KayTar got sick on Friday evening. It started with a little cough and then she woke in the middle of the with a low grade fever and that croupy cough.
Yesterday morning, I tested her urine for ketones and it was only at trace amounts (normal for the morning). A couple of hours later and I tested it again and it was clearly in the LARGE range. I was speechless when the stick turned dark purple. I know I theorized that this is what was happening when she was sick, but to see supporting evidence in my hand was CRAZINESS. We spent the day giving her carbohydrate-rich fluids and even then, she still lapsed back into ketosis more than once, in spite of being well-hydrated and having good, normal glucose levels.
This morning, though, she woke up with hypoglycemic symptoms and I checked her glucose. It was 46, too low, so I gave her Pedialyte through her g-tube. She vomited not long after, probably because of the hypoglycemia, so I gave her Zofran...and retried the Pedialyte a little later. Her glucose levels normalized soon enough. Her morning urine was STRONGLY positive for ketones and it stayed positive until just a short while ago. She's still sick, so we'll be at this for another day at least. I'll probably give her a feed tonight around 2am in hopes that she doesn't bottom out so drastically while she sleeps.
It looks like we just might be on the right track now!
ETA: It worked...I fed her at 2:30 am and this morning her glucose was 72 and her urine only had a small amount of ketones in it. Woohoo!
It does sound that way. It seems like you can manage your way away from an episode, doesn't it?
this is HUGE! I bet you are feeling really good about knowing that you can control this. Fingers crossed for you guys that this IS really it!
Nice detective work, Kyla! lol
Have you looked at glycogen storage disease? It's listed as a genetic cause of ketotic hypoglycemia in young children:
Two bullet points under presentation leap out at me:
"seizures or other manifestations of severe fasting hypoglycemia [...]
episodes of vomiting due to metabolic acidosis, often precipitated by minor illness and accompanied by hypoglycemia." Elsewhere, it says that these vomiting episodes mimic gastroenteritis or pneumonia.
Allison: Yes! We're starting to look into GSD type 0. Our pediatrician is going to go over all this with an endocrinologist too.
Wow! No freakin way! Your peds must just think you totally rock :-)
I love watching you do all this science all by yourself! You're kind of awesome, you know that, Kyla?
You are such a rockstar and such an amazing advocate for your kids
It's like you've got your own little science experiment at home. ;)
You are one awesome mama, Kyla. I was telling Matt all about this the other day and I can totally see this being a big part of your memoir someday.
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