Journal entry by Galen Henseler

On January 24th, Berkeley (most likely) had a seizure due to a hypoglycemic event (low blood sugar) while I was at work. This was followed by a call to 911, and then a call to me. When I got home, the EMTs had just left because Berkeley had seemed to be okay; before leaving they suggested that we might want to check Berk’s blood sugar.


When I got home that morning, Berk was acting normal but within minutes she started getting drowsy and acting strangely. Luckily, since I am a Type 1 diabetic, I have a blood tester handy, and so we checked her blood sugar....


Now, a brief aside. For a normal person, a typical blood sugar is around 80-100. When I hit 75 I start to “feel” low – I get very hungry, shaky, and lethargic. The lowest blood sugar I have EVER had in my 14 years of being diabetic is 48. I can count on one hand the number of times I’ve been below 60. For me, high blood sugars are an annoyance, but low blood sugars are scary.   


When we checked Berkeley’s blood sugar that morning, it was 41. She was lethargic and slurring her words, and so we began giving her honey to help bring her blood sugar back up. To be safe, we called the paramedics again, and had them come back. They tried to start an IV on Berk (giving her a second degree burn with a flashlight in the process!) and when that was unsuccessful, they took her by ambulance to the ER.


At the ER, Berk’s blood sugar started coming back up (the honey was working) but we noticed that her left arm and leg were not moving. They were dead weight, and Berk was unable to use them at all. The ER doctors ran a bunch of tests and Berk had a CT scan -- everything looked normal.


However, since a healthy kid’s blood sugar should not drop so low, they sent us to another hospital that has a unit staffed with pediatric endocrinologists. We spent two nights there where Berk had her blood sugar checked every 2-3 hours in addition to having her blood drawn multiple times to have more tests run.


Since we were released from the hospital, we have had to keep a close eye on her blood sugar to make sure it doesn’t drop too low – which it continues to want to do. We test her blood sugar all day long. It is my job to test her blood sugar at night. This means every two hours I must wake up in order to wake her to poke her finger to test her blood.

So where does this leave us? We are not sure.


Two tests came back slightly off – but even those were not a clear indication of what is going on. All we know is that Berkeley’s blood sugar trends down during the day and especially in the morning. Yesterday she had a 48, and we have had multiple times where she has been lower than 60. If we didn’t know this was happening – and didn’t give her juice to bring her blood sugar back up – she would end up having another dangerous hypoglycemic event and we would be back in the ER.


The next steps probably involve genetic tests – not only to see what is going on with Berkeley, but also to see if we need to worry about Lincoln. If we don’t get answers soon, we will explore going to Salt Lake City or Seattle to see specialists at a large pediatric medical center. In the meantime, we will continue to spend our days wondering what is wrong with Berkeley and making sure that we do everything we can to keep her healthy and safe. 

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