ChezPerky

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.

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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.

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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.

Priorities.

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:

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!

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