Two Steps Forward, One Back


Abby had a great keto followup at CHOP yesterday. I’ve shared with a few people privately, but have hesitated to say out loud, that she’s had some really outstanding and remarkable success with the ketogenic diet – even this early on in the diet.  We are cautiously and optimistically, but reservedly overjoyed with the improvement we’ve seen in her seizure threshold in the last six weeks – it is truly remarkable.  On the outside I’m reserved and quiet about what’s happening, but on the inside I’m screaming and jumping for joy at how stark the difference is in her prognosis.

On September 9th, Abby ate 3, yes, THREE full sized non-ketogenic friendly donuts.  I was devastated, and she had five (5!) significant seizures and spent the day screaming her head off at me, telling me how horrible I am, how much she hates me, how mean I am, how much she hates the diet and how she doesn’t believe me that she has seizures and she doesn’t care if she does, I can’t make her do this even if she does have seizures.   None of this got directed at her father, even when he stepped in.  I was still the force of all evil, not him.  Obviously.

Yesterday, I was able to report that she hadn’t eaten a single morsel of non-ketogenic food since then.  She also went 12 days with ZERO seizures until September 22nd (2nd day Rosh Hashana), when she had one breakthrough seizure – very small – which we observed at shul.  But ONE breakthrough seizure in 12 days was still AMAZING.  Before the diet, I was excited if she had one seizure-free day.  Twelve was unheard of.  And as of yesterday, She was 17 days with no non-ketogenic food cheating.  Amazing.  Everyone was high-fiving her.  She was excited.  I was excited.

But you know what’s coming.  I’m writing in the past tense for a reason.  I failed her.  I’m exhausted.  I’m sleep deprived.  I’m also lazy.  Locking the fridge, freezer and pantry means that if Sam wakes at 4:30, as he did this morning, I have to get up to give him access to the freezer (for ice) or the pantry (for cereal), etc.  If those are already unlocked, he can fend for himself until I can drag myself out of bed.  Which is what happened today.

But today, I realized that Abby was up.  And she was giggling and pleasant.  And she hadn’t knocked on my door to tell me she was hungry.  Oh sugar beans.  So I got up and pulled out her glucometer (today would have been the day to check glucose and ketones anyway, so it shouldn’t have been a surprise to her (we check every other day unless there’s a problem).  She started screaming immediately.  “I wish we didn’t ever have to check blood sugar!”  Blood curdling screams.  Okay, Abby, tell me what you ate.  If you just tell me the truth right away, you will not be punished.  “I don’t know, something from the pantry.”  What, exactly, from the pantry?  “A cookie.”  How many?  “Three.  Maybe.  I think.”  Which means probably 4 or 5.  Blood sugar elevated, ketones precipitously dropped. So I have to give her extra fat, which threw her into a rage.  I did not react, I did not punish her (it would have only made things even harder for her teacher today).  I only gave her the extra fat to try to counteract the carbs she got.  Throwing things.  Screaming at me.  Telling me how awful I am.  Telling me that I’m a horrible evil person.  How much she hates me.  The works.

I feel awful about it because I didn’t set her up for success and she had been doing so well.  If I had locked the pantry, she wouldn’t have been able to have this setback.  She wouldn’t be walking into school already in a rage.  She wouldn’t be set up for probably having seizures throughout her morning, which will make for a frustrating school day both academically and socially.  If I had just done my freaking job as her parent, this would not have happened.  I got too comfortable.  17 days of success wasn’t because she was doing so well with adjusting to the diet – it was because of our constant vigilance in locking everything up.  I failed her last night.

Fortunately, she’s got the memory of a goldfish, so hopefully she’ll come home from school having forgotten all about it and ready to start fresh.  Because I don’t really have time for grudges.  Ihave too much else to do today.



Have I told you about how on Saturday Abby snuck 3 donuts, her ketones plummeted and she had five seizures? And how she spent the entire day screaming at me about how mean I am to her and how I don’t love her?  Yeah.  So perhaps you’ll forgive that I’m a wee bit paranoid about the possibility that she might fall off the derech occasionally with this diet…

So today, after everyone was at school, I noticed that there were donuts on the table.  I did remember Tobie asking if she could have a donut (for? with?) breakfast, but I hadn’t expected that she would leave half of it on a plate on the table, nor that she would leave the box on the table.  Ugh.  I began to worry that Abby had eaten some of the donut(s).  And so, this is what my day (which i had planned to spend napping) ended up looking like:
8:30: Remind girls that the bus would arrive in 10 minutes
8:35 Remind girls to go outside to the bus
8:37 Urgently remind girls to GO OUTSIDE NOW TO THE BUS
8:42 Hear bus pull up, frantically look around and feel relief that girls are outside
8:43 Get Sam in car
8:58 Drop Sam off at school.  Hear lecture from him about how he really should get dropped off early.  I’ll get right on that, thanks.
9:05 Arrive home.  Discover donuts on table.  Panic.  Call school nurse.  Alert her to the possibility that Abby could, theoretically, have seizures.  I tell her I have to go to the dentist, but I will come take Abby’s blood sugar/ketones immediately afterward.
9:32 Drive to dentist.
9:40 Realize I’ve forgotten Dentist’s new address.  Freak out.
9:50 Arrive at Dentist.
11ish: arrive at school, take blood sugar/ketones, Abby is fine, but it is clear that Abby did NOT take her ADHD medicine this morning as she is bouncing off the ceiling.  This means she also didn’t take her seizure meds.    She also tells me she didn’t refrigerate her lunch (which includes several ounces of heavy cream.  AND she’s starving, says she.  So I go home to get her a snack, measure some new heavy cream out, and return to the school.
11:55 arrive at school, give Abby her snack (gummy bears and butter…she didn’t want oil, which is fair enough).  Realize I didn’t bring her medication.  Go home.
12:20 Go back to school with her medication.  Give it to her.  Leave School.  See I have a text from CVS saying my medication is ready – but at the store that’s 15 mins away.
12:35  Receive phone call from the school.  Tobie has forgotten her lunch.  I’m already most of the way to CVS.  No where near home or school.  Go to CVS, buy snacks and Orange Juice there to bring to her and pick up my medicine there while I’m there anyway.
1:10 arrive at school, drop off lunch.
1:25 arrive home.  Try not to pass out.
2:15 drive to Sam’s school to pick him up at 2:30.

Today was supposed to be a dentist’s appointment and NOTHING ELSE except a very long nap because I’m so very tired.

The Waffle Saga

If you never thought that waffles could be a saga, think again.  On the ketogenic diet, regular kid dietary staples are a thing of the past.  That means pancakes, waffles, grilled cheese, french toast, pizza, all those usual kid favorites?  They are out and poor mom is left desperately seeking a substitute for picky kid carb fiends.  Keto dieticians are very accustomed to hearing “My kid isn’t picky at all.   S/he will eat anything at all… so long as it is a carbohydrate.”  My daughter was particularly concerned she wouldn’t be able to eat enough sweet things.  She’s STILL concerned about that, to be honest.  I’m concerned she’s not getting enough nutrients, but she’s still upset she can’t walk into a store and buy a candy bar.


We’ve managed to make a reasonable facsimile of French Toast.  Check.  We have not yet satisfied her need for pancakes.  She hates the keto pancakes.  Not yet a check.  I do, however, have a pretty good keto waffle recipe and I was pretty proud of my keto waffles.  So much so that I felt safe making waffles for her and serving them alongside “real” waffles for the other kids.  I defy you to find a more realistic looking waffle!


They were not bad, if I do say so myself!  And she liked them.  Until, that is, she spied some of the other waffles.  Because, while I did, indeed, make many of the “real” waffles in the same waffle-stick maker that I made her waffle in, I made the mistake of making SOME of the “real” waffles in the “Mickey Mouse” waffle maker.  Oh dear.  What a colossal mistake!  She was having none of her waffle-shaped waffle!  IF it wasn’t Mickey-shaped, it was NOT a waffle.

The problem is that her waffle batter is pretty small.  AND it isn’t very spreadable.  So there wasn’t a great way to make it in the Mickey waffle maker!  Uh oh.

But there had to be a solution.  Starting with the fact that she’s been losing weight rapidly, so I already knew I had to increase the size of her meals by 160 calories.  So that would automagically increase the size of her waffle.  So I started there.  But that made… a still not very spreadable waffle that didn’t look very…. Mickey-like: MickeyTake1

It was clear that somehow I had to add more spreadability and more volume to the batter.  So I consulted my sous-chef/husband.  We decided to use some of her cream to the batter.  It took a full 30 grams (as much butter as was already in the batter!) but we came up with a batter that was spreadable.  The waffle was more fragile and a little tricky to maneuver, but it worked!  And I had a very happy girl!


The WaWa Family

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!




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?
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!


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.


So this morning, when I discovered that my van keys were missing (they are still missing); I was frantic. The kids were already on their way out the door and I didn’t have time for such shenanigans. I ran around the house looking in every logical place. I looked in some illogical places (including the freezer…. don’t laugh; I’ve found them there before). I grabbed my husband’s car keys and told the girls to pile into the car. Tight fit, but better than nothing.  We were about to leave, but then Abby shrieked that she’d forgotten something. I yelled at her to HURRY UP ALREADY because for Pete’s sake we were already running behind because of MY stupidity!
And then this sweet woman who was out for a walk stopped and asked “are you new in the neighborhood?” You know, right after I’d YELLED AT MY DAUGHTER to hurry it up already. “Yes, I’m new in the neighborhood. I’m so sorry. I’m having a tremendously bad morning.” She had some pleasantries for me and was possibly the nicest person I’ve met ever in my life (which is saying a LOT – I know some extremely nice people!) and she introduced herself and that’s when it hit me. She’s the Rabbi Emeritus’s wife. The Rebbetzin Emeritus. Oh. My. God. I’m standing there, frantic. Late for School. YELLING at my daughter. During the Nine Days. And The Rebbetzin walks by. And she couldn’t have been nicer.
What is WRONG with me.
I need to work on myself and set my priorities better. I really do. I need to be a better person. I need to care about the good stuff. I need to not worry about being late or who forgot something or who left their stinky socks in my bed. I need to carry myself with more composure and stop always looking like such a mess.
I will make this promise to myself. But by tomorrow morning I will have made a mess of my morning again. Maybe this time I can keep the promise an extra day. Thursday is a good goal. Right?

Waiting to Exhale

I was on my way to the bank when I received a message from my son’s school:

[Redacted] School  has been evacuated. All students & staff are safe. Now awaiting the all clear to return to the building shortly.

The school is right near the bank, so I had to drive past the school on my way to my next errand after the bank. The police had the school parking lot barricaded. There were police officers everywhere and there was a firetruck and fire marshals across the street. There were some faculty on the lawn at the far end of the parking lot (not directly in front of the school), but no sign of the students. This was not a drill. The students were clearly not on campus. Obviously, the school wouldn’t lie. They had told us that all students and staff were safe, so no need to worry, right? I soon discovered that students had been walked up to the firehouse several blocks up the road. This is the protocol for a bomb threat.

I tried not to worry too much. After all, students and staff were all reportedly safe. I went about my errands. Which kept taking me past the school. A dozen police cars, maybe. Did that seem like a lot? Still no sign of the students an hour (plus) later. This felt excessive, but was further evidence, to me, that this was *not* a drill. On my last pass by the school, traffic came to a stop and I was relieved to discover the reason: students were walking back to the school, with a police escort, and traffic had been stopped to allow students to cross. These students seemed too tall to include my son’s class. I put my car in park as I watched the long stream of students pass us by. Suddenly, there was a dip in the line of students and there were several shorter boys, including one that truly resembled Dennis the Menace, but wearing a bright red Mario & Luigi t-shirt. He bounced about as his favorite aide tried to keep him moving along safely in line. My sweet, predictable boy looked completely unruffled. Unconcerned. Unaware of any perceived danger.

It was then that I realized I had been holding my breath. I had been talking to a friend on the phone, trying to convince myself that I wasn’t worried. I let out a breath and tears started streaming down my cheeks. I felt ridiculous. Of course I had known all along that he was fine. The school had already assured parents that all students and staff were fine. But seeing him safe and sound, I realized I hadn’t really believed it until I saw him with my own eyes, no matter how illogical that may sound. The school takes such great care of him. They tell me about his milestones (he rode a two wheeler for the first time yesterday!) – a luxury they have with ten students and four adults in a classroom – and watch out for his rough days. They love him and he loves them, even on his rough days. I know they would never let harm come to him and if, chas v’shalom something should happen, they would never not tell me about it right away.

But, still, something about seeing him with my own eyes….*knowing* that he was okay… that made me realize that it was okay to breathe.

I will hug him tight when he comes home today. And he will look at me a little funny like I’m a bit crazy. And that’s okay.

Oh, we did get the official word, shortly after I watched him walk back into the building:

Update: As of 12:30pm authorities have given the all clear and students are safely back at the [redacted] Campus.

We haven’t fully moved Abby’s epilepsy care to CHOP, but we are 90% of the way there, and the thing that has convinced us that we are doing the right thing is that they have an approach that treats the whole family, not just the symptoms, the diagnosis, or even just the patient in front of them.  They recognize that epilepsy affects not just the child whose medical record number and insurance plan they can bill, but the whole family who walks through their doors.  The realize that they can treat the symptoms – the staring, the shaking, the electrical interruptions in the brainwaves, but there will still be significant impacts on the quality of life of the child, the caregivers, the siblings, and the child’s teachers and social peers.    This is no small bit of understanding.  Not only do they understand these things, but they actually are working to do something about it.  Their ketogenic diet program includes the parent and child as equal members of the treatment team (and I’ve seen evidence of this being true and not just talk) – I’ll talk more about this later, but today, I want to talk about a different treatment modality, and one which I think many parents never consider – psychotherapy.

CHOP has a dedicated neuropsychologist as part of their Pediatric Regional Epilepsy Program (PREP) who is dedicated to treating pediatric epilepsy patients.  While knowledgeable about the ketogenic diet, her role is not limited to the keto team.  We would have consulted with her whether or not we were considering the diet (in fact, we had the appointment with her scheduled before we had pulled the trigger on the diet admission).    Kids and families coping with epilepsy are coping with a number of issues – the emotions surrounding the realities of any pediatric medical diagnosis are significant, and all the more so if that child has experienced a crisis of that diagnosis as we have or has an intractable diagnosis, as Abby does.  But there are also not-insignificant impacts of medication on a child – medication side effects include mood changes, but even the physiological changes (such as hair loss or weight changes) can have an emotional or social impact for which a child may need help finding coping mechanisms.  Additionally, there are other social impacts that no one ever speaks about – or at least no one ever spoke to us about until we came to CHOP – what do we do if Abby gets invited on a playdate or for a sleepover?  Do we explain her diagnosis?  HOW do we explain her diagnosis?  Do we send her rescue medication (which is administered rectally) and risk scaring off the other parent or just tell them that if there was a true emergency, they should just call 911, which is what I did before I had the rescue med (and would still do in the event I had to administer the rescue med anyway)?    How do we find and train babysitters who are competent enough to take care of four kids, one of whom has intractable epilepsy and another of whom has ADHD and is autistic and another of whom has asthma, but all of whom are, at their core, basically normal, healthy kids?  How do we, as parents, find any time to ourselves to get away from it all?  To relax?  To take three minutes to NOT worry about how we are going to find a babysitter in an emergency?  How do we find support to ensure we have a sufficiently supportive IEP?  How do we know that the neuropsych testing done at the school was thorough enough?

All these questions and more are reasons that CHOP has a neuropsychologist dedicated to the epilepsy program.  At first I thought, “How do they have enough work for her?” but now I realize that she is probably severely overworked!  I am grateful that they have her.  We had a 90 minute intake appointment with her and while it was sufficient, I feel that we could have spent twice as long in her office and still filled the time.  She recommended a couple of books, suggested that we review Abby’s IEP together to see if we can strengthen the supports in it, suggested having CHOP do their own neuropsychological testing (six month waiting list for that, but that’s okay – if she’s got better seizure control by then, it may be good to have it redone at that point anyway), and recommended that she do weekly CBT with Abby to help her with some coping skills for Abby’s mood and anxiety issues, and also to help get her “buy-in” to the diet as we draw closer to the program admission.

The more involve we become with CHOP, the more proverbial Kool-Aid I drink, the more I start to feel hope again.  I am not sure I realized how dark and twisty I had been feeling for the last six or seven months until this fog started lifting just a bit.  The last week (has it only been a week) has been such a huge mix of emotions all at once relieved, terrified, hopeful, scared, excited, and anxious – I’m ready to move forward, though.  Through all of it, I’m mostly hopeful.  Mostly the anxiety I feel is a good anxiety – I’m anxious that there’s so much waiting time.  I just want to be moving forward and not sitting around anymore.  I want to be taking steps toward better health, toward answers, not sitting in this endless quagmire of questions.  It’s time for the fog to lift.

I am so grateful to have found a team that values the WHOLE Family.  I don’t doubt that our previous neurologist also valued us as a whole, but the institution simply had fewer supports in place to hold us all up.  It’s time to give up our sentimentality for a single caregiver and move to an institution that can take on the burdens we have been juggling all by ourselves.  (who am I kidding?  It’s mostly been me, not “us” –  that’s the nature of being a mom, and it’s not because my husband isn’t willing; it’s because we moms micromanage this stuff.)


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!”


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.