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Good Morning

One of the first and worst side effects of anti-epileptic drugs was when Collin stopped opening his eyes. We didn't see them for a full month. At five months old, I could only tell he was waking up when his breathing became more agitated.

This morning, when we pulled back his Star Wars blankets, Collin stretched luxuriously, yawned his loud old-man-yawn, and then opened his eyes. I found myself awed all over again as he scanned the dim room for his parents.

Collin's vision is far from precise and he still keeps his eyes mostly closed a lot of the time, but the magic of this little morning miracle reminds me of how far he's come.

Story Time

This is the story of some glucose strips. That we need. But cannot get.

Because Collin is on the ketogenic diet, we monitor his blood glucose and ketone levels daily to ensure his health and safety. This is especially crucial during times of illness, not only because blood levels can go awry during sickness, but also because those blood levels provide a valuable clue to us as to what may be going on. So, glucose strips would have been particularly useful during Collin's mysterious illness earlier this week. Too bad we didn't have any.

We have used the same glucose strips for five years. However this year, our insurance company (which has also been the same during those five years) decided that it now had a 'preferred brand', which was not the one we use. I'm sure this move had nothing to do with any kind of financial deal struck between the two companies.

However, you can't use different brands of strips in the same monitor. So we would need to get a new monitor. Except the new monitor doesn't support ketone strips. Which are nonnegotiable. 

So we need the dreaded 'prior approval'. This requires the doctor's office to call the insurance company and simply say, "Collin needs to stick with the strips he's using because he also needs ketone strips for medical reasons." That's it.

I won't bore you with the dozens of phone calls or the multiple failed faxes or the truly impressive passing-of-the-buck by various people. I'll just say this: no one can seem to manage it.

So that poor box of glucose strips sits languishing at the pharmacy, a few feet away from where I stand when I go discuss things with the pharmacist regularly. I could take them home for a mere $200, but I have this crazy idea that the insurance company who has been paying for them for five years should continue to do so. 

And, make no mistake, they will.

The Hassle of Keto

Monday, I offered my assessment of the financial cost of the ketogenic diet. Today, I want to explore a much bigger consideration: the hassle.

 I can find olive oil in most places, but I can't go anywhere without a gram scale.

I can find olive oil in most places, but I can't go anywhere without a gram scale.

It's important to note where I'm coming from here. Collin uses a g-tube to eat, so palatability is not a huge issue for us. His diet is blended from whole foods and is dairy free, grain free, and soy free.

So, let's start off by calling it like it is: the ketogenic diet isn't easy. Here's why.

1. The food. Every meal and every snack on the ketogenic diet has to be precisely calculated and then precisely measured. There is very, very little leeway.

2. The time. All food takes time to prepare, I get that. But the calculating and the measuring involved in this diet really adds up. Then there's the matter of time windows. Meals need to be completed within a certain amount of time so that the body metabolizes the food in its proper ratio. Meals and snacks also need to be spread out over a proper amount of time to keep blood ketones level.

3. The complications. Various blood and urine levels have to be checked regularly to make sure the diet isn't having any adverse effects. You need special IV fluids when you're in the hospital. Managing illness on the ketogenic diet is one of the more complex things I've ever tackled. The list goes on.

4. The lack of flexibility. For us, there is no Hey, let's change our plans and stay out longer. If Collin's food isn't with us, we have to go home. Twice in his entire life, we have extended a trip, and then only because I had packed a gram scale and so could cobble something together without a Vitamix. 

But. But. But. 

The hassle is 100% worth it. And it's our normal. We rarely think about the hassle and, when we do, we realize that we have the far better side of this tradeoff. 

The Cost of Keto

Today is International Epilepsy Day. Collin was first diagnosed with Infantile Spasms, a catastrophic seizure disorder, on June 23, 2009. He was four months old. 

Collin's seizures have been completely under control for over five years now, which is something that still makes me shake my head in wonder. Even more amazing is that he hasn't taken a single anti-epileptic drug in those five-plus years. His medicine is food

Last year, Collin and I had the chance to speak to a group of physicians at a conference about the ketogenic diet, giving insight into how we implement it in our daily lives. One of the questions has stood out in my mind over the months:

What is the financial cost of the ketogenic diet? 

It's an issue that hadn't entered my mind because Collin's seizures were so bad that I was willing to do and pay anything to stop them. But I think it is important to address the financial side of this treatment. As parents consider completely overhauling their child's diet, it's natural to wonder if they will also need to overhaul their budget.

Here is my answer, based on very little science but lots of experience. It's important to note that my assessment is based on a whole foods ketogenic diet. Some kiddos use Ketocal formula, and that's a different monster, depending on health insurance and even location. 

The foods needed for the ketogenic diet are on the expensive side as far as groceries go: oils, creams, proteins. However, the diet calls for children to eat a reduced number of calories, so quantities are smaller than typical portions. Also, Collin can eat no processed foods, which cuts down on costs further. 

Some supplements make the ketogenic diet more pleasant and/or effective. Because of the high fat content in his food, Collin gets very little natural fiber, so he needs a fiber supplement. It is also difficult to get enough protein for a growing kid on the diet and studies have shown that adding amino acids can make the diet more effective, so Collin takes a complete amino acid powder. Together, high quality fiber and protein powders cost about $25 a month. Insurance does not cover these supplements, though they do cover carnitine, which most keto kids take to help with fat metabolism.

In short, the ketogenic diet may be marginally more expensive than a conventional diet. Compared to the benefits of gaining seizure control with few or no side effects, however (even if that seizure control isn't complete), the difference in cost amounts to a non-issue.

Next time, though, we'll look at an undeniable issue: the hassle of the ketogenic diet.

 

Reason to Celebrate

We took a long weekend because we needed a break, we needed some extra family time, and we needed to celebrate.

Because Collin has had seizure control for FIVE years.

Using only food and no antiseizure meds.

I always like to take a minute to let that sink in. Feel free to do the same.

When Collin's Infantile Spasms started at 4 months old, we threw everything we could at it: 

- Six weeks of ACTH therapy, which involved painful shots and all kinds of terrible side effects.

 ACTH Collin.

ACTH Collin.

- Clonazepam as a seizure control buffer while switching from medicine to medicine. This "buffer" became permanent for months and put Collin in a perpetual fog.

- Super high doses of Topamax, which robbed us of our son for weeks. He was so nauseous he stopped eating altogether. He never opened his eyes. I only knew he was awake because of his breathing. 

 Topamax Collin.

Topamax Collin.

- An extended round of high dose steroids that made him swollen beyond recognition and irritable beyond belief.

 Prednisone Collin.

Prednisone Collin.

- Vigabatrin, which we had to get from Canada, was the only medicine that had any positive effect. It stopped the spasms within days. It normalized the EEG within weeks. It felt a lot like a miracle. But we also had to have regular ophthalmologist checkups since damage to the retinal nerves is one of the risks.

 Vigabatrin Collin.

Vigabatrin Collin.

- Unfortunately, when Collin's seizures came back two months later, they changed into a form for which Vigabatrin would not work. So, we moved on to Keppra, which somehow made him both sedated and grouchy. And did not stop the seizures. In fact, they came in clusters that we attempted to treat with high doses of clonazepam.

 Keppra Collin.

Keppra Collin.

We had heard bits and pieces about the ketogenic diet and at this point, we started doing our own reading. I remember cramming in the back of our little Corolla with Collin's carseat and equipment, reading out loud to Kyle about the 66% success rate of the ketogenic diet. I stared out the window, sad and exhausted, and asked, "Why doesn't anyone know about this?". Thanks to a snowstorm that cleared out the hospital's schedule, we were able to be admitted last minute to initiate the diet in February. The day after Collin's first birthday.

It didn't work right away. Things got complicated with constipation, med toxicity, and lethargy. We tweaked for months, fought to get on a blended real food version rather than formula, and on June 21st, I sat crying in the middle of the floor, holding and rocking Collin during what I didn't know was his last seizure.

 Keto Collin, post anti-seizure meds.

Keto Collin, post anti-seizure meds.

That day feels simultaneously like yesterday and a lifetime ago. Though the diet is complicated and restrictive, those restrictions have brought us freedom. Collin turned out to be a "super responder" - one for whom the ketogenic diet is fully effective and beneficial. And we are so very thankful.