Highs and Lows with New Medicine

Katie's bruised heels from checking her blood sugar.

Katie's bruised heels from checking her blood sugars.

Katie started on glyburide when she was 10 days old and it took us about a week to get her doses figured out.  Initially, she was on 0.05mg of glyburide (in a 1 to 1 suspension) so when I got the next prescription, I requested that the pharmacist make a weaker suspension to make it easier to measure.  Unfortunately, I ended up giving her 4 times the amount of glyburide to get her down to the mid 100’s.  I ended up mixing my own medicine with Andy’s pills for a couple of days.  Sometimes it got her down to the low 100’s and sometimes she was in the 200’s most of the day.  Finally, last Wednesday, I was able to pick up another new prescription, this time in the same concentration as the first.  At first, I couldn’t get her down under 200 in the evening so one night I gave her 0.1mg and that sent her into a hypoglycemic reaction.  She was down to 36 and was in a cold, clammy sweat.  Fortunately, she was still alert and woke herself up enough to nurse which brought her back up quickly.  After that, I slowly built her up to the point where she is now taking 0.06mg in the morning and 0.08mg in the evening.  Even though her doctor said I could go back to only checking her 4 times per day, I just can’t seem to get comfortable with that.  With Katie nursing and putting on nearly 2 oz per day or more, I think we are going to have to constantly increase her dose.  Maybe things will get better once her weight gain levels off in a few months.  On a positive note, she is gaining weight at a much faster rate than Andy did at this age.  I hope that is a good indicator that her development will be better than his since her blood sugars are not going as high as his did.  It’s hard to believe she is almost 7 weeks old(tomorrow)! 

We are also in the process of adjusting Andy’s glyburide dose.  I think he is going through a growth spurt.   Some days, he comes home from preschool and he’s in the 200’s so we give him a dose of 1/2 pill which brings him to 4 doses per day.  Other days, he comes home and he’s perfect.  Amazingly, even with a total daily dose of 2.5 mg, that is only a third of what he started out on in the beginning!  This disease is so interesting to me and I learn something new every day about it.  I hope through this blog, I can impart some of the knowledge that I have learned through the years and in the future.


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