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Archive for the ‘The Keto Chronicles’ Category

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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IMG-4473Yesterday marked an important milestone:  Abby’s body officially begun the transition into ketosis – her morning blood ketone levels were over 2.4.  The team here looks for anything over 1.5, so she was well beyond that.  She is now, officially, a KetoKid (TM).

 

 

 

 
This was a huge and happy milestone and she earned a bajillion stickers on her sticker chart (note that each chart is for one full day):

 

sticker charts

Each time she fills out a chart, she gets a big-ish prize.  Yesterday was a fidget spinner and a barbie-knock off doll from the dollar store.  The key to keeping her engaged has been lots of positive reinforcement and as little focus on negative behaviors as possible.  The same behavior management/parenting techniques that are tried and true remain true for a keto kid.

Despite yesterday’s successes, it was still a tremendously difficult day.  In addition to the difficulties of the diet, I found out first thing in the morning that my cousin had died so my emotional reserves were toast.  Combine that with Abby having an extremely hard time managing the switch to a 4:1 ratio yesterday, and it was the hardest day so far and we still have training wheels on.  The test comes when we are home navigating this ourselves.

One very frustrating thing is that Abby is *very* hungry.  Some of this is psychological – the meals are small and you have to make a psychological shift in what your relationship with food looks like.  Some of the hunger is to be expected (her stomach is used to larger, bulkier meals).  But some of it may be that the meal plan wasn’t sufficient calories for her – this was definitely a possibility as her blood sugars took a precipitous drop on Wednesday, so we added another 160 calories to her diet (in the form of a second snack) and we are hoping that will correct the issue.  It did seem to correct her blood glucose but she’s still ravenous.  Hopefully that will shift soon.

But that brings me to another issue – she is sneaking food every chance she gets.  I know she’s not just doing it impulsively and forgetting she can’t have it, because she’s hiding it (badly) from me.  Sorry kid, but the mini-sugar-free-chocolate chips all over the floor were a dead giveaway.  I’m worried because she was already a bit of a food sneaker even with free access to fridge and pantry.  This diet is not going to make things easier for her and will likely exacerbate that behavior in the short term.  We may need to get locks for fridge and freezer and the pantry.  Hopefully this behavior will self-correct before it’s a huge problem.  For Abby, the practicalities of sneaking food are that when (not if) I find out that she snuck food, I have to do my job to give her brain protection against those carbs – whether it’s a lick of a lollipop, a handful of cucumbers, or a giant cookie, the treatment is the same:  Give 1 fat exchange (serving) in addition to the rest of her meal plan to compensate.  This means that in addition to the fat she’s already ingesting, she has to have 4 grams of canola oil, or 5 grams of butter, margarine or mayonnaise.  No kid wants to do that, but Abby’s ADHD of course keeps her sometimes from thinking through the consequences of actions.  So who’s the bad guy?  Moi.  Who else?
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People speak of this mythical lethargy that hits kids when they are making the change over from carb burning to fat burning (entering ketosis).  I was starting to believe it wouldn’t happen, but while Seth and the other kids were here visiting, Abby fell asleep and took a several-hour nap.  When she woke up and ate her pre-bedtime snack, she perked right up and was then completely bouncy, but crashed again shortly therafter.  I can’t say I was totally hating the nap.  More of THOSE times, please!  (but not forever – I’m still a Jewish mother and I worry)

I have a draft post started about the meal-planning, math, and recipes, but I’m tired – I only slept for about an hour and a half last night and have no real time left during the day before (hopefully) discharge.  Today I’m basically on my own in terms of figuring out what to feed her (the team will check my calculations for me if I want them to – and they will do so even after discharge if I email them copies).  As soon as we get home, assuming there’s time, I’ll cook a couple things for her to get through Shabbos.  Otherwise, there are plenty of other things.  The most important thing is that I’ll need to preweigh anything that I can before Shabbos starts, but that should be easy enough.  I hope.  It’s hard to believe the training wheels come off today.  It’s scary, but it means that Abby is doing well.  If she weren’t stable, they would not discharge her and it looks likely that we *will* go home this afternoon.

The team here has been amazing.  They’ve adjusted her calories, worked hard to find options that will make Abby feel mostly normal, and they’ve bent over backward to help me find foods that will keep Abby excited (or at least, begrudgingly willing) to keep trying her meals.  She’s been a real superstar.  She’s almost at the edge of being on the older side in terms of kids for whom the diet is most successful (in terms of compliance) – a baby never knows anything different, but an almost 10 year old knows exactly what she’s missing out on.  The whole team is absolutely astounded at how well my ketokid is doing and we are just so grateful to CHOP and the KetoTeam for *all* that they do.

More later, but I’m off to class!

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CHOP KETO ADMISSION: DAY ONE

Today was admission day for Abby to start the Ketogenic diet.  The best I can say about today is…. at least we have set the bar low for tomorrow… after today, even the tiniest success will mean that it was more successful than today.  We haven’t exactly gotten off to the *best* start.  For one thing, we arrived late.  It was mostly my own fault.  I had too much to do and I messed up.  My husband had a mid-day appointment and I should have told him to take the car, not the van, so that I would have had more freedom of movement, rather than feeling like I was stuck at home while he was away, but I figured I had plenty of time.  Except we didn’t.  Abby’s admission time was 3pm, which meant we needed to leave the house at 2:30 at the latest and… well, we didn’t leave on time.  And I forgot a few things, and packed way too much of a couple of other things.  But don’t sweat the small stuff, right?

I called CHOP on the way and told them we’d be here before 3:30 and they said, “No worries – we aren’t closing or anything.  Thanks for calling!”  We were, indeed, here before 3:30, so we weren’t *that* late.  Nothing much happens on Day One anyway – the restrictions of the diet don’t begin until breakfast tomorrow, so that’s good.  Abby was still able to eat normal food right up through dinner.  But no pre-bedtime snack, other than water.  Fair enough.

We arrived on the floor – Abby, me and our entourage, since Seth and the other kids came with us to help Abby get settled – and found out that the kosher keto family (I’ll call them our “keto-coach” from this point forward) that’s been helping us get acquainted with the ins and outs of the diet and who have been true cheerleaders and absolutely indispensable to me throughout all of this had left a package for Abby with some presents fro- sugar free snack-pack gelatin (like jello cups), a bracelet/charm making craft project and a quilt-tying craft project.  What a relief.  She was delighted, I had another keto-friendly (and kosher) food I could give her, and now I had two other new activities for her to do while here!

abby CHOP admission day
Shortly after we got to Abby’s room, one of the kids asked for gingerale, and I went to the nutrition room to get some and next thing I knew, I slipped on a patch of water that was on the floor and … well, I was on the floor, too.  I banged my knee and elbow pretty badly and my hip (the arthritic, sciatic one) had shooting pain going through it.  Seth came running when he heard me cry out and he got a nurse.  I got band-aids  (I was bleeding!) and ice packs and then things just kept seeming to feel very busy, so I sort of forgot about it…. until later when things were quiet and I realized how much everything hurt.  UGH.  This is going to hurt for a while.  Ugh.

Of course I realized a few things I’d forgotten which was bound to happen.  Seth will bring them tomorrow.  Much, much later when I was unpacking everything, I was talking to a friend (R) and suddenly…. I realized I did not have our gram scale.  The gram scale is vital for the diet.  Without it, she can’t do the diet.  I MUST HAVE IT.  I called Seth in a panic.  Obviously I didn’t pack it.   Except I distinctly remembered packing it!  It was the first thing I packed so I wouldn’t forget it!  I must have taken it back out of the suitcase when I was rearranging things so I must have left it in my bedroom.  But Seth couldn’t find it anywhere.  He sent me photos of my entire bedroom (which made me realize how badly I need to clean and organize my bedroom!) to prove it.  It wasn’t in the kitchen, it wasn’t in the basement, the garage, dining room, no where.  It wasn’t in either suitcase, any of the drawers I’d put things in, not the cabinet, not on the desk, not the bathroom, not on top of the fridge.  How had a $200 scale disappeared.

I texted my keto-coach in a dead panic.  Not to worry, she said.  Take a deep breath.  They have extra scales on the unit.  She knows someone with an extra scale in Lakewood and Chai Lifeline comes down from Lakewood every single day with food, so they can bring the scale to me before the end of the week.  Take some deep breaths, stop worrying, get some rest or at least read a mindless book, she said.  I couldn’t help it.  I was panicking.   I felt so stupid.  How could I have forgotten this essential item?  How could I have *lost* this expensive tool?  How were we going to afford another?  Once the freakout program had been started, there was no going back.

Finally, I decided it was lost forever and I needed to sit down at the desk to work on something else.  I pulled the chair out and… there it was.  On the chair.  Because yes, I *had* packed it, and I’d already unpacked it and I’d put it on the chair so that I could get it set up on the desk.  But then I had shoved the chair under the desk and… didn’t see the box anymore.  Eek.  I called my friend R back, told her I found the scale and she said that’s great!  And I said, yeah… and then I burst into tears.  “I can’t do this.”  “Yes you can.  You can because you don’t have a choice.  If it were my kids, they’d be in trouble, because of all the math – math and I don’t mix.  But your kid is going to be fine. You’ve got this.”  Somehow, I made it through without going into a full on panic attack.  Which is ridiculous regardless, because there never was anything to panic about.  I am certain I wouldn’t have been the first person to not have a scale.  They’ve had patients who have been placed on the diet as the result of emergent circumstances rather than planned admissions – those families don’t come with all this equipment in hand.  Obviously they have ways of handling it.  But, like I said, once the freak-out program was engaged, it had to run its course.

And then, when I thought it was all going to be okay?  I lost a filling.  Because this is MY life and it wouldn’t be nearly complete if I didn’t have just one more thing happen to top it all off.

I quit.  I’m going to bed now.  Tomorrow had better be better.

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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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