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A Journey with Neonatal Diabetes

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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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Well this is my attempt at creating a blog about my family.  More specifically, about my children and our constant daily struggle with neonatal diabetes.  To give you some background, I will tell the story about how my children were diagnosed with diabetes.  My son was born in April of 2005 and immediately upon birth showed some unusual symptoms that the doctors could not explain.  After a week of testing, they finally sent him home and he developed, seemingly, like a normal baby.  Then, at 4 months of age, he started to lose weight and have huge diapers, as well as began nursing constantly.  On August 23, 2005, he was rushed to the ER and two hours later diagnosed with diabetes.

Initially, the doctors told us he had Type 1 diabetes and we learned how to give him insulin shots and check his blood sugars.  However, life was very frustrating because over the next year, I searched high and low for information about babies with diabetes, only to come up with almost nothing.  Andy switched to an insulin pump just before his first birthday which helped us bring his levels to a more controlled range.  We moved to North Carolina that summer and after meeting his new endocrinologist, our lives changed forever.

In August of 2006, a little girl in Chicago was successfully weaned off of insulin and changed to glyburide therapy for her diabetes.  Our new endocrinologist saw the article in September and immediately called us and said he thought Andy might have this type of diabetes.  We had Andy's blood drawn for DNA analysis in November and spent the longest holiday season of my life.  Finally, January 2007, our doctor called us with the results and told us Andy did indeed have the genetic mutation that was causing his diabetes.  We tried not to get our hopes up, but we kept praying for a miracle.

On January 21, we checked into the children's hospital and Andy received his first dose of glyburide at 8:00 on Monday, January 22.  By noon, he was showing signs that his body was definitely responding to the glyburide.  We slowly increased his dose each day and by Wednesday afternoon, Andy was totally insulin free and we disconnected his insulin pump.

Fast forward to this year, 2009.  I was pregnant with my second child, my daughter.  Everything in the research about Andy's condition led me and my husband to believe that our chances of having another child with this was very small.  90% of the children with the gene mutation have a "de novo" mutation, meaning it is just random.  Without having our own DNA tested (which would have cost over $2000), we didn't really know what our chances were.  Naturally, we worked out a plan with our pediatrician to have her blood sugars checked upon birth.

Katie was born in August, 2009 and her blood sugars were high on the first day.  Although her first and second checks were within a normal range for an adult, they were well above the normal for a newborn (96 and 117).  However, not really knowing what a normal blood sugar was for newborns (most newborns are checked when they show signs of low blood sugars only), the doctors tried to remain optimistic.  Within the first week of life, Katie held pretty steady with her blood sugars being in the 100's, but at 8 days old, she spiked up to 234.  At 10 days old, after getting the run around from my endocrinologist, I finally talked to a wonderful doctor at the University of Chicago who is doing the research on Neonatal Diabetes genes.  He heard my story, and knowing that Andy already had the gene mutation, called in a prescription for Katie and she started on glyburide for her diabetes.  To date, I believe she is the youngest baby to ever start immediately on glyburide and never have insulin.

Anyway, that is the story of our babies being diagnosed with diabetes.  I hope to some day spread the word nationally so that other parents of children with this diabetes may discover this wonderful new treatment.  There are many out there who don't even know.

For more information about babies with diabetes, visit monogenicdiabetes.org or neonataldiabetes.org

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