Category Archives: Ketogentic Diet

Hope

26 Thursday Sep 2013

Posted by Amy in Doose Syndrome, Ketogentic Diet

≈ 6 Comments

Jeremiah 29:11 is a popular and often quoted bible verse : 11″ For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

It has been a favorite of mine for many years, not just standing on it’s own but in the greater story of scripture. It is God’s promise to fully redeem his people, it is told to them in the middle of a terrible circumstances and scripture records that God does ultimately fully save and redeem. It became especially significant yesterday when Chuck came home and reported something really awesome!  Below I have copied and pasted Chuck’s Facebook post to one of our Ketogentic Diet groups.

I just had an amazing God experience. In addition to being a Doose Dad, I teach at the University of Kansas. One of the classes I teach is in the Leadership Studies Minor. The LSM is a group of the best and brightest from across campus, all kids who are very involved on campus and who have stellar grades. Of those we have a select group who we have in an independent study, in essence the best of the best and brightest. So, yesterday I was meeting with them going over some projects we had coming up and one girl asked if we needed a baby sitter, I said yes but our son has severe epilepsy just so she would be aware. All 4 kids said they either had epilepsy or had at least one seizure. Two of the kids had severe epilepsy, one Juvenile myoclonic – she is on Keppra, the other, Danny Sanchez, had the same thing Gabriel has. 18 years ago after 14 drugs his mom took him to a then experimental trial at Johns Hopkins for the Keto Diet. Below I link to some news stories about Danny and his mom.

I was having a hard time not breaking down knowing that this kid who was at one point having more than 100 seizures a day was not not only in college but thriving. I know it doesn’t mean that Gabriel will be able to go to college etc, but It was a powerful glimpse of hope for me.

Also, while we struggle constantly to stay up with the demands of the Diet.  Danny’s mom was doing it back in the day before computers allowed for quick calculations of precise gram measurements, and dieticians were available down the street not across the country.  All Keto Parents deserve some sort of Saint Hood, if I do say so myself lol, but Danny’s mom all the more so.

AMAZING! Thank you God for this conversation and putting these students in Chuck’s life at the right time, to have the right conversation. Not to get too theological but I believe sometimes God orchestras things perfectly for us (I don’t know or understand why everyone moment isn’t that way…maybe we just need to watch closer for His presence in our lives, I don’t know).  Beyond just the seizures Gabriel has A LOT to overcome physically and developmentally. What hope it gives us to hear of a bright college student who has overcome the same thing our little guy is fighting right now! We especially loved that this young man reported having NO memory of being on the diet! So amazing to think the burden and pain of this time will not be Gabriel’s to bear at all  🙂

Another bible verse about Hope that I love is Romans 5:5

“and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us”

Danny Sanchez Story Link 1
Danny Sanchez Story Link 2

Friends Make It More Fun

03 Sunday Mar 2013

Posted by Helen in How to help, Ketogentic Diet

≈ 2 Comments

Hey there, Figuring It Out readers! My name is Helen, and I’m friends with Amy, Chuck, and Gabriel. I’m also a blogger and photographer, so when Amy texted me one evening in January, and asked if I would bring my camera to her house to photograph some Keto Cooking and then guest blog about it, I was more than willing!

One morning, last fall, a group of us were chatting about Amy (yes, Amy – we talk about you!) while waiting for our mom’s group meeting to start. We were discussing the enormous amount of work Amy does to cook meals and snacks for Gabriel, and wondering aloud how we could help her more. Half joking, we talked about setting up an assembly line some time, to help her knock out a bunch of meals all at once. Right away we thought “hey, that’s actually a pretty good idea!”, so plans were made and Keto Cooking Nights were started.

Once a month, 4-6 friends will gather in Amy’s kitchen, and under her guidance, prep and cook as much food for Gabriel as possible. It’s a fascinating experience, that a lot of the Type-A, perfectionists especially seem to enjoy.

Foods all have to be carefully measured, weighed (down to the gram!), and cooked.

Ingredients are divided into small cups, in preparation for the actual recipe assembly. The mass quantities of cups of ingredients, reminded us all of what you see on cooking shows!

Some of the food combos look a little, uh, interesting to start. These pizzas come to mind… Low and behold, they look like mini pizzas by the time they come out of the oven!

While we’ve all admired Amy and her strength from afar, it was even more awe inspiring to be in her kitchen with her, to watch her handle a small seizure while we were there, and to watch her give Gabriel a dose of his medicines and various supplements. She handles everything with such beautiful grace and calmness; she definitely inspires us all!

If you’re reading this because you have a child on a diet like this, and people ask how they can help you, tell them a Keto Cooking Night would be helpful! And if you know someone who is living this, offer a Keto Cooking Night to them. Friends always make things more fun!

How can keto cooking become fun? Just add friends! :)

27 Saturday Oct 2012

Posted by Amy in How to help, Ketogentic Diet

≈ 1 Comment

These 4 amazing women took time away from their families to help me making brownies and pizzas for G 🙂 They came just in time too because after several weeks of minimal seizures, G has had 10 in less then 24 hours. It is such a relief to know I have enough food to feed him for a few days if I don’t have time to cook.

I wish I had remember to get the camera out earlier to take pictures of all the food they helped me make.  I am holding the remaining pre measured ingredients and they are each holding on of our precious 0.1 gram scales 🙂

I had throw away 3 scales last week because they quit working. W hen I ordered new ones I tried several different kinds. (Another little science experiment…which scale will last the longest!)

I was so excited when my friend emailed and said she would like to organize a cooking night.  Then the stress of trying to figure out keto cooking with a group set in. I’ve been able to teach several people one on one but this was the first time I would be teaching a group. I didn’t want to make anyone feel stressed out but I wanted to be sure to teach well, so we would have as few mistakes as possible.  One of the most annoying things to me about keto cooking is that if you make a mistake, you have to throw it out and start over.

I premade a big batch of brownies. Then taught the ladies how to prepare each portion. Weigh 17 grams brownie, then add 2.5 grams coconut oil, microwave for 10 seconds, let cool and package for fridge.

Chuck helped me measure out most of ingredients to make 20 pizzas.  Then the ladies and I assembled them. While one group created crusts, another group worked on dishes, so we could get the next round of crusts going.

By the end of the evening we had 17 pizzas ( I didn’t want to take the time to whip more egg whites and do more dishes to hit 20), 15 (I think) brownies and tons of premeasured macadamia nuts, parmesan cheese and chocolate for me to use in future cooking.  Aside from helping with the food, these ladies brought grown up snacks and drinks, paper goods, and great joy to my soul!

Gabriel was fascinated with the whole shebang. He wanted to be with us so badly…he would run in from the living room where he was playing with grandma,about every 20 minutes.  He would kind of watch and look around at all of us…have me hold him then leave.  So cute 🙂  I am going to think about ways he could “help” in the future.

Here he is getting ready to eat one of the pizza’s we made that night. 🙂

Before would take a bite, he pushed the plate over and said “take a picture of the pizza” 🙂 HA! I cracked up….he is so used to me snapping pictures of every new food he tries, he waited to eat his favorite because he thought I would want a shot of just the pizza.

Then he chowed down.

 

 

Not a Life Sentence!

12 Thursday Jul 2012

Posted by Amy in Doose Syndrome, Ketogentic Diet

≈ 2 Comments

We received some very encouraging news from the results of Gabriel’s genetic tests. He does not have the genetic indicator that means he will have this exact form of doose his entire life (scn1a or sociium channel- for people who like to research and learn about the technical stuff). Long story short the odds of him having stay on the ketogentic diet his entire life are very slim! Yippee! Very encouraging for the long run.

I am sure we will learn more at our appointment in September. We were able to get this information when Chuck called to get the billing figured out. (For regular readers, it looks like we will not have to pay for the genetic testing…the insurance company just needs more thorough explanation of why it was necessary for us).

We had made it 8 days seizure free when he had one in the middle of the night Wednesday. 8 days is a record since the diet, so we are counting that as a victory. We think the seizure may have happened because I had a hard time getting him to take his medicine last night and he spit most of it back out. In those cases we are supposed to redose. We think the combination of too much of one of the meds, paired with a late dinner caused the seizure last night. As always….total bummer that we had a seizure, but nice that we seem to be able to trace the causes better.

The seizure free count begins again this today….maybe we can hit 9 days this time :).

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