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.


Collin Time

Granddad getting his Collin Time and Nana patiently waiting her turn.

Granddad getting his Collin Time and Nana patiently waiting her turn.

My parents are visiting this week, so it's a phrase I'm hearing even more than normal around here:

"You'd better get your Collin Time before he has to go to bed."

"Is Collin busy? Because I'm ready for my Collin Time."

"Are you going to have Collin Time now? If you're not, I am."

And then one-on-one time with Collin commences. We will settle to all hang out in the same room as Collin or play with him together, but what we're all really craving is to have Collin to ourselves.

I remember when we were in the hospital receiving Collin's initial Infantile Spasms diagnosis, starting him on ACTH, and reeling from the turn our future seemed to be taking. Our family gathered in the waiting area and I found myself wracked with dread at having to go share the news. I felt like I was taking from them the future they had been hoping for. I wasn't sure if they would even feel comfortable around their grandson and nephew.

But once we got home, my dad said something that changed my perspective: "I don't know, I just think Collin is a special person." He didn't mean special-needs-special and he didn't mean "those"-babies-are-such-angels-special (you'd be surprised how often I get that one). He just meant that Collin has something unique to offer that has nothing to do with his diagnosis or challenges but just who he is as a person.

And even though Collin was only 4 months old at the time my dad made that observation, he was right. The Collin Time phenomenon developed soon thereafter and spread slowly outward from our immediate family. You can literally see the difference in people. The only thing better than watching someone else spend one-on-one time with Collin is doing it myself.

Speaking of which...

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.

Not Ashamed

Last week, I mentioned my death match with postpartum depression. Many of you have come alongside us more recently, so I dug up this post from Collin the Champ way back in 2009 and am sharing it with you today as written:

Many of you know quite a bit about the trials Kyle, Collin and I have endured since February, but few know the extent of the darkness we have walked through together. Between Collin's first stay in the hospital and his diagnosis of Infantile Spasms, our family faced a devastation of a different nature. I have been finding lately that it is difficult to write truly and accurately about Collin's journey and the things we are learning through it without referencing this time. So, consider it referenced.

When Collin finally came home from Children's Hospital in March, Kyle and I had very little knowledge and no medical support for helping us adapt to the feeding tube and Nissen wrap. We were only told by a well-meaning but misguided nurse to avoid 'gagging' (what we now call 'retching') at all costs, because it could break the Nissen wrap; this, in Collin's case, would mean aspiration and potentially pneumonia or death. So when, 10 days after we brought him home, Collin started to retch violently while he was in my arms, spewing milk through his feeding tube and up into the air while his face turned purple, my brain broke.

I don't mean to make light of the situation, I only mean to speak the truth. After the strain of a month in the hospital, fearing for my child's life and enduring countless tests, procedures, and surgeries, witnessing this much-feared event snapped something in my brain. I immediately started shaking and felt that I was going to throw up. I had to give Collin to Kyle and leave the room. By that night, we had determined that we should go to the emergency room, at which point we were admitted for a hellish three-day stay that determined nothing. By the third day, I was not eating, drinking, or sleeping at all. I could not stand to touch Collin and could barely look at him, yet I would not leave the room. I remember lying on the cot next to his bed planning my steps across the hall to the nurses' station to ask how I could get admitted to the hospital as soon as possible. At least there they would hook me up to an IV.

Luckily, Kyle got the name of a psychiatrist who specialized in postpartum issues and, by some miracle, got me an appointment for 2 hours later. When the minutes finally dragged by and I shuffled, hunched and shaking, out to the car and into her office, I learned that I was experiencing Acute Stress Disorder. This, she assured me, was a normal reaction to intolerable circumstances, and I would get better.

I wish I could say that that was the turning point - that knowing what was wrong helped me overcome my crippling fear and bewildering sadness. Instead, after a brief high following the appointment, I plummeted into a deep, dark postpartum depression. There are no words to describe the alternating numbness, terror, and despair I wrestled with during those days and weeks. I was consumed by irrational fears and thoughts. I woke up every morning positive that Kyle was dead. I had to talk myself into going downstairs, because I felt certain I would find something wrong with Collin when I got there. I thought I was going to die. And worse, I thought I would never be the same again.

My mom saved us by coming to live with us, because most of the time I could not even bear to be in the same room with Collin, much less care for him. I spent my time in the back room by myself watching nature shows over and over because anything with people caused too much anxiety and sadness, yet I had to have something on to keep me from losing the shred of control I was clinging to. By this time, I could barely even speak, for reasons I can't quite explain. My legs shook when I tried to walk, my throat closed when I put food in my mouth, and my body felt like I was constantly bracing myself for the next terrible thing. Yet, at the same time, I couldn't bring myself to care about the next terrible thing, because it all seemed pointless and hopeless. I won't even go into the implications all of this held for self-image and self-worth. I didn't feel like a bad mother - I didn't feel like a mother at all.

But slowly, bit by bit, and with the help of loved ones, I started to throw everything I had at this consuming monster. I got on some medication. I found a killer therapist. I got chiropractic treatment. I started to read books on postpartum depression. I wrote things on cards - scriptures, true and/or encouraging statements - and carried them with me everywhere I went because I couldn't see the truth on my own and needed to remind myself constantly of what it was. I kept a book in which every morning I wrote the things I would do to help myself get better and every evening I wrote my successes for the day. At the beginning, my goals were to drink water and go outside the front door for five minutes. My therapist taught me to celebrate every small victory, and I remember how excited everyone was the first time I ate a half turkey sandwich and how proud I was the first time I walked all the way to the corner. I like to look at the page when my main success for the day was: 'I smiled.'

Gradually, I started to sit in the same room with Collin for part of the day. I held him sometimes. The picture above is of one of the first times I held him - I couldn't stand to hold him in my arms, but I could handle having him in my lap. Then I started changing diapers. Then doing tube feeds. Then playing. Then cuddling. My mom started to go home on the weekends and Kyle and I slowly learned how to be parents in the midst of everything. Finally, we put together an exit strategy for my mom. I remember the day she pulled away for the last time. I stood at the front door, holding Collin tightly and making him wave and crying from happiness and sadness. It felt so strange to go back inside just the two of us.

I had been caring for Collin on my own for about three weeks when we got the Infantile Spasm diagnosis.

As I'm sure you can imagine, I thought twice about sharing all of this. But I didn't think about it more than twice, because I am not ashamed of it. I am thankful for the friends and family who pulled me through. I am more adoring and appreciative of my son than I thought possible. I am proud of myself for the lengths I went to for healing. But I'm not ashamed.

The Rest of the Diagnosis Story

At one point during Collin's lengthy bedtime routine Saturday, Kyle clipped the top of the lava lamp with a pillow. "Phew Collin!" he said as it teetered back into place, "That was almost catastrophic!"

And in that moment I realized that my post on dealing with diagnosis wasn't quite right, with its our-diagnosis-is-a-tool and lah-tee-dah. The things I wrote were true, they just weren't complete.

Because that wasn't our first diagnosis.

I can see myself, clear as day, in the wicker chair from the bedroom of our old house, this same laptop on my knees, watching videos of other babies doing the same, strange jack-knife move my own four-month-old baby was doing five, ten, twenty times in a row throughout the day.

If your baby is doing this, the kind, pitying description explained, calmly pack your things and go to the nearest children's hospital.

Infantile spasms, it said. A catastrophic seizure disorder.

It was a Sunday. Kyle's first Father's Day. It was shortly after my mom had moved back home, a sign that I had really survived my death match with postpartum despression. The three of us were lounging in our pajamas and I was planning on making blueberry pancakes - one of the first normal things I had dared to dream up since Collin was born. It was like I had relaxed enough to take a deep breath, but what I drew in was two lungs full of fear.

Because there's no other way to describe it. Terror. Horror. As I read in the online support groups that day about parents ordering hospital beds for their children. As I saw the looks on the faces of the technicians during Collin's EEG. As we were escorted to the emergency room straight from the incomplete EEG and told we would be staying.

Though we cried off and on for days after Collin's Infantile Spasms diagnosis, we didn't really feel the despair until later. We were too hopped up on fear to have room in our blood for good old grief. I had trouble eating. We didn't sleep well for a long time. I could feel a dark force descending on me and through it swirled unfamiliar machines and equipment and injections and medications. I braced myself for the storm, but felt sure I would be swept away.

I had no way of knowing that the contents of that storm cloud would eventually condensate and fall out of the sky over my head, that the soil of my life would soak them up. They wouldn't litter my landscape - they would be used to form it. And even though that landscape looked like an uninhabited and inhospitable place to me at that time, I couldn't have known that I would learn to be genuinely happy there. 

That Sunday was the first time I remember Kyle saying our mantra: Collin is the same today as he was yesterday. It wasn't a particularly rosy sentiment, so I was surprised at how comforting it was. The comfort came not from being easy, but from being true. I hadn't lost my ideal son. I had been loving the wrong version of him all along. My version, not his. Now I had a chance to look back and see his first months through different eyes; in a very real sense, to see what I had been missing. 

But not even these insights could penetrate the fear of those early days after the first diagnosis. It was consuming. I felt lost in it and couldn't catch a glimpse of anything through it. If only I had known there was a me somewhere out in the future who would write something like this. That she would be healthy and grateful and cheering me on.

So now, on those days that are so much harder than all the others, I imagine a me I don't know, years away, thinking and reading things I can't imagine right now, looking back on me with compassion and pride.