Sunday, July 25, 2010

'D' Revisited

So, when Elly was diagnosed, I was already 6 weeks pregnant with Anne. Matt and I both figured "what's the chance?" and went on with life, caring for Elly and her diabetes, fairly confident that we wouldn't have to visit 'D' a second time with our second child. Little did we know at the time, but our chances were VERY good. Because Matt was already T1, Elly's chances was 1 in 22. Now, with Elly and Matt having T1, Anne's chance was 1 in 6. If we were to have any more children (which we aren't) their chances are 1 in 4. Not good odds in my opinion.


Anne was born on February 7, 2009 and was a healthy baby girl. We brought her home and went on with our life, caring for a toddler and a newborn. Due to Elly already having D, we did run a little scared and I checked Anne's blood sugar about once a week "just in case." Everything checked out great until mid January of this year. Anne was a tad fussy and not acting quite right so I decided to check her blood sugar, which came back 267. What???? Are we seriously going to do this again with another child, this time starting even younger (Anne was 11 months at dx and Elly was 25 months). I called our diabetes team and they suggested that we go straight to urgent care so she can have blood work done. We took her in and other than her blood sugar being a tad elevated (I believe she was about 160 at the time) everything checked out and we took her back home. They did rush the rest of her labs though and since it was a Friday night, we were to call the on-call pediatric endo the next morning for the rest of the lab results.

In the morning I paged the on-call and she delivered the news...Anne was also diabetic. This news hit Matt and I like a ton of bricks. How did this happen again? Why us? Why why why? It was hard enough caring for one little one with diabetes, but we now had 2 to care for. Our lives just got even more complicated.

Due to Anne being in the very early stages of D (her a1c was still 5.9) and our knowledge of how to care for a young child with T1, we were able to start insulin therapy at home and Anne was spared the hospital experience. The one problem that we ran into with Anne that Elly never experienced was that we were never able to give a small enough dose of lantus (the long-acting insulin) to Anne and not have her go low in the middle of the night. She was getting a half unit of lantus and it was too much, but she couldn't go without it either. We looked into the possibility of diluted lantus, but were told by the pharmacy that it wasn't possible. We were able to dilute her novolog (or fast-acting insulin) and that worked great. The only option we felt we had was to get Anne on a pump as soon as possible. When Elly was diagnosed, our diabetes team required that all T1 children be MDI for a year before starting a pump. We went through that with Elly and took the necessary pump class before Elly started pumping. With Anne, I think the diabetes team felt that we had enough knowledge and experience to skip the year of MDI and go straight to pumping with Anne. So Anne started pumping right before her 1st birthday.

The pump has been wonderful for Anne. When we first starting pumping with Anne, there were times at night when she didn't get a basal, and that helped prevent night time lows. This was something that can't be done with lantus. Once lantus is in your system, it is there until it wears off, where a pump gives a constant drip of insulin, which can be altered depending on the user's insulin needs.

Anne has now been pumping for 6 months now and it has been wonderful. And in the last month, Anne has also been on a CGMS, just like Elly. This has also helped me fend off lows before it becomes an issue.

It just seems unfathomable to have two little ones with D, but here we are. It's been hard sometimes and I go without sleep a lot but my little girls are worth it. They are precious and I hope that someday in their lifetime a cure is found.

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