if you’ve been following along on instagram, you’ve seen our updates on our little miss maisley girl, but i haven’t quite had the time to update on here. someday i hope to pass over the reigns of this space and it is my goal that my babes will have a baby book, a scrap book of sorts, of our ‘life’. the ups, downs and how we found comfort in the christ, His grace and grew our love for one another, making the most of every day!

  SO. little miss maisley. 

it was a little over a year ago that the first incident happened. maisley girl had been fighting a cold and one morning she slept in…sleeping hard. as my 4th babe, i’ve learned to make the most of my time while the babes are sleeping and about every 20 minutes i’d go in her room, make sure she was okay and then get back to my to-do list. in hindsight, i should have never let her sleep as long as i did… but, regardless, it was the start of many red flags that would show up.
i finally woke her up only to find that she was very hard to wake up and more like a rag doll than our very energetic, spunky toddler.

a few months later, it happened again. only this time, i woke her up at her normal wake up time {i never made that mistake again} but when i brought her down, she was starting to tremor. she seemed dazed, not talking and fairly unresponsive. zach suggested her blood sugar may be low and when we tested it, she was 43. low.

we quickly got sugar in her.. chocolate milk, juice, honey, followed by some longer lasting carbs. 

i called our pediatrician, had a Telehealth visit through tears and he called us in for labs. obviously with Zach’s diabetes, our first thought was that she was diabetic, but her labs came back normal.

we eventually chalked it up to an odd occurrence and that she was likely fighting a cold.

but then it happened a 3rd time. 

zach went up to wake her up and she was symptomatic… tremoring, unable to talk, glazed eyes. We tested her blood sugar… 41. TOO LOW.

an average blood sugar is 80-120 for a normal person, although it’s not uncommon to be closer to 70 especially after fasting {not eating through the night while you sleep}. but 41? that’s cause for major concern.

another call to the doctor and we were given the referral to a pediatric endocrinologist. something wasn’t right and at this point, i was a mess thinking about all of the potential problems, AND not sleeping wondering if she would get too low and we wouldn’t know,

we met with the endocrinologist and she ordered a slew of labs with the main concerns being a brain tumor or diabetes. those labs, PRAISE GOD, came back normal. so we were on a watch and wait holding pattern. either it would continue happening and we could get the info we needed…or it would stop.
we needed to have bloodwork done WHILE she was low, but because it was happening infrequently, an overnight study at the hospital would have been silly because the likelihood of capturing a ‘low’ was low. 

but not too long after, it happened again. she was 60 but symptomatic so I drove to the ER to have labs done. the ER staff was incredible and was able to capture everything they needed.. they were able to do a catheter and blood work that showed she was spilling a high level of ketones, indicative of benign ketotic hypoglycemia. 

we treated her low with appropriate levels of carbs, but shortly after, she became unresponsive and her blood sugar was 265. 

what was supposed to be a discharge turned into an admission and we were transferred downtown to be monitored and figure out what the heck was going on with our maisley girl. 

zach met us at the hospital and we landed ourselves an overnight study and a close eye on what was happening. frequent blood sugar checks, labs and workups thankfully showed nothing more than the diagnosis of benign ketotic hypoglycemia.

where we are today

it’s been a few months now since diagnosis and while we’re still feeling like we get thrown loops, we have made major progress in our day to to day plan. the secret for us has been the use of corn starch with her bedtime snack/dinner. the cornstarch allows for her body’s glucose reserve to last longer making her blood sugars more stable through the night. we’ve also been introduced to a continuous blood glucose monitor that tracks and uploads her blood sugars every 5 minutes so we can monitor, also alerting us to when her blood sugar starts to drop.

benign ketotic hypoglycemia

so what is it?
a VERY BASIC explanation is that maisley’s glucose reserve {in her pancreas} is simply too small to be able to handle any ‘fasting’. she runs through carbs quicker than normal and then instead of her body turning off the insulin that her body is making, it keeps going, making her blood sugar continue to drop.

what does this mean long term?
thankfully, most kids eventually grow out of benign ketotic hypoglycemia and as they get older, they hopefully become less and less symptomatic because their pancreas grows bigger, they’re ‘fasting’ window {hours sleeping at night} gets smaller and they aren’t as sick as these younger toddler years.

can benign ketotic hypoglycemia be treated?
while the condition itself can’t be treated as in it goes away, it is manageable with some amazing tools!

is there anything that makes her symptoms or ‘episodes’ better or worse?
we’ve learned that with any illness {a runny nose can set it off}, it throws her blood sugars WAY off and is often the first indication that she is even getting sick. as mama, it also makes it unsettling because it’s hard to predict when episodes may occur. once she’s sick, we know to be on higher alert, testing her blood sugar more frequently and offering more frequent snacks.

while it’s been a roller coaster, we’re thanking god for the knowledge and expertise of her medical team and in some weird way, the knowledge we had from Zach’s diabetes. she’s such a tough cookie and we’re blessed to be able to offer her the care she needs so she can be safe + healthy!!

we can’t thank y’all enough for the prayers that have lifted us up over the last few months and all of your support!