could of issues with digestion and constipation, which obviously made for a couple of grumpy days.  But once we got that all worked out, he was back to his happy self.  Karter seems to be regaining is energy and is sleeping less during the day and very well at night

The food is still enjoyable for him, there is not anything that he has rejected.  I spent one night preparing the weeks meals, it took me a couple of hours but did not seem as hard as the first time.

Overall, I would say this first couple of weeks have gone real well....

Friday, June 21, 2013

Ketogenic Diet - First Day On Our Own.

Karter was up quite early this morning.  He woke happily and played until I went into his room just before 7.  I could tell right at the beginning of the day, that he was alert and happy.  He did not have a seizure last night.

Karter ate breakfast and really like it!   It was a new concoction that is a cross between warm cereal and pudding, made from a powdered substance called "keto-cal".  Think of it as vanilla protein powder; its main purpose is to be used as a drink, however there are many other things they make from it.  It's all trial and error, I figured if he liked it,  it's just more variety that we have for his menu.  Funny thing is because of these new preparation methods and recipes, the last few nights I have been dreaming weights and measures (grin)!

I had decided to see how Karter was into the morning before I sent him to school.  It was clear to me by 10:00 that he was ready to go back.  He had a solid 30 minute nap and woke full of smiles and energy.  I took him to school around 10:30 and he stayed the rest of the day.  When I arrived to pick him up he was laughing and happily vocalizing loudly.  The report was that he'd had a great day! 

He was so engaged and alert and happy for the rest of the afternoon and evening; my heart was so full to see him returned to his typical happy self.  Again, he ate all his snacks and meals and he drank a lot of water (which is our biggest challenge, but of highest importance).

After dinner, I spent about two and a half hours, preparing meals for the next number of days.  I was surprised at how many variation I could make with just a few basic recipes.  It did take me a fair bit of time, but I think a lot of that time was just trying to get myself started.  That initial "jump in with two feet" was tough, but once I was started, things went fairly fast.

I am experimenting with a lot of different methods right now to see what will work the best for me.  Today's creative trial was taking an ice-cube tray, spraying it with coconut oil cooking spray and then portioning out 15g of sweetened cream for Karter's snacks.  My hope is that I can pop each individual portion out into a container with fruit, jello, cocoa or other "approved" ingredients for his snacks.  For immediate use, it would be like ice-cream.  We'll will see how it holds up if it thaws in a container for lunches etc.  I am hoping this will save me time each day as there are three snacks to prepare.

I think our first day on our own went pretty well...

#1 lesson learned...when you are out for the day, bring more meals than you think you might need.   I had brought Karter's morning snack and lunch (since I didn't really think he would go to school all day) and I had to run home to get his afternoon snack because he was able to stay the whole day.  There is definitely not as much freedom to "just grab something" when you are out.  So I just need to be sure that I over-plan for the day, to be sure that if something comes up and we don't make it home in time, we are prepared.

Ketogenic Diet - Day 4

Karter slept well and woke at normal time, just before 7 with no seizures.  He appeared more alert this morning than yesterday.  He ate breakfast before we left for the day and then slept all the way into the hospital.

We had an appointment with the neurologist at 9am.  They weighed him and he had lost a bit of weight since the beginning of the week, but they tell me that is normal in the "switch".

The neurologist explained to us that they look at the next 3 months as trial.  She assured us that it can take almost a month for him to gain back all his energy.  The will use this next month or so to "tweak" the balance and make any necessary changes.  At the three months mark, depending on seizure control, they may adjust his anti-seizure medications, but not before that.

We were given the final prescriptions and supplement information and then we finished off the morning with one more time in the kitchen preparing food for the following 24 hours.  When we were done, we were sent on our with with the final paperwork and supplies that we needed.

Kurt and I debriefed a bit about the week, when we went to lunch.  We both agreed that although we received a lot of information, we were not feeling overwhelmed, frustrated or worried about the days that lie ahead.  Instead, we were relieved and felt we had been given all the skills we needed to face this each day. Interestingly enough, the lack of information before we started and all the unknowns were so much harder on us than making the changes to our life to accommodate this treatment. For anything that may come up that we might not understand or know how to handle, a support team has been put in place to assist us, so we are not on our own.  We are so thankful to have a great team of people on our side!

Although Karter slept for most of the morning by lunch, he seemed to have regained his alertness and was getting back to his normal self.  By evening, he was laughing and full of energy, we even managed to keep him up late.  He ate all his meals and seems to really enjoy them.   My biggest concerned was about what he would eat and that he would like the food given to him.  He has really surprised me and made this transition easy.

We are pretty happy that the "induction week" is over and we are confident as we move into the next few days and weeks that we can make the necessary adjustments to life to accomplish a successful transition for Karter.

Wednesday, June 19, 2013

Ketogenic Diet - Day 3

Karter woke at normal time this morning, however he was not his jovial self.  He seemed tired but tolerant.  He played on his mat for a short while until it was time for breakfast.  He seemed uninterested and was increasingly tired.

I had to force in the breakfast and by the time I was done, he was fast asleep. 

We left early so that we could run by the store and pick up a couple necessities that we needed for Karter.  He slept all the way in.  I just happened to walk into the store behind Kurt and Karter.  I did not even get into the door when I saw Kurt coming out.  I noticed that Karter was covered in vomit!  He was lethargic and needed to be cleaned up.

Sparing you with all the details of no soap and towels in the washroom and no change of outfit bought, makeshift clean up done, boy wrapped in towels...we headed LATE to the hospital for the days sessions.

GREAT start to the day!

When we got the the hospital, Karter was still very lethargic and was in a deep sleep.  We talked through the events of the morning.  In the end, it was determined that Karter was "too ketotic".  This means, he went into ketosis too fast and so his body could not cope.  The solution...30 mls of apple juice.  The sugar in the juice raises the blood sugar levels bringing down the keytone level in the blood.  We skipped morning snack, gave Karter a sponge bath and new clothes and let him nap for the rest of the morning.

The morning was exactly what they had warned us about, so it was comforting to know that there was nothing out of the ordinary to worry about in his current state.

Once we were all together, we headed to the kitchen again.  This time, it was our turn to create the meals.  We did all his meals and snacks for the next 24 hours.  (I'm not gonna lie, there was a little competition going between Kurt and I to see who could get the closest weights with the foods...we had to have some fun!).

Karter slept the morning away. We woke him for lunch, which he ate, and then he headed back to sleep for the rest of the afternoon until our return home.

We went over 1 last part of teaching after lunch and then headed home.  We will no longer have to take his blood sugars, but we will have to measure keytones twice a day ongoing.

Karter ate dinner and then perked up for the evening.  By the time he went to bed, he seemed to really have come around and seemed to be a bit more himself.

This by far has been the hardest day for Karter so far, we have been told that it is because Karter's body is making the major "metabolic shift" today.  The lethargy and vomiting are normal and the tiredness can continue anywhere from 2 days up to a month; we are really praying that for Karter we see a fast recovery and that he returns to his old self quickly.

Tomorrow is our final day in clinic, we meet with the neurologist and do the final sessions before being "set free".  Not feeling overwhelmed at all, just very mentally tired.  Crazy how much intense learning takes out of you!

Ketogenic Diet - Day 2

Karter woke up happily this morning at 8.  We took his blood sugars and measured keytones when he woke and everything was in good range.

Karter had a liquid breakfast.  This was not received well and I ended up syrigning it all in...much to his disgust, but I did get it all in ;-)

We were back to Children's for 10am today.  When we arrived, we went over the keytone and blood sugar levels from the day before.  Karter had a seizure early this morning, probably from the extreme change his body was starting to undergo.

Blood sugars were all within normal ranges and he was already well into ketosis (he was at a 16 by morning, which was very fast).

We went straight to the kitchen to watch how his meals are prepared and how to follow the recipes.  Every ingredient for each meal and snack has to be weighed within .2 of an gram.  So as an example this might be what a recipe looks like (measurements are just examples)

50g heavy cream
39g chicken breast
40g veg
30g mayo

The ratio is 4 fat grams to every 1 gram of carbs.  Crazy sounding based on the Canada food guide, I know.  But if you recall, the food that goes into his mouth is now looked at a medicine, not nutrition.  The nutrition come 100% from his supplements.

We created a days worth of meals together.  Karter eats every 2-3 hours.  And does not go more than 12 hours at night between meals.  This is essential in maintaining good ketosis and blood sugar levels.  His day looks like this:

Breakfast 7:30/8
Morning Snack 10/10:30
Lunch noon
Afternoon Snack 2:30
Dinner 5
Evening snack 7:30

Liquids are very important and he is to consume 1.3 liters a day.  This is our biggest struggle as Karter is not much of a drinker, but we are giving it our best.  He did not do too bad today.

Lunch was Karter's first solid meal since being on the diet, he ate it in seconds.  He really enjoyed it!

After lunch we did more training.  We talked about medication he can and cannot use (due to carb ingredients), topical items (creams, soaps, shampoos etc), toothpaste and other items we use in normal life.  We talked about alternatives that can be used.

We took his blood sugars at 2pm and then left the hospital for the day.  Karter enjoyed the rest of the day and was in a very happy mood until bedtime.  He ate all is snacks and dinners without any issue.  Today was overall a very good day for him.

Tuesday, June 18, 2013

Ketogenic Diet - Day 1

We arrived at the hospital at 9am and went to the lab to have blood work done.  Karter was a trooper; especially since they had to poke him 4 times to get all the blood they needed.  He never winced or complained, he is an amazing guy, I would have been passed out on the floor for certain.

Once we were finished at the lab, we headed off to the clinic to get a baseline heigh and weight as well as a blood pressure reading.

Training started at 10am.  We met with the clinician of the ketogenic diet team.  By this point, Karter had been fasting for 14 hours and had only had a small amount of water in the morning.   His mood was good.  He played happily and was engaged,

We did training for about 2 hours, going through a basic understanding of what the diet was.  What we would need to watch over the next 48 hour and then ongoing.  We learned how to measure keytone, blood glucose and to spot and treat hypoglycemia (low blood sugar) or keto-acidosis (when the build up of keytones in the body are too high).  We learned what he can and cannot have on the diet and various other basic concepts for the diet.  I had read all the information they had suggested, so this teaching unit was just a deeper understanding, not new information.  I was pretty happy I had done my homework ;-).

By lunch time, Karter had his first meal, a liquid meal (fluids are very important on the diet, but of extreme importance in the first week as the body starts to process the high amounts of fats.

Karter has 30 minutes to consume each meal or snack, from the start of the first bite.  Once the 30 mins is up, he in not allowed to consume any more.  He got 2/3 of the “eggnog” shake that was his lunch.

We met with the dietician in the afternoon and had an hour of training with her.  Before we went home, we had to take Karter’s blood sugars.  For the first 48 hours, every 6 hours, blood sugars need to be taken;  8 and 2 around the clock.  This was something I was not expecting.  Luckily, Kurt was able to step into this role!  Again, my son, such a trooper, just let us do what we needed to do without complaint.
We were finished around 2:30.  We found ourselves mentally tired from the amount of information we consumed, but not at all overwhelmed.

Karter had a snack in the afternoon and evening and another liquid meal for dinner.  His portion size is shockingly small but the caloric density of fat is far higher than that of charbohydrates, so the portions appear small but the calories are the same.

One thing I really heard and took with me was that the food he takes in is to be thought of as medication, not as nutrition for his body.  Throwing out all that we know of what we need to eat to meet out nutritional needs and replacing it with an understanding of how this metabolic change in how the body process its fuel.  Karter’s nutrition will be dependent on supplements more than the food put in his mouth.

We took his blood sugars at 2am and they were still within the normal range.  So far, Karter has responded well and seems to be tolerating well.

Monday, June 17, 2013

A New Journey Begins

Today begins a big change for Karter.  This morning, Karter will start a medical diet called the Ketogenic Diet.

Wiklipedia defines this diet as:
"The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control (refractory) epilepsy in children. The diet forces the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures."

We will spend the next four days at Children's Hospital  getting blood levels drawn, learning how to do the diet and taking Karter through the process of induction onto the diet.

The second and third day of the diet are said to be very hard on Karter, lethargy, vomiting, headache and an overall "sick-feeling" day is what we have been told to expect.  We are praying that Karter is not hit as hard.

The diet for me, will be labour intensive.  Measuring and weighing within .02 of an oz for everything he eats.  Recording and planning for every meal of every day.  There is no wavering.

I woke early this morning and spent some time with the Lord, laying this all before him.  An concern of side effects and risk (there are some significant ones), any thoughts of being overwhelmed and all the other things running circles in my head.  The verse that God gave me was

Psalms 121: 1-7 I lift up my eyes to the hills-- where does my help come from?  My help comes from the LORD, the Maker of heaven and earth.  He will not let your foot slip-- he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep.  The LORD watches over you-- the LORD is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The LORD will keep you from all harm-- he will watch over your life; the LORD will watch over your coming and going both now and forevermore.

I have a peace that we can do this and I have a feeling of hope in what this can offer for Karter's seizure control.

I am going to try to journal about the first few weeks here, let's see how this goes...


Wednesday, January 9, 2013

What new?

Karter has been doing so well at school this past few months.  He is really enjoying his stander and loves being with his peers at gym and music class.

His meds have balanced out and we have better seizure control.  Karter seems to be very happy these days and really alert.  He has started to vocalize a lot - loudly!

This past week, I took him to be fitted for custom orthodics.  His physical therapist feels that it will help with his standing.  He had his feet casted to create custom molds; he was so patient and I think he actually liked it

Here are a couple of current pictures taken over the holidays....