SUDEP & Ketogenic Therapies - Part 2

 
SUDEP Part 2
 
 
 
At The Charlie Foundation, our greatest hope is that people achieve seizure freedom—be it through medications, surgery, cannibidiol, or diet therapy.  The question we ask is why the esteemed authors of a recent SUDEP article would choose to censor nearly 100 years of published science, including two randomized controlled studies, indicating the Ketogenic Diet reduces seizures by at least 50% in half the people who try it, and eliminates seizures in 15-25%.
 
In March, 2017 the American Academy of Neurology and the American Epilepsy Society published their SUDEP (Sudden Unexplained Death in Epilepsy) practice guidelines.  They reported “with high confidence in evidence” that “SUDEP risk increases in association with increasing frequency of GTCS (generalized tonic clonic seizures).”  
 
GTCS, also know as grand mal seizures, are a hallmark ofmyoclonic astatic epilepsy(Doose Syndrome).
 
According to the 2009 published Medical Consensus Guidelines for administering the Ketogenic Diet, “KD should be strongly considered after the failure of two or three medications regardless of age or gender…in the case ofmyoclonic astatic epilepsyit should be considered earlier.”
 
Yet somehow the authors of the new practice guidelines fail to mention a word about diet therapy.
 
The practice guidelines go on to say, “ …having frequent GTCS, and the absence of seizure freedom, are strongly associated with SUDEP.  
 
Again, the authors chose to disregard the overwhelming evidence that after the failure of two or three medications for most non-surgical candidates, the best way to reduce or eliminate seizure frequency--and hence reduce or eliminate the chance of SUDEP--is with a Ketogenic Diet Therapy.
 
The cornerstone of health care is “evidence based medicine”-- in other words medicine that is based on science. We feel that to ignore Ketogenic Diet Therapies for medication-resistant epilepsy, especially while raising the specter of death, is unconscionable. 
 
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Vitamin D and Seizure Control

This is the 1st article in the series of topics relating to diet and nutrition for epilepsy by

The Charlie Foundation, author: Beth Zupec-Kania, RDN, CD

Vitamin D 

Vitamin D and seizure control

Vitamin D has been studied for decades for its role in many functions in the body. Known as the “sunshine” vitamin, sunshine remains the best source of receiving Vit. D. Dietary sources include meat, fish, dairy products, and, interestingly, mushrooms. People who have little exposure to the sun are at increased risk for a Vit. D deficiency. Dark-skinned individuals are also at higher risk because the melanin in their skin blocks sun penetration. Some anti-seizure medications interfere with how Vit. D is processed in the body. Supplemental Vit. D may be necessary for people who have these risk factors to maintain normal blood levels.

Vitamin D is essential to develop bones during the growing years, and, to maintain strong bones through adulthood. It’s also important in brain development and growth of new brain cells. Research in animals has shown that Vit. D may play a role in seizures. A study published in 2012 showed that correcting Vitamin D deficiency reduced seizures in people with epilepsy. In this study that included 13 people, only one had a normal Vit. D. level, the others were low or deficient. All were provided with Vitamin D supplementation based on their blood levels, and, were checked during the study to make sure that they normalized and didn’t become toxic. Seizures were recorded 90 days prior to supplementation and 90 days after. Ten of the13 subjects experienced fewer seizures with supplementation. Two of 13 experienced more seizures, and one had no change. In addition, 5 of the 13 experienced a 50% or greater reduction in overall seizures from baseline. Although this is a small study, it is important in that it identifies a major vitamin deficiency that plays a role in seizure control.

In addition to potential seizure control, there is preliminary evidence that Vit. D may also play a role in Sudden Unexpected Death in Epilepsy (SUDEP). In a large Cardiovascular Health study of 2300 people, sudden cardiac death was twice as high (2 vs. 4 deaths in 1000 people) as in those with Vit. D levels below 20ng/dl than those with levels above 20ng/dl.  

The Charlie Foundation recommends that everyone who has epilepsy have their 25-Hydroxy Vit. D level checked. This is a chart that compares levels.

Vitamin D Levels – 25 Hydroxy D

Deficient

Optimal

Toxicity

<25ng/ml

25-80ng/ml

>80ng/ml

 Multiply ng/mL by 2.5 to convert to nmol/liter      Source; Mayo Clinic

References:

Hollo A. et.al. Correction of vitamin D deficiency improves seizure control in epilepsy: a pilot study. Epilepsy Behavior (2012) 24:131-3.

Drechsler C. et.al. Vitamin D deficiency is associated with sudden cardiac death combined with cardiovascular events and mortality in hemodialysis patients. Eur Heart J (2010) 31:2253-61

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SUDEP & Ketogenic Therapies

SUDEP Image

In March, 2017 The Educational Journal of the International League Against Epilepsy (ILAE) published a paper entitled: “SUDEP: what every neurologist should know”. In it they write:

“SUDEP risk increases with less well controlled epilepsy.”
“There are currently no established evidence based prevention strategies.” 

Though the ILAE makes strong suggestions that medications and surgery may decrease chances of SUDEP, there is not a single mention of Ketogenic Therapies. This despite nearly a century of overwhelming data, including two randomized controlled studies, documenting that a Ketogenic Diet reduces seizures by at least 50% in 50% of the people who try it; and eliminates seizures completely in 15-25%.

According to the ILAE: “By far the greatest clinical risk factor for SUDEP is frequency of generalized tonic clonic seizures.” So, if you reduce tonic clonic seizures by 50% with diet, you reduce the chance of SUDEP by 50%. If you eliminate these seizures with diet, you eliminate the greatest risk factor for SUDEP.

Why then did the ILAE fail to mention the Ketogenic Diet?

It is noteworthy that in their disclaimers the authors of the ILAE paper disclose they receive benefits from pharmaceutical companies UCB, Eisai, Janssen, Lilly, Servier, Astra Zeneca and Neuro Sigma among others.

Please watch this video of Jeff Buchhalter MD PhD addressing an alternative point of view regarding the relationship between the Ketogenic Diet and SUDEP. 

In addition to reviewing further articles on SUDEP, we’ll be posting a series of diet and nutrition topics with evidence of benefit for people with epilepsy. Stay tuned for the next post about how Vitamin D can improve seizure control.

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The Charlie Foundation’s commentary on The American Heart Associations’ recent criticism of dietary fats

Author: Beth Zupec-Kania RDN, CD Consultant for The Charlie Foundation.

Dietary fat has endured a long history of controversy in its role in health. Saturated fat, found predominately in animal products (butter, cheese, cream, meat fats), and, in coconut oil, have been villainized as “bad” fats. Newer research is turning the tide on this old way of thinking.  A 2015 systematic review found no association between saturated fat consumption and risk of heart disease, stroke, diabetes, or death (1). An even more recent review of randomized controlled trials concluded that replacing saturated fats with mostly polyunsaturated fats is unlikely to reduce coronary heart disease. This 2017 review showed that inadequately controlled trials that were included in earlier meta-analyses explain the prior results (2). Despite these recent findings, the American Heart Association continues to tout the old data. It’s important, however, to understand that their reference to fat is in the context of a high-carbohydrate diet. Ketogenic and modified ketogenic diets have a completely different effect on metabolism. Emerging data from several sources reveal that low-carb, high-fat diets are effective in improving metabolic syndrome (3-5). Metabolic syndrome is the name for a group of risk factors that raises your risk for heart disease and other health problems, such as diabetes and stroke. Coconut oil is a safe fat to include in low-carb, high-fat diets. Its shorter chain length makes it easier to digest then long chain animal and vegetable oils. It also contains antibacterial properties which is helpful for the digestive tract. While coconut and palm oils found in processed snack foods are undoubtedly unhealthy, pure coconut oil has been used for decades in epilepsy. The MCT oil diet, originated at The Mayo Clinic consists of 60% MCT oil – a concentrated form of coconut oil. Not only has this oil been helpful in treating epilepsy, it has recently shown to be beneficial for brain health (6.7).

The Charlie Foundation encourages you to have regular cholesterol and lipid testing, including particle size, during ketogenic diet therapy. The particle size is important in understanding cardiovascular risk. Ketogenic diets often increase the large-sized LDL which is thought to be protective against heart disease. We also advise including monounsaturated fats such as extra virgin olive oil and avocado oil daily in the diet. These unique monounsaturated oils contain several vitamins plus the essential omega-3 and 6 fats.

Note- This commentary was written in response to this advisory from the AHA.

References

1. de Souza RJ et al. (2015). "Intake of saturated and trans unsaturated fatty acids and risk of all cause mortality, cardiovascular disease, and type 2 diabetes: systematic review and meta-analysis of observational studies". BMJ. 351 (h3978).

2.Hamley, S. (2017). "The effect of replacing saturated fat with mostly n-6 polyunsaturated fat on coronary heart disease: a meta-analysis of randomised controlled trials". Nutrition Journal. 16 (1): 30. PMID28526025. doi:10.1186/s12937-017-0254-5.

3. Volek JS et al. (2009)“Carbohydrate restriction has a more favorable impact on the metabolic syndrome than a low fat diet.” Lipids. 44: 297–309. 


4. Sharman MJ. (2002). A ketogenic diet favorably affects serum biomarkers for cardiovascular disease in normal-weight men. J Nutr 2002; 132: 1879–1885. 


5. Volek JS, et al. (2005) “Modification of lipoproteins by very low-carbohydrate diets”. Journal of Nutrition; 135: 1339–1342. 


6. Chang P. (2015) “Seizure control by decanoic acid through direct AMPA receptor inhibition.” BRAIN. doi:10.1093/brain/awv325.

7. Fernando W.M.A.D et al. (2015) “The role of dietary coconut for the prevention and treatment of Alzheimer’s disease: potential mechanisms of action.“ British Journal of Nutrition. doi:10.1017/S0007114515001452. 

Reviewed 6/28/2017, Dawn Martenz

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Most Frequently Eaten Meal...

Most Frequently Eaten Meal...

This is a super fast meal that can be eaten anytime of day.  Sometimes the eggs are scrambled, sometimes they are fried, I even microwave them if I'm in a huge rush.  The side fruit or vegetable is interchangeable and depends on what is currently available!

Of course, part of the ease in preparation comes from taking oil in syringes. Learning how to consume oil in this method allows for ingredients to be eaten plain (as many people like), not swimming in fat. This is a skill that is best learned slowly using small amounts of oil to start with.  Overtime, people master this technique and are more easily able to consume the fat.  You could swap some oil out for cream, mix some of the oil (or even mayonnaise) into the eggs and scramble them, but most likely you will have to have some oil or fat on the side if you are at a higher ratio.

288 calories (will vary slightly depending on the fruit or vegetable)

3.5:1 ratio

Ingredients

10g coconut oil

10g olive oil

5g butter

50g raw egg (usually 1 large egg is about 50g)

40g raw tomato

OR

Replace the tomato with any other fruit or vegetable of your choice.  Keep the egg, oil, butter measurements the same and write down the different amounts of fruit or veggies needed to replace the tomato on the same card.  A few examples:

26g blackberries

23g strawberries

31g baby-bella mushrooms

32g asparagus

Directions

Pan fry the egg in the butter. Scrape all of the butter out of the pan on to the top of the egg.  Serve the tomatoes on the side, cut in half and sprinkled with salt and pepper.  Serve the oil in 2 10ml syringes.

Notes

You can include some of the fat in the egg if you scramble them.  50g of egg will hold about 10g of oil plus some cream if you are using it.

Some vegetables are great if they are cooked in the egg like an omelet.  Spinach, mushrooms, peppers and onions are all good options.

In the background, you see un-sweetened decaffeinated black iced tea.  Use only decaffeinated tea for ketogenic diets! Tea is a great source of many antioxidants and is considered a "free" beverage.

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Epilepsy & The Ketogenic Diet at School

Epilepsy & The Ketogenic Diet at School

My mom, Arlene, has been a Registered Nurse (RN) for almost 40 years.  Through her career she has worked in the OB/GYN, Pediatrics, Med Surgery, Oncology, and Dialysis.  For the last 16 years she has been the school nurse in the same elementary school where I attended as a kid.  During her time in school, she has experienced a vast range of medical issues in her students including blindness resulting from a detached retina, scoliosis,  brain tumors, "lost" erasers in noses, severed finger tips, leukemia, bone fractures and even seizures. There have been two kids treated with the ketogenic diet come through her office as well. My mom has an interesting and uncommon perspective of seeing the diet work! Her answers to the questions below are in italics.

Please note that I am not providing any medical or legal advice in this post.  I am sharing personal tips and links to other information that I have found to be helpful!  Everyone's situation is unique and will require your own personal research and education before implementing the ketogenic diet at school.

In General, what are the most important pieces of information you need from parents?

BEFORE or ON the first day of school, you need to have:

1. Current contact information for emergency and non-emergency events.

This means have correct and current phone numbers for parents and emergency contacts for home, work and mobile phones.  One of the biggest problems can be contacting a parent when needed. On average it takes me 5-6 phone calls to reach a parent or caregiver.  For emergency contacts, make sure the person(s) listed is aware they are an emergency contact and they are LOCAL, not grandparents 5 states away!  Fill out and return the school emergency card immediately!

2. Required Medication WITH Dr.'s orders.

For medication that needs to be taken on a daily basis while at school, most of the time it requires forms from your school or state to be filled out by the prescribing physician with the name of the medication, reason for taking, and instructions.  It is also important to list possible side effects the medication can have.  Make sure the orders on the form match the instructions on the bottle!  Sometimes doses are changed over the phone and prescriptions (instructions) are not updated.  Make sure this is fixed before school starts.

Some states allow health offices to administer Children's Tylenol without parental/caregiver consent.  If (in the case of the ketogenic diet) you do not want this to be given, you need to opt out or specify not to give it in writing.

ALL medications in school, even over the counter (OTC) vitamins and supplements require Dr's orders.

3. Make sure EMERGENCY medications are in the health office WITH Dr.'s orders.

This includes inhalers, epi-pens, and Diastat type medications.  Even if there has not been an asthma attack, seizure or any other known acute medical event in a significant period of time, it is best to keep emergency medications in the health office in the case of a life threatening medical event.  The school health office is NOT a mini hospital, during a life threading medical event, the nurse or health aid will administer emergency medication if provided and call 911.

Here is some specific information on the laws regarding the administration of emergency medications in school settings.  Please know that currently, there are NO states that prohibit the administration of rectal medication with proper written orders.

Here are some helpful printables to provide to your health office.  Keep in mind that there will be a substitute nurse from time to time. It is best to provide very clear instructions on how to administer emergency medications.

How to administer Diastat

How to administer Intra-Nasel Medications (Versed, Midazolam)

Now onto the ketogenic diet specifically.  What accommodations were made to help maintain it properly at school?

When the student was first started on the diet, she chose to eat lunch at a small table in my office when she was having a rough day or just needed a break from the busy cafeteria. This also was to provide extra supervision to make sure meals were eaten properly.  We also provided refrigeration for cream and food.  She had access to a microwave if meals needed to be heated.  Eventually (by 5th grade) she ate lunch in the cafeteria everyday with minimal supervision.  In 5th grade she was also weaned off the diet, her whole class celebrated with her, they all ate a Jello cake!

There was always a "special treat" stored in the refrigerator for birthdays and class parties.  In her case it was usually sugar-free Jello and heavy cream. A "free" flavored popsicle is also a great option since it will last a long time in the freezer.  If your school has a "No Food in the Classroom" policy, this issue will be much easier to deal with.

Eating lunch and snack at school is usually the biggest concern regarding the ketogenic diet.  You may even have to adhere to a "nut free" policy if your school has one.

1. Pack meals that are easy for your child to eat.  I personally prefer all-in-one meals for school, such as cheese crackers, crunchy chicken salad, yogurt, mac & cheese, scrambled eggs & cowboy sushi type meals.

2. Try to avoid sending cream to drink as part of the fat, too often it is spilled or not finished.  If you do use cream, ask to keep extra in school with instructions on how to deal with spills.  You will also need to provide a scale to keep at school.

3. If eating a keto lunch in the cafeteria is too stressful for your child or causes too many problems, ask for an alternative location to eat lunch.

4.  Make sure the aids or teachers understand the importance of finishing meals and scraping bowls clean.  Ask to stay for lunch during the first week of school to help train them personally.  If you are unable to do this, make sure it addressed in meetings prior to the start of school.  A reminder note in the lunch never hurts either!

Did the student have a 504 plan or IEP?

Where we live, a 504 plan was not needed to have her needs and accommodations met.  The ketogenic Diet team provided written Dr.'s orders stating that the diet was a medically necessary treatment for epilepsy and that she needed to eat only the food provided by her family.  It also stated that she was never to eat anything that was not packed in her lunch.  Her team was not concerned with topical items like glue, play dough, lotions and soaps, so this was not a problem. If this is a concern, a 504 plan may be needed.  She did not have an IEP because she was not a special education student.

For help understanding 504 plans and IEP's please click HERE.  To sum it up, a 504 plan is a plan written to ensure accommodations are provided for ALL disabilities to ensure the student has the "least restrictive environment" for learning. These can include anything from a ramp for a wheelchair, a nut free table/classroom to providing an Aide.  An IEP is only needed when a child meets the requirements for "Special Education".  It will include very specific educational goals and accommodations such as special education classes, devices, programs and even physical accommodations.

The bottom line is: 504 plan is to ensure accommodations are met for any type of physical disability.  An IEP is for special education students only.  IF the special education student also has physical disabilities, accommodations will be written into the IEP.  The IEP will over-ride the need for a 504 plan.  Only ONE type of plan is needed and this depends upon your specific needs and district guidelines.

Laws vary GREATLY from state to state and even from county to county.  Here is a great link to State guidelines for School Health Services in EVERY state.  Educate yourself on what your child is entitled to receive at school!

 

Her is a link to a WONDERFUL, easy to understand document from the USDA.  It clearly describes the guidelines for Accommodating Children with Special Dietary Needs in the School Nutrition Programs.  You should print this and bring it to school meetings!  It provides ideas on how to make accommodations, how to find funding for the accommodations and what should and should not be provided by the school. Thanks Tina for passing this along!

Were there problems with compliance from the student or teachers?

There was never any compliance issues from the student at school.  She tolerated the diet very well and did not try to cheat in any way.  Interestingly, it was the teachers who were a little more skeptical at first.  For this particular student, she experienced seizures at night and while waking up.  Since the teachers never saw any seizure activity, it was hard for them to understand the desperation of the family to control a problem which they could never see.  It's not that they didn't believe she had epilepsy, but it was the first time any of them had ever heard of a dietary treatment for epilepsy.  After some education from both the parent and the ketogenic diet team at her hospital, there were never problems with compliance.  

For educational materials, Ask your keto center if they offer anything specifically geared towards school professionals.  The Epilepsy Foundation has a good overview of the diet.  Click HERE to view the information.  I always recommend printing educational materials and to include them with Dr.'s orders. 504 plans and IEP's.

Here is a child friendly overview of starting the ketogenic diet from Matthew's Friends.  This breaks down starting the diet in very simple and easy to understand terms.

Also from Matthew's Friends (Although Matthew's Friends in based in the UK, the information is still applicable to the US!)

Overview of the diet

Managing the Diet in School

What are the steps to a smooth, happy school year?

During the summer, before the start of school:

Schedule an appointment with your child's doctor.  Bring the school forms with you to be completed by the doctor.  Make sure prescriptions are written correctly!

Gather all of your educational materials and medical documentation needed to support your requests for accommodations in school.

Make sure daily and emergency medication prescriptions are filled and properly labeled in their original containers.  Some insurance companies will grant a "vacation request" and refill a prescription earlier than usual.  This is a good way to make sure there is adequate medication at home & school.

To prepare for 504 or IEP meetings:

Know what your child is entitled to receive in school.  The more you educate yourself on school law and policy, the more smoothly your meetings will go.  Contact a state education advocate before the start of the school year if you have questions.

Here is a link to the U.S. Department of Education, Disability Discrimination page.

Make a list of accommodations, large and small that you want to be included in your child's plan.  Imagine what your child will be doing through on a daily basis at school.  Think about things like supervision in the bathroom, help opening containers at lunch, supervision while eating, notice of parties or food based lessons well in advance, and possibly even notice of lessons where contact with topical ingredients (play dough, rice, oatmeal, glue, ect..) may need to be considered.

By the FIRST day of school:

Return Emergency contact cards to the health office!

Make sure all medication is in the health office WITH Dr.'s orders.

Make sure your seizure care plan is written the way you want it.  Specify EXACTLY when to give emergency medications and when to call 911.  It may be your schools policy to call 911 after administering emergency medications.  If you are able to meet the ambulance at school before they leave, you may be able to decline going to the hospital.  If they leave before you get there, the school may have to follow certain rules that require the child be transported to the ER.

Most importantly, the school nurse or aide is the person who is responsible for taking care of your child's medical needs while they are at school.  It is important to build and foster a relationship with this person based on FACTS, education, patience and understanding.  It is important to do your part first!  Gather all of your required paperwork and fill it out properly.  Be patient and well prepared when you are first describing the specific requirements of the ketogenic diet. It may take time for the school team to learn about the diet and figure out how to incorporate it into a 504 plan or IEP in a way that works for everyone.  Yelling and threatening a school team usually leads to more frustrations and resistance!

Keep in mind that everyone already has their eyes set on the SAME GOAL: to educate your child! It can be complicated in the beginning of the year, I have experienced accommodations that I thought were NOT what I wanted or asked for.  After giving them time, I saw that the educators really do know what they are doing and make decisions based on years of experience and success.

I hope you all have a happy and UN-eventful school year!  Please send me your school tips, I would love to hear other suggestions! This email address is being protected from spambots. You need JavaScript enabled to view it.

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Creamy Vegetables (a method of serving fat)

Creamy Vegetables (a method of serving fat)

When we were at the 4:1 ratio, this was a method that I came up with to combine a large portion of fat with a vegetable,  the goal was to visually "bulk up" a meal.  The amount of vegetables can sometimes look incredibly small sitting on a plate, trying to serve 15g of carrots in 11g of butter has resulted in meal refusal on more than one occasion in our house.  This is intended to be a side dish to be served alongside a protein.  This recipe is very flexible, you can use any vegetable or seasonings you like.  You will have to enter (into the ketocalculator) the needed ingredients of this recipe + a protein and possibly extra fat to meet individual needs.  I almost always used this on nights when the oven was already on, I have cooked it at many different temperatures, it has always turned out ok!  Don't be afraid to change the proportions of cream, egg and butter.  As long as the egg is included, it will cook up just fine.


171 Calories

6.23:1 Ratio

 

Ingredients

20g heavy cream, 40%

11g butter, melted

15g steamed carrots, mashed very smooth

7g raw egg, mixed well

pinch of baking powder

salt/pepper

Directions

In a small oven safe bowl, mix all of the ingredients together.  Cook this in a water bath, this will prevent the cream from burning.  Find a second oven safe dish (like a 2 cup Pyrex dish), set the vegetable custard dish inside the larger dish.  Fill the space between the two dishes with very hot water.  Carefully place both dishes in the oven and bake until the top has puffed up.  For the amounts listed above, the quantity will be about 1/4 cup serving.  This should take about 15 minutes in a 350 degree oven.

Notes

I usually serve some type of vegetable with dinner so I would cook a small portion plain to use for this dish.  Chop the cooked veggies very small and mash them with the back of a spoon in the dish you would cook them in.  I never have a large quantity of pureed vegetables on hand to make this.

I would save the extra eggs from scrambled eggs in the morning for a dish like this.  I keep extra egg in a small cup like this.  If I start to build up a supply of extra egg, I'll stick it in the freezer!

You could use pureed baby food vegetables if you prefer.  You would have to change the calculation to include pre-made baby food.

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