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.