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Archive for September 27th, 2017

chacha

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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