This past Monday I attended a Ketogenic Diet Seminar at CHOP, which is required by the hospital in order to start the diet as a part of their program. The class was presented by the entire keto team including the director of the program (who we’re actually meeting with next week), nurses, dietitians, a social worker, chef, and even a mother of a child in the program. Why would we need to start the ketogenic diet for Madison? And what is this diet? While it’s becoming more mainstream and fad-like, it actually originated as a way to help those suffering with epilepsy. The class was super informative and we’re really looking forward to getting the process started with Madison! Care to learn more? Then keep reading my friends!
What is the ketogenic diet?
Fasting and dietary regimens to help with seizures actually dates all the way back to around 500 BC! Crazy huh? It was discovered that when people with epilepsy would fast, many would see a great reduction in seizures. What happens when you fast? Well since your body isn’t taking in any food, it resorts to burning stored fat (ketones) as a fuel source instead of carbs (glucose). In the 1920s the ketogenic diet began as a way to mimic the metabolism of fasting; consuming a large amount of fat and limiting protein and carbs to force the body into using fat as it’s main source of fuel rather than carbs. This is called ketosis.
There are many variations of the diet, but I’m only going to be talking about the Classic Keto Diet because that’s what Madison will be doing. The classic version uses a 4:1 ratio, meaning 4 parts fat to 1 part protein + carbs. This means 90% of the calories Madison will eat will be coming from fat, about 7% from protein, and 3% from carbs.
Because the diet is so high in fat, portions will become much smaller than the typical American diet. I actually think this will work to our advantage since Madison has some issues with alertness and eating so hopefully meal time will get easier, although prep time will be much longer. She also need to take various supplements since many vitamins and nutrients she would have been getting from fruits and vegetables will now be very limited.
To ensure Madison is eating the correct ratio at each meal we’ll be given personalized meal plans around the number of meals/snacks she typically eats and calories needed. All food will need to be weighed on a gram scale to provide the exact serving size. So yeah, lots of work for mama in the near future! I’ve already told John I might not have time to cook for us ever again. LOL
Doctors aren’t totally sure just why the ketogenic diet is able to help in seizure reduction, but the director of the program at CHOP did explain the following. The brain has both glut and gaba receptors; glut causing excitement and gaba which inhibits excitement. People with epilepsy tend to have too much glut, causing an over excitement in the brain and in turn a seizure. The keto diet seems to increase gaba receptors which would aid in decreasing seizure activity.
Success of the diet in treating epilepsy
Throughout the world more than 50 million people suffer from epilepsy. 30-40% fail medications and become treatment resistant. Apparently if a person has failed 1 AED (anti-epileptic drug), they have a less than 10% chance at becoming seizure free with another. Failing 3 leaves a person with less than a 5% chance at finding seizure freedom. Madison is on 3 AED’s currently, and has already been weaned off of 3 others. Her chance at finding seizure freedom through drugs is far from viable at this point.
Through CHOP’s program they have found that 22% of patients found seizure freedom by 3 months, and 67% saw a greater than 50% reduction in seizures. They also observe improved sleep, alertness, attention, cognition, behavior, and overall quality of life in patients on the diet. Quality of life is a big one for us. While AED’s can and do improve the number of and severity of Madison’s and many people’s seizures, they do so at what cost? The side effects are astronomical in my mind. Leaving a child in a constant fog and inhibiting their ability to function is just as unacceptable as having to watch them suffer seizures multiple times a day. While Madison’s clarity has greatly improved because of seizure reduction, I can only imagine who she might become off of these strong medications.
Side effects of the diet
So why wouldn’t anyone with epilepsy try the diet you might be wondering? While I too feel like the natural routes should be looked at before medications, 60% of people do find seizure control on even just 1 AED, and the diet does also come at a cost.
The keto diet can be very hard on the body. A child can develop hypoglycemia, acidosis, dehydration, vomiting, lethargy, hyperlipidemia, kidney stones, GI disorders, constipation, linear growth failure, osteoporosis, and more. For these reasons it’s very important to start the diet inpatient in a hospital surrounded by a team of professionals.
In learning so much about the severity of it I personally don’t understand how so many people are simply going on this diet on their own nowadays. I imagine they’re not following the classic diet, and perhaps are doing a more modified version, but to not know whether your body is experiencing some of these severe side effects seems unsafe to me. People claim to experience a “keto flu”, and yes it is common to feel sick as your body makes such a big transition, but for all they know they could be hitting dangerously low sugars or falling into acidosis and not know it. I guess it works for people, but if you’re someone on the diet I’m super curious to know how you know you’re actually in ketosis and doing so safely? Let me know!
But anyway, I digress. Once admitted into the hospital our keto team will be watching for these side effects when it comes to Madison’s health so that we know we are in a state of ketosis and in such a state safely when we return home and continue the diet. Madison tends to have a delayed response to changes and already experiences constipation and electrolyte imbalances, so I’m a little concerned about how she’ll handle such a jolt to her body. Because of her current speech issues she’s also not taking in the amount of fluids I would like, which will also pose a big problem upon starting the diet. She needs to stay hydrated so I’m hoping we’ll have a better handle on that after her lip & tongue tie correction and through continued sessions with her new speech team. Read more about that here!
Currently we’re beginning the process to get Madison admitted into the keto program at CHOP. I was thinking we would be going in November or December, but turns out the process is not as quick as I had hoped. Now that I’ve attended the education class we have a few other steps to take:
- Complete metabolic labs to ensure Madison’s body can handle a high fat diet
- Record and submit 28 day seizure log and bowel movements
- Complete medication sheet (we’ll likely need to switch all of Maddie’s liquid meds to pill form because the liquid versions have more than double the amount of carbs in them)
- Record average fluid intake
- Complete 3 day dietary history using the gram food scale
- Complete food preference sheet
- Obtain glucometer, scale, and other supplies
Once all of the above is complete, we’ll need to schedule an appointment with the keto team no later than 3 weeks prior to possible admission date. CHOP has a “keto week” each month where they admit about 4-5 patients to the program. We’re hoping we’ll get to partake in the January group!
Madison would be admitted on a Monday on her normal diet. The ketogenic diet would begin at a 2:1 ratio on Tuesday morning, increased to 3:1 on Wednesday, and 4:1 by Thursday. We would be discharged by Friday night, assuming there were no issues. I know my daughter, and I know she will for sure experience some negative side effect to the diet, which is quite common. I’m hoping the standard 5 days will be all we need, but I wouldn’t be surprised if we wound up staying an extra day or 2.
During her stay she’ll have repeat bloodwork drawn 5x a day to check her glucose, electrolytes, and ketone levels. Once we go home we’ll be checking her blood glucose once or twice a day which will eventually become just once a week. We’ll also need to test her urine. Fortunately (yet unfortunately) John and I already have experience doing both of these because we had to check these things when she was on a high dose steroid seizure medication last year. Madison will also undergo an X-ray to check on her bone health. Aside from observing Madison during the admission, John and I will also be required to attend various educational sessions, as well as cooking classes to learn how to make keto meals tailored to Madison’s needs.
Upon discharge we would have 2 additional follow up appointments, and then another follow up at the 3 month mark in which we would deem the diet successful or not. If we see an improvement in Madison, we would begin weaning medications at this time. This of course would be a very slow process, and only as long we do not see any increase in activity. Madison’s current neurologist believes the diet will help, but isn’t sure whether or not she would find freedom on the diet alone. While I hope we can get her off all meds, I guess we’ll see how it goes! In regards to how long a person stays on the diet, well that all depends on the person! Some kids are able to wean totally off, or to a lower ratio after a few years, while others remain on the diet 20+ years! If this works for Madison I will be in no rush to get her off. Yes, it is more time consuming, but the extra time spent on calculating meals for her will be far worth it if she is no longer suffering from multiple seizures a day.
John and I have high hopes for the diet and are looking forward to getting the process started! We’re keeping our fingers crossed that we can be admitted sooner rather than later, and hope to see a positive change in our little soon to be keto guido. (Where my Jersey Shore fans at?!) If you currently have a child on the diet and have seen success I’d love to hear from you!
And if you’d like more information the Charlie Foundation is an excellent source to look into!