The “New” Charlie Foundation – Check it Out!

If you have not yet had a chance to view the new Charlie Foundation website – Check it out!  This was our “life-blood” resource when starting the diet and continues to be our number one recommended Ketogenic Diet resource. Thank you Charlie Foundation team members for providing this incredible resource!

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http://www.charliefoundation.org 

 “He who refreshes others, he himself will refreshed.” (Prov 11:25)  May you all be blessed in abundance for all  your work of “refreshing” others!

Daily Disciplines – Reaping A Harvest!

The other day  I received a question on what supplements Autumn takes. I thought it might be helpful to list out everything – just so that if you have come to this blog as a “newbie” you can get a rough idea on what supplements might need to be taken. However, it is EXTREMELY important for you to be working with your dietician as to what YOU will need for yourself, or your child.  Again, EVERYONE is different.

When we first started the diet, Autumn could not swallow pills – to this day, she still has a hard time.  We tried practicing early on, but it seemed to cause more stress than progress.  She can take very small capsules, but found it very difficult to swallow anything large. So what was our solution? Being faithful to what she could do. I could not do what she does, and I would prefer her to do it my way 😉 but as long as she gets the vitamins down – all is well!

Here is a picture of all her vitamins: It looks overwhelming, but…

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It is split up three ways during the day:

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First AM:

Autumn always has at least 1 Tablespoon of Coconut oil – it is either part of her breakfast food– as in the Apples and P-nut butter recipe – or straight off the spoon. And I take mine right along with her!

We just put some in a metal cup and melt it on the stove:

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After breakfast:

1 – Levo-Carnitine* – crushed on a spoon and taken with a bit of water.

½ – kphos (Prescription) tablet dissolved in water.

1  – 5g Iron

1 – A and D capsules (When we had her check-up lab work, we found her to be low in these.)

This is what the Carnitine (a before and after of the pill crushed up) and K-phos look like:

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Late Afternoon:

Every afternoon around 4:00 Autumn has her “Vitamin Snack:”

We measure out about 5 grams of butter, and add:

½ tablet daily vitamin – crushed up.

2  – Bone Basic  capsules are opened up and added into the butter.

¼ of a Kelp capsule open up and added in to butter.

All of this is stirred up and spread on a “Keto Cheese Cracker” (See page 118  in the Keto Cookbook or check out my post: “You can’t eat Just one.” 

She then somehow puts that all in her mouth and drinks water at the same time to swallow it down – again, not my way, but it works – and she does not complain!

She also has 1 more Levo-Carnitne, and another ½ kphos in water.

She has this, along with Kale chips, cheese and pecans – and sometimes her “keto soda” or “keto-tea”- and she has had this everyday since May of 2012! This works for her – she enjoys it (well maybe not the butter vitamin cracker 😉 ) – it may not work for you, or your child might like some variety.  The point is, it is doable – you can work something out.

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Evening:

In the evening before going to bed, she takes one last levo-carnitine (crushed up with a little water on the spoon).  If I feel she might be getting sick – or if there is sickness in the house, I also have her take some of the Vitamin C powder  – which also has magnesium  and that can help with constipation.

There have been times when Autumn’s TC02 levels were too low and her Anion Gap too high so our Dieticain advised that she drink approximately 1/2 tsp baking soda in water and have her drink it twice a day to bring the acidity down.

*A note on Carnitine:  When we first started Autumn on the diet we did not know if we should use carnitine or not. On her first set of follow-up labs, her carnitine was low so we started her on an over-the counter brand. Initially that helped, but then her levels became low again. Several months later on another follow-up lab test we found her to be low again- despite quite a high dose of the over-the-counter, so we started her on the prescription strength, levo-carnitine. The result has been an improved carnitine ratio which increased her ketone levels. This allowed us to lower her ratio and thus were able to add more fruits and veggies.  The dose she is on is actually lower than what is typically prescribed for her weight, but with her ketone levels raising quite high, it was a good dose for her. Once again, I have found the blood ketone monitor to be an indispensable tool. Without having the monitor, we would not have seen the levels rise. Here is an explanation of carnitine from our dietitian:

It is quite common for carnitine levels to go low on the diet.  Carnitine is like a shuttle bus that carries fat into the mitochondria, where it is burned for energy.  A normal diet would be analogous to having a shuttle bus show up when there are 5 people at the bus stop.  Everyone can get on the bus.  A ketogenic diet is analogous to having a crowd waiting at the bus stop, and not everyone can get on the bus unless more shuttle buses are added. 
Our bodies can make carnitine, but many children can’t make enough carnitine to meet the added demands of the ketogenic diet.  A carnitine deficiency can cause ketones to go low, weight loss can occur because not all of the fat is utilized and the body doesn’t get enough calories, and children can have more fatigue and less endurance.  In more severe cases, carnitine deficiency can cause metabolic acidosis and cardiomyopathy (heart problems).  So it is important to make sure children are routinely tested while on the ketogenic diet, and to supplement with carnitine if a deficiency develops.

Some people have asked what labs we do:

Suggested Laboratory Tests For Ketogenic Diet

Once again, this is posted as a general guideline for testing. Please be working with your doctor/dietitian to be covering your needs!

Baseline lab draw, then after 3 months and then every 6 months:

Comprehensive Metabolic panel
Lipid profile
CBC with Differential
Betahydroxbutarate (if you are testing with your own monitor, this may not be necessary)
Carnitine, Free, and Total
Uric Acid
Vitamins A,D,E
Zinc
Selenium
If on meds, Anticonvulsant medication levels
Check with Dietitian/Dr. on: Acylcarnitine Profile, Quantitative

Optional
Vitamin C
Copper
Vitamin B12, folate
Ferritin
Iron Saturation/Binding Panel
Clotting screen

Notes on Autumn’s Labs:

Make sure to give a Vitamin D supplement, especially if you live in the northern part of the country.

Autumn’s neutrophil levels and platelets have tended to run on the low side on the diet. Some research literature suggests that that is a side effect of the diet. We were quite concerned so we did take her to see a pediatric hematologist, and although he did not know why, he felt the diet was probably causing the lower levels. Her over health has been excellent so he was not concerned.

We always kept an eye on the TC02 and Anion gap as that was an indeiation of acidity in the body. When those numbers were off, we made sure Autumn was drinking baking soda daily to bring the acidity down.

The faithfulness of taking these vitamins daily have lead to some of the best lab work since she has been on the diet – and it has been almost 22 months!

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As with all things in life, it is the daily discipline in all the small stuff – taking the vitamins, exercise, daily watching what you eat, how much money you are spending, brushing your teeth, watching your tones and attitudes – daily – that often pay off big dividends over time. Yes, it can be boring, wearying and tedious, but…. 

“Do not grow weary in well-doing, for in due season you shall reap, if you faint not.” (Galations 6:9)

“He who is faithful in the little things, will be faithful in much.” (Luke 16:10)

“A man reaps what he sows.” (Galations 6:7)

“Sow a Thought, and you reap and Act;

Sow an Act, and you reap a Habit;

Sow a Habit, and you reap a character;

Sow a Character, and you reap a Destiny.”

The diet that helps build a Destiny 😉 – Keto Joy!

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“Munch-Time” Sandwiches – No bread required!

One of Autumn’s favorite super-quick meals that she has for lunch or dinner are salami “sandwiches.” Hormel has an all natural, nitrate/nitrite-free brand. Now, I know “Natural” does not necessarily mean “perfectly free from anything bad,” but hey, it is a step in the right direction.

So, here you go: Salami, cheese, butter, carrots, lettuce, cream – with chocolate drops if you like, and either coconut or fish oil – oh, and a bit of mustard – it is missing from the picture, but you gotta have a bit o’mustard to with that salami. 🙂

(Click on “Recipes” tab for exact measurements)

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First, measure out ratio requirements of all ingredients:IMG_0311

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Then, spread the butter unto the salami and put together a sandwich:IMG_0315

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Add a glass of milk, which is cream mixed with water, yes she gets the yummy creamy stuff – add a few drops of chocolate – or any other flavor if you like.

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For the added fat needed (depending on your keto-ratio) you could add more cream, use some mayonaise or add some nuts.  I am a big proponent of getting in oil at every meal – and Autumn actually prefers oil to mayo  – which is fine by me. Sometimes we do coconut oil, sometimes cod liver – the health benefits are super with either. She just takes the oil right off the spoon before eating. 

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And then it’s “Munch-Time” 🙂

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Keto-Joy!

Joy, in Blood Draws?

Well…yes, no, and sort-of 🙂

I will say this, Autumn out does all her brothers – and her dad, when it come to getting poked with a needle!

When Autumn was first hospitalized trying to get her seizures under control, there were lots – and I mean LOTS – of blood draws. There were IVs that would not stay put and veins that exploded. 

Last week, Autumn went in for her usual 6-month lab workup.  There are a great deal  of tests to run, which means MANY viles of blood to be taken.  Autumn has never been able to make it through the blood draws without fear and crying.

As we entered the lab room, she just looked at all the tubes and her “hurting eyes” then looked up at me.  I just looked at her and said, as I always do, “Hey, you are going to do great, it will be all over in just a few minutes.” There are usually about three nurses in the room to help, and once again the great staff at Dekalb Memorial Hospital did all they could to get her through.

We settled in the chair, they put the tourniquet band tightly around her arm, she buried her head into my side and the needle went in.

Autumn was silent. Not one tear! She even smiled at the end instead of being in her usual heap of tears!  The whole room was filled with smiles!

I really wished I had had a camera – it would be felt so much more if the pile of blood viles next to Autumn’s smiling face could be seen.

Yesterday, as I was reviewing the results of those tests, I realized some were missed – ug, I had to tell Autumn we needed to go back again in the morning.

So, this morning at around 7:00 am off we went in the -14 degree, bone-chilling winds and ice-covered roads to the hospital lab.

We went in as usual, settled in the familiar chair and Autumn nestled in next to me. The nurse found the vein she was going to poke and then put the needle in – except this time she was having some trouble getting the blood to come out – even though the needle was already in Autumn’s vein- so she was having to move the needle around in the vein.  Autumn did not move. The nurse called for help, but then, thankfully, the blood started flowing into the tube – whew, I could breathe – and so could Autumn.

And you know what?  Again, not one tear from Autumn. And yes, she even smiled, again! To the prize drawer she went where she picked out a pencil covered with hearts and an eraser.

My prize was in my heart. 🙂  We are coming up on almost 2 years on the diet and she keeps persevering through it all. 

I know I have mentioned it before but, “Consider it pure joy whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be perfect (mature and complete), not lacking anything. (James 1:2-4)

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Time…it changes things…keep pressing on!

“Those who sow in tears, reap in joy.” (Psalm 126:5)

“Keto-Joy!”

Berry Stylin’ with PB & J!

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There are probably more carbs in one traditional peanut and jelly sandwich than what are allowed in an entire week on the keto diet –  BUT that doesn’t keep Autumn from enjoying one!  This recipe once again comes from Dawn Martenz’ Keto Cookbook. We just quadruple the recipe and bake it in a pan instead of putting into muffin cups, although when we first started the diet we always used muffin cups – do what works for you!

Here are the ingredients for the bread/muffins:

(Click on “Recipes” tab for exact measurements.)

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You can with use either Whole Ground Flaxseed Meal or Golden Flaxseed Meal. 

IMG_0294Measure out all ingredients.

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IMG_0306This shows 2 quadruple batches. Put in 35 degree oven and bake for approximately 15 minutes

Once cooled, cut the bread into small squares and weigh the entire amount:IMG_0348Weigh the entire bread amount and then divide by 4 to get weight for 4 individual portions. Measure that individual amount out and place into  a small ziplock bag:

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Place all your bags in a container and store them either in the refrigerator or freezer. Whenever you are going to make a sandwich just take a bag out to thaw for a bit before using. 

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Ok, so when you are actually ready to make a good old peanut butter and jelly sandwich, here is what we do:

Measure out the peanut butter and butter and mix together:

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IMG_0020Then spread it evenly on your bread – although Autumn often licks quite a bit from the spatula before it makes it on to the bread 🙂

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Then measure out your fruit. A note here: You can use whatever fruit you like – just check your amounts in the ketocalculator. You will see a picture here of measuring out blueberries. However, she often takes raspberries and stirs them up with a pinch of stevia to make a jelly – see the very first picture at the top of this post.  You can use either fresh or frozen berries.

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And its Keto Joy PBJ ala blueberry style…

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Or Raspberry style!

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Keto-Joy stylin’ all around 🙂