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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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Paranoia

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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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.

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!

ketowaffle

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!

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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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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?
IMG-4475
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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Frantic

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?

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