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Posts Tagged ‘CHOP’

 

 

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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