Monthly Archives: March 2015

Refresh & Welcome the Swicks

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This week we are refreshing our blog! After almost 5 years of living with the reality of epilepsy, treatment and recovery, we are taking stock and updating our blog to reflect where we have been and where we are going.

Keto Parent Meeting. Photo credit: Amanda Cowen, Corvallis Gazette Times

Keto Parent Meeting. Photo credit: Amanda Cowen, Corvallis Gazette Times

You will notice the new look at the new name: Oregon Keto Kids. Now that Nora is almost 3 years seizure free and we are weaning her from the diet, we are turning our attention toward supporting other families as they use the ketogenic diet to overcome epilepsy. Of course, this blog is always for everyone, no matter where you live, but it is also a central part of the more hands-on support group we will form for parents who are starting the diet at OHSU Doernbecher Pediatric Neurology’s Ketogenic Diet Program. The first step is working with other families who are emerging from their journey with the ketogenic diet armed with the experience to reach out to support others.

Thus, we welcome Amanda and Jason Swick as co-bloggers at this space. Their son, Jaron, was diagnosed with Doose Syndrome when Nora was about 1 year seizure-free. They connected with us after Nora’s story was in our local newspaper. We are all grateful that our story was told and that another little person and family could use the ketogenic diet to overcome epilepsy. The Swicks are an amazing family and they are also ready to reach out and support others.

During the next few weeks I will be updating many of our main pages. I haven’t looked back at them in ages, and see how out of date they are!  It’s time to re-write Nora’s story and call on our experience to re-write the other general informational pages.

It’s an interesting experience to look back at those times, remember what we were feeling and experiencing, and to see the journey to now. We are thankful that it went as well as it did. Ted and I feel that we don’t have a lot more to say on a regular basis and are not making as many recipes anymore, so maybe we will spend some time curating the blog for the “best of” and doing some summary posts of the challenges that we faced.

Amanda will be blogging about Jaron’s experience (you can read Jaron’s Epilepsy Story now, and look for updates in the future). She also has experience with Doose Syndrome, the Keto Calculator, reflux, kidney stones, camping and more, so you will learn a lot from her experience and perspective.

Our blog-refresh plans are not done yet, so we will keep you posted as we make changes so that you can stay in touch. We are always happy and grateful to hear from other parents and supporters.

And we are looking for support! If you want to help get the support group off the ground, we will be looking for volunteers to help us get donations to buy basic supplies for families, print a welcome packet, buy books about living with food restrictions for kids, etc. We would also like to contact some of the companies that make good keto foods to get coupons or other discounts (for coconut oil, macadamia nuts, nut flours, cream, etc.) Please contact us if you want to pitch in; donations will go through the Doernbecher Foundation and will be tax deductible!

March 2015 Keto Clinic Appointment

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We visited Dr. Wray at Doernbecher yesterday for Nora’s 6-month Keto Clinic appointment. She is now 35 months seizure free and weaned to the Modified Atkins Diet. As usual, she ran through the standard clinic neurological checks and passed with flying colors.

IMG_5329Her blood and urine tests still have a few remnants of the diet that we hope will continue to resolve as we continue to liberalize her diet. Her blood acidosis level is still a little high and she still has the beginnings of kidney stones. The treatment for both of those issues are compatible and simple: plenty of water intake, and we can add some dietary citrate. I’m still doing some research into the citrate options; she already takes calcium citrate and we will have to decide if we start supplementing with magnesium or potassium citrate.

We will continue to wean her from the diet slowly by changing how we administer the diet. At this point, she is getting 40 grams of carbs per day and has no limits on protein or fat. We are only weighing and tracking her carb intake to make sure that she doesn’t exceed her 40 g limit, but we are not tracking her daily ratio anymore.

Our next step will be to estimate carb portions, much like diabetics are taught to do. Then we can shoot for an estimated 8-10 grams of carbs per meal, 5 times per day (still plenty of snacks in her day). We will give up the precision of the weighed foods, with the understanding that her carb intake will fluctuate more from day to day but will stay comfortably lower than a traditional US diet.

Nora will not see a big difference in her diet, but I hope that it frees Ted and I a little more. We have appreciated our little friend the gram scale, but I look forward to throwing together quick meals without consulting the spreadsheet and the scale first.

This is also an opportunity to start teaching Nora to feed herself. She would love more freedom and has appreciated the ability to get herself a piece of cheese anytime she is hungry. As she gets older she will appreciate more freedom, and we all need to learn healthy eating habits for our own bodies.

We have been going back to Doernbecher for check ups every 6 months, and now we will wait a whole year until we go back again, and Dr. Wray thinks that we won’t have to do those big nasty blood draws anymore! Nora is very happy to hear that news!

IMG_5310We do enjoy our trips to Portland. This time Nora wanted to go to the Japanese Gardens and brought her Japanese robe and umbrella that she got for Christmas. We also met up with another keto kid, Annie, who is moving from MAD to a higher ratio to get better seizure control. It is so important for families to support each other through this, because we have so much to give to each other that our doctors and dietitians don’t have experience to help us with: the daily grind of meal preparation and the learning curve. As we continue to wean Nora from the diet and wean ourselves from the gram scale, we plan to ramp up the support group.

IMG_4668We made it a Japanese themed day (on St. Patrick’s Day, no less, but at least we beat the crowds!). We had sushi at Masu Sushi, which felt like a fancy place but was low-key for lunch. Nora can eat edamame and sashimi until her belly is content, and here we found some dungeons crab rolls that both kids adored (Anders got the rice from Nora’s, a win-win).

After lunch we walked down to the renowned Powell’s City of Books. We found a fabulous book of Japanese folk tales, several other books picked by each kid, and a few games. Good times in the big city. Now we will have to plan to come back once and awhile just for fun.

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MADSheet – A Spreadsheet Tool for Modified Atkins Diet Administration

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We came into the ketogenic diet in a non-standard way for Nora.  We started with a low glycemic index diet for a few weeks in the fall of 2011, then to a modified Atkins diet for a few weeks, then to a 3:1 ratio ketogenic diet for a few months, and finally to a 3.5:1 ratio ketogenic diet from April of 2012 to April of 2014.  Each increase provided better seizure control.

Because we transitioned slowly into the ketogenic diet instead of the traditional 24 hour hospital induction, we had time to develop many of our own tools for tracking Nora’s diet and seizures.  When we went full keto, we continued to use these self-developed tools — mainly a Google Docs spreadsheet — with the approval of our neurologist and dietician team.  (Although we administered the diet differently, we greatly support the Charlie Foundation’s Keto Calculator, and recommend that tool for administering the ketogenic diet.)

Starting April 2014, after two years of seizure freedom, we slowly weaned Nora by decreasing the ketogenic diet ratio by 0.25 every 3-4 weeks.  In December of 2014 we finally weaned down to a 1:1 ratio.  We then transitioned to a modified Atkins diet in which only carbs are tracked (as opposed to the full suite of carbs, protein, fat, and fiber).  This greatly simplifies administration of the diet, but we still use a simplified version of our spreadsheet.

We get a lot of questions about our methods for administering the diet, and because the modified Atkins diet can be done with less strict medical oversight, we are now posting a version of this spreadsheet in case anyone finds it useful for administering the modified Atkins diet.  (For the ketogenic diet, we recommend using the Charlie Foundation’s Keto Calculator as that is a widely supported and vetted tool.)

We recommend using a tool like this if you aren’t sure you are estimating portions right, and want to learn the proper proportions of foods using a gram scale (a traditional kitchen gram scale will be fine, no need to measure to the tenth of a gram as in the ketogenic diet). We have also found it useful in weaning off the ketogenic diet, after you have been accustomed to weighing all food and want to learn how to think in portion sizes again and only count the carbs, not the ratio.

Note that the modified Atkins diet is still a high-protein, high-fat diet. You are still going for a 1:1 ratio. This spreadsheet only helps you count carbs and is not intended to help you plan full meals at a 1:1 ratio. Notice that cheese and meats are not listed (unless it is a product with significant carbs). Add protein and fats to every meal, and use the higher fat foods in the spreadsheet (labeled in green) to supply healthy fats.

WARNING
The modified Atkins diet is less demanding on the patient than the ketogenic diet, but it is still a restricted diet with potential side effects.  We strongly recommend you inform your medical care team if you are going to use the MAD diet for your child.  Low carb diets can interact with other medications, and some medical conditions are contraindicated with low carb diets and could be very dangerous.  Check with your medical team.  If your child is struggling, sick, or is continually not feeling well, stop the the diet and check with your medical team.

You can download the MADSheet (version 1) here: MADSheet-v1.

Instructions are given in the “INSTRUCTIONS” tab in the spreadsheet.  Foods with no (or very little) carbs (such as butter) are not listed in the spreadsheet as they don’t need to be calculated and weighed.  But they will still be part of most meals.  As an example, for a morning snack for Nora I would like 3 grams of carbs of apple and 1 gram of carb of 85% dark chocolate and 3 grams of carbs of peanut butter.  Using the MADSheet, I put 3, 1, and 3  respectively in cells J24, J27, and J29.  It is then calculated that I need 24 grams of apple, 3.6 grams of chocolate, and 24 grams of peanut butter.  If I were doing this for Nora I would then put an additional dollop of butter in with the peanut butter to push the ratio up a bit, but I don’t need to measure that as it doesn’t have any carbs.  (In the full keto version of the diet though, I do need to calculate and weigh the correct amount of butter along with everything else.)

Lastly, the MADSheet tool is not intended as an optimized, finished product in any way.  We do not guarantee the spreadsheet to be free of errors or bugs.  We are providing it as a template or starting point to be modified as necessary to fit the needs of the user.  Please delete foods, add foods, change and modify cells and calculations as you see fit.  Please take care to double check all calculations and formulas, especially after making modifications.  This is not intended as medical advice.  Please check all methods with your medical team.  Use at your own risk.