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IMG-4513.JPGAbby’s diet consists of 90% fat.  Fifty percent of the fat she consumes is in the form of heavy cream.  Specifically, the heavy cream she consumes is special 6g of fat per serving cream.  Most heavy cream available in stores is 5g per serving.  For comparison, whole milk (which contains a ton of carbs and isn’t suitable for the diet) is 4% fat, her cream is about 40% butter fat.    The 6g fat cream isn’t easy to come by.  Trader Joe’s sells it, but they don’t always have it.  Organic Valley and Stonyfield Farms also have a 6g cream, but only Whole Foods carries either of them regularly – and even then you have to be careful to check labels to make sure you’re getting the 6g cream.

Some independent dairies make 6g cream, but you have to contact them directly to find out.  It’s not simple.

CHOP has also partnered with WaWa to provide the special 6g heavy cram.  WaWa makes a 6g heavy cream but it is not typically available on shelves in regular Wawa retail stores.  However, for CHOP’s keto patients who live near a WaWa store, WaWa will special order the heavy cream and have it delivered to your local store weekly.  This is amazing.  It saves me having to track down the cream every week and takes some of the stress off.  Still, I was wondering exactly what this was going to cost me because this diet is *expensive* (the gram scale alone costs $200 and CHOP recommends we have two of them… fat chance!) .  Imagine my surprise to discover, upon speaking with their corporate offices, that the cream would be provided to our family *free of charge* for as long as she was on the diet.  Two quarts a week as a baseline, but if we need more, we just need to call.  If we are traveling and need to switch delivery to another store, just call.  If we need less, just call.  No questions asked (we did sign a HIPAA release so that CHOP could send a letter of medical necessity first).

We even received a WaWa Mascot in the mail!

Obviously, WaWa doesn’t get *nothing* out of the deal.  This week when I went to pick up Abby’s cream, I also picked up milk, which I wouldn’t normally ahve done at WaWa, but since I was there anyway…  And Sam was with me and he wanted orange juice, so…  It was a win for WaWa, but I still consider it a win for us.  It’s amazing that WaWa does this and I will sing their praises from here until eternity.  They also do a lot with funding programs for food insecurity and have endowed CHOPs volunteer program (they distribute complimentary beverages twice a day to the inpatient floors.  (of course, they also get to plaster their name all over the hospital as part of the deal…).  I’m still proud to say we are part of the WaWa family right now.  Every little bit helps… and this is a lot more than just a little bit!

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When Abby first got her diagnosis, it wasn’t supposed to be a big deal.   Her seizures would be simple to treat and she would outgrow them in a few years and voila!  But something didn’t feel right, so I took her to another doctor who revised her diagnosis.  Her seizures weren’t quite as straightforward as the first hospital had led us to believe and the EEG report was inconsistent with the EEG itself.  Her revised diagnosis made it less likely that she would outgrow this in a few years, though the unpredictable nature of the brain makes that sort of prediction guesswork at best.  The revision did explain why the first med wasn’t working.  So we moved to another.  And that had horrifying side effects and didn’t eliminate every seizure.  So we switched to another which wasn’t perfect but had fewer side effects and stabilized her even though it didn’t eliminate all the seizures.  But then it stopped being effective so the dose went up and up.   And then she was in status epilepticus, possibly because of medication toxicity.  So we reduced the dose of that drug and added another.  And she still isn’t seizure free and the side effects are awful.  We are now transferring her care up to CHOP, but I will admit that although I appreciate their wholistic team approach, nothing – not one thing that they’ve suggested is something that our previous team hadn’t already suggested, so it’s not like they have any answers either.

I’m not sure where along the way we started hearing about the ketogenic diet.  Our previous epileptologist ran the keto program for that hospital, but it still wasn’t something we talked about much – until recently as our options started slipping away.  I didn’t know a whole lot about it except that I had been told it was like Atkins on steroids and I knew I wanted nothing to do with it.  As a matter of fact, the way that we even broached the topic of putting her in the program was with a conversation that started with me saying, “And I know you’re ‘the keto guy’ but no way, no how am I going down that road.  NO.”  He didn’t push but did take the opportunity to discuss how it might benefit her and how we might go about figuring out whether it was for us.  And the more I learned, the less I liked it, though I was beginning more convinced that we didn’t have any other better options.  She had failed four AEDs (antiepileptic drugs), had been in status, and has seizures that are severely affecting her quality of life.  There aren’t a lot of options for intractable/treatment resistant epilepsy.

Still, I didn’t really know much about the diet and the more I learned about it, the more impossible it seemed.  A fellow at the hospital where she had a recent inpatient video EEG suggested that even if the diet didn’t cure her, it might help us get her off of one of the medications that is causing such severe side effects.  It was a compelling point, so when we went to meet with the team at CHOP about getting genetic testing and transferring her care up here, we talked about the diet.  CHOP’s program is a truly team-oriented wholistic approach that treats kids with a variety of modalities, but also addresses the issues that the whole family unit is facing while coping with the impact of epilepsy.  We all came to the conclusion that if I didn’t at least explore the option of shifting to the keto diet, then we would be doing a disservice to her.

And, so, I went to CHOP’s monthly Keto Class for parents and caregivers earlier this week  I received so much information about the diet, how the team works, how to enroll in the program, what we could expect our lives to look like.  I’m not a doctor, and I’m not a nutritionist.  I’m just a mom.   So this post will *not* be a how-to manual for the ketogenic diet.  I’m just going to give the highest level overview I can based on my (limited) understanding.  I’m not going to get into the physiology of why it works either because although I basically understand it, I’m certain I would muck up the science enough as to make it worthless.  So…. here goes…

If you do a search for “ketogenic diet” on any given day, you will find that most sites refer to a weight-loss diet that involves cutting carbs significantly so that your body goes into ketosis (the breakdown of fats in the liver produces something called ketones, which is called a state of ketosis; presence of ketones means that your body is no longer burning glucose for energy and storing fat, but is instead burning fat).  There is general guidance on these sites that suggest what your intake should be for optimal weightloss in terms of intake of fat, carbs, and proteins (macronutrieints).   However, they don’t talk about the specific ratios and restrictions of a Classic Ketogenic Diet used for treating medical conditions – most commonly, epilepsy.  We’ve known for thousands of years that fasting stops seizures.  When your body is low on intake (food/energy), it has a natural defense mechanism which allows your body to convert your fat stores to energy.  When this happens, because you’re burning fat, you will produce ketones.  In either 1921 or 1924 (I’ve seen differing accounts), Dr. Wilder at the Mayo Clinic posed the question of whether one could trick their body into producing ketones all the time without prolonged starvation.  Indeed, the ketogenic diet doesn’t starve the body of calories, it starves the body of carbohydrates, which decreases glucose and insulin levels and increases ketones as the body starts to burn fat instead.  The Classic Ketogenic Diet used for epilepsy is a medically prescribed diet.  It isn’t a weightloss plan (though calories can be restricted for optimal weightloss if the patients aren’t already at an ideal weight).  It is an extremely precise diet calculated specifically for each patient’s individual needs.  Not only is it low carb, but it is extremely high fat.

The weightloss versions of the diet that I’ve seen have recommended a 70% fat intake to 5% carbs and 25% protein (around a 2:1 ratio of fat to combined protein/carb).  The medically prescribed diet for epilepsy generally strives for a 4:1 ratio, which is 90% fat.  Because fats are so calorically dense, meals are quite small (but, I’m assured, quite filling) and it is a calorie restricted diet.  This is not about guesswork, as a weightloss diet might be.  The 4:1 ratio is precise (once stable, the ratio may be shifted to 3:1 and sometimes even 2:1).   How do you achieve that 4:1 ratio so precisely?  All food is weighed to the tenth of a gram on a very sensitive scale to ensure that the ratio is strictly adhered to.  All meals should be fully consumed to ensure no deviations from the ratio occur.  There are virtually no “free” foods, there is no “cheat day”.  It has been described as “the most restrictive medically prescribed diet to treat any condition, ever,” by medical professionals.

Why does it work?  This is where the medical/sciency stuff is not totally beyond my understanding, but is beyond my capacity to explain it to anyone else.  There’s an increase in GABA and a decrease in glutamate in the body which affects how nerve cells send signals to other cells.  There’s a bunch of magic and jargon that happens here involving synaptic functions, electrical responses, neuronal excitability and hocus pocus, bibbideebobbityboo, somehow burning fat instead of glucose equals a change in brain function.  Voilà!  The changes in the brain equal fewer seizures and more hocus pocus because sometimes it works better than others and poof, you hope she’s one of the lucky ones.

Yes, the science is all more specific than that, but I’m not a 9th grade chemistry teacher, I’m not a neurologist, and I’m not, sadly, a super genius.  I’m sure I’ve already butchered enough of the science and I don’t need the entirety of the internet shouting “SHE’S WRONG!  IT IS OUR SACRED DUTY TO CORRECT THIS AT ONCE!”

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Suffice it to say, I know it’s more complicated than all that, but hocus pocus seems like an easier explanation.

I am still in horror at the sheer amount of fat my daughter will have to ingest.  I have severe gastroparesis and fat is the enemy in a GP diet, so it’s turning my stomach just to think about it.  These kids on the ketogenic diet eat a ton of oil and mayonnaise – often just on their own – which makes me want to yak just thinking about it.  I know that my biggest challenge is to stop making “that face” every time I hear the word mayonnaise and to sell this as “look at all these delicious foods you get to eat!” but even the neurologist admitted that the diet is pretty unpalatable at first.  (However, CHOP is the only program in the country (world?) that has a “Keto Kitchen”, though.  And they brought in a bunch of culinary student interns to work on recipes, teach parents, etc.  The keto program director then hired “the best of the group” first on a part time, but now full time, basis to act as their Medical Chef Educator (aka Keto Chef).  They teach quarterly cooking classes, develop palatable recipes, and help parents adapt recipes for their kids…. overall I couldn’t ask for better support in the “palatable food” department).  Still, it’s hard to imagine my daughter eating mayonnaise or drinking straight canola oil and straight heavy cream.  But, apparently, that will likely be our reality at some point in the not-distant future.

It’s overwhelming and scary and leaves me wondering why on earth I would do this to our family.  And to myself.  My health is so tenuous some of the time that I know this will take a huge toll on me in ways that will likely interfere with my ability to focus as much as I should on the rest of the family (though sometimes that’s the nature of crisis – for years Sam got 50% or more of my attention and the three girls had to split the rest, but now Sam is pretty stable so he needs less individualized attention, while Abby is in more of a crisis state right now and takes up a great deal of my focus much of the time.  Sometimes it is Ellie, sometimes it is Tobie.  Right now I’m actually juggling several major issues at once for different kids, so it’s getting to be quite challenging).

So why would we do this to our family?  Because the alternatives aren’t great for treatment resistant epilepsy.  Let me back up and give you some statistics/information from a slide that the neurologist provided at the CHOP Keto class.

1.  Only about 0.5-1% of the population has epilepsy.  This amounts to about 50 million individuals world-wide, and over 3 million Americans. (epilepsy is defined as recurrent, non-provoked seizures)
2.  Between 60-70% of patients will become seizure free with any AED (you could pick one out of a hat), on the first try.  This means that about 30-40% will fail at least one medication.  After failing one drug, patients have only a 10% chance of the next drug working.  
3.  After failing 3 AEDs, there is less than a 5% chance of becoming seizure free with another AED.  Abby has failed four AEDs so far.
4.  The risk of sudden unexplained death from epilepsy (SUDEP) increases with every year a child has epilepsy.  The risk is further increased for children with treatment resistant epilepsy who have untreated seizures for 5 years or more (Abby has had some level of untreated seizures for nearly 4 years – we have never gotten her down to zero seizures).  

These, among other things, were the statistics that convinced me that no matter how overwhelming, anxiety-producing, or scary this massive undertaking feels, we owe it to our daughter to move forward.

And so, I did.  Yesterday I sent the email to the keto team officially opening her record to work toward an admission to start the diet.  There is a lot of homework we have to do before the admission can occur, as well as supplies we have to acquire prior to scheduling her admission.  I have already started work on some of the paperwork. Some of the work has to be delayed until our insurance change happens on June 1 (my husband just started a new job) so that we aren’t working through prior authorizations with one company and then having to start all over again with the new one when it changes over.  But the trigger has been pulled and we are moving forward.  More later on the task of completing her file for the admission process, among other things.  But … time to get back to the task of mothering.

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I haven’t been blogging for a long time – and I’m not sure whether I’m ready to dive back in or not. Nevertheless, something’s been nagging at me for months about it, but I haven’t had the energy for it. So I’ll give this a try and see where it goes. I expect a large number of entries will be password protected. The password hasn’t changed, but if you need it, email me. Note that with the exception of my husband, if you are an immediate relative, I probably won’t give it to you.

So… catching up.

Well, first the kids: The triplets are at what I consider a very trying age. Actually, it might only be Ellie who is at a very trying age. They just turned five, the whole world is ahead of them, they are learning at an incredibly rapid rate, but social skills allude Sam and plague Ellie. Abby is a naturally gifted socialite and I have no idea where that skill comes from. Not from me, that’s for sure. I worry about Ellie. She whines all the time. She shrieks. She is prone to bouts of hysterical tears – frequently. I am worried about her social development. None of the kids in her class like her (though they all adore Abby). She is frequently in tears over social issues. When she and Abby went on a playdate, I asked her if she had fun and she said “No. C and A were playing together so I couldn’t play with them.” While I don’t know C very well, I know Abby very well, and I find it unlikely that it was entirely about C & A excluding Ellie explicitly. I’m fairly certain that Ellie doesn’t know how to integrate herself into a play group dynamic of more than 2 kids. This is a frequent complaint of hers. “Well, Abby and Tobie were playing together but *I* wanted to play with Abby and I couldn’t!” is a very frequent (and tearful) complaint I hear from Ellie. I am, I admit, puzzled about the next steps for helping her through this. So I’m calling in the cavalry. I’m talking to Developmental Pediatrician Extraordinaire (DPE) tomorrow, and have a message in to the school director. Hoping to have some strategies soon.

The other kids are great. Abby draws incessantly and constantly provides me with portraits of me (if my scanner were working, I’d post an example!). Sam is thriving in the collaborative classroom that he’s in this year. He loves his teacher, but is still wary of the fact that she’s “new” – as opposed to the teacher he had the past two years. Tobie is amazing. I can’t get over her extraordinary gifts. She’s smart, funny, and interactive in a way the triplets never were at her age. I’m sure some of it comes from having older siblings, but some of it is clearly just that she’s a very different kid.

How’s the Husband Extraordinaire Doing?: Seth’s great. He started working in North Carolina in July on a year-long contract. He’s working hard, but we miss him. He leaves every Sunday afternoon and comes home late Thursday night. The job is great, but it’s hard on the kids (and me) to have him gone every week. Still, it’s a fantastic opportunity and it’s giving him some time to figure out the long-term career things he needs to figure out, without worrying in the meantime about a steady income. This week he’s in Vegas at his Annual Mid-Year conference for his field. I hope he’s having fun, because we sure miss him!

And, inevitably, me: My health hasn’t been great since I last posted. I’ve been in and out and in and back out of the hospital several times since I last wrote. I have a number of things to say about the specifics, but I’m exhausted so I think the specifics will wait for their own blog post. Nevertheless, I did get the Gastric Neurostimulator placed in October – I wish I could say it’s been miraculous, but it has not. More details later, but the good news is that I’m currently home, not in the hospital, which is a huge improvement and a great gift that I should not underestimate.

And you? How are you all doing?

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