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.

2 thoughts on “Highs and Lows with new medicine

  1. Wow, is all I can say to your blog. I cannot imagine having 2 babies with diabetes. My son was diagnosed at age 7 (he is 12 now). It was such an emotional time for our family. It happened on Christmas eve, although in hindsight had been going on probably close to a month. We thought that day that he had come down with a flu virus, but in the night his breathing became very labored and I could hear his breathing all the way across the house in my room. When I ran to check on him, he was totally lifeless. It was the scariest thing I have ever been through. After rushing him to the
    ER, they flew us to St. Louis Childrens Hospital. It is hard for an “outsider” to realize how this completely changes your life. Like you, my successes are measured in a day of good numbers. A good A1C is like a good report card for me. I also do not heed the 4x a day check. I am closer to 6-8. I set my alarm every night for 2am to do a check. Nights are the scariest. He knows when a low is coming on during the day, but not at night. That one is up to me. He started middle school this year, on top of moving to a new state. We had the same nurse from diagnosis in first grade until this year. They do not even have a school nurse this year. He is totally on his own and that set up some real panic for the first month or so of school. He has proven to me that he can handle most of it on his own and knows who to go to for help, so it is working out. Sorry for the rambling, I’ll stop now. I was surprised to hear that you give pills. We have to do injections and carb counting. He takes one unit of novolog for every 10 grams of carbs he eats. Godd luck to you and your family.

  2. Stephanie, I remember those days of counting carbs. I’m in the process of telling Andy’s story in various parts so look for those to come. We had to give him multiple daily injections for several months, but because he was so tiny, he was constantly having lows. It was very difficult to even measure the amount of insulin because we were trying to give him 1/2 units of humalog. We were never sure if we were giving him a bubble or actually had insulin. Finally after 8 months of that, we got him on the Animas pump and he was on that until we found out he had the gene that causes neonatal diabetes and were able to transition him off of insulin and onto glyburide. Luckily, his A1C’s are so good now because he stays so stable. It took me a long time to back off on blood sugar checks, but we are to the point now that some days we don’t even check him. It’s kind of wierd, but it works just because the pill makes his body work like a normal kid now. We are blessed and I continue to pray every day for the other kids who are not so lucky that one day they will have a cure for this disease. God bless you and your son.

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