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Posts Tagged ‘ketokid’

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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