Monthly Archives: February 2013

five hundred eighty five thousand three hundred minutes

How do you measure…  Mah-Tab-O-Liz-Um  ?

…it was a crazy year, the first year my little Obiwan was diagnosed. 

Seven weeks and six days after he was diagnosed, he vomited.  He continued to vomit 3-4-5 times a day, every day, for one year five weeks and a day – about five hundred eighty five thousand three hundred minutes… of our lives… studying vomit.  Two 3-ring binders worth of daily logs: date, BG, food, insulin, vomit, how much, time from insulin, etc…

…in-ti-mate knowledge of metabolism, blood sugars, insulin… how apples behave versus oatmeal, how fast it came back up and how much of it came back up… which foods were absorbed fast and vomiting didn’t impact absorption (heh, I mean insulin dose), which foods had minimal impact, moderate impact, or full impact…?  How much insulin to give or not to give, how much food to replace, or not to replace – those were my questions … lest he drop to 30 or sky rocket to 300!  Usually the later in the beginning months since I was terrified of the 28 he once had post vomitus.

Docs finally figured it out, five hundred eighty five thousand three hundred minutes later.  A rare stomach condition (twenty known medical cases in the world-kind-of-rare – not even listed at NORD).  No known treatment, except one 12 year old girl in Korea, steroids were helping.  We all agreed – no steroids – not a good choice.  Our brilliant think-outside-the-box pediatric gastroenterologist at Cedars-Sinai suggested we try an over-the-counter, zero-to-minimal side-effects with short-term use medication, prescribed at toddler dose – it worked.  Less than 48 hours later, no vomiting – none.

I waited. 

After one year five weeks and a day, of course, I waited.  I waited for the other shoe to drop.  Still trudging along with bunches of towels and changes of clothes everywhere we went… and I waited.  How could it be that simple, after so long…?  T1D coupled with vomiting preparedness was our lifestyle, now.

It.   was.   that.   simple.

After 8 months on the simple med, brilliant think-outside-the-box pediatric gastroenterologist said he should stop taking it – stop taking the miracle med that helped get our lives back to the expected unpredictable diabetes ride…?  The miracle med that gave us the magical gift of T1D ‘normalcy’ again…?

The over-the-counter, zero-to-minimal side-effects with short-term use medication, prescribed at toddler dose DOES have long-term effects not good for anyone, much less a growing child with T1D.  Let’s do a trial discontinue.

WHAT!?!?!   NO!   WHAT IF … ?

…Spinnin’ wheel got to go ’round… ain’t that the truth.  

It was over.

Vomitus Vs. Us:  a grueling battle with T1D dictating the arena for five hundred eighty five thousand three hundred minutes – a freakin’ crazy year, but we won – kicked it’s wretched tuchus!

 


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