Oh the dealings with Abby just don't seem to get any easier.
Woke up on August 1st and was sick, throwing up and blood sugar dropping quickly. I called the Doctor and they said to head to the hospital. We got there and started her on IV fluids and gave her sugars. Her Ketones were high and sugar was low. Her heart rate was fast and her body was done fighting. They decided to admit us and watch her over night, which seems to be what always happens. She is not stable enough to bring home. We stayed for 2 days and during that time she had an X-ray, lots of blood drawn to try to pinpoint the reason it keeps happening. No luck on any test results. She had some rather frightening rectal bleeding while we were there that no one could find a reason for. A week later, all blood results are within normal ranges for the most part.
Then on August 19th, Abby came downstairs and collapsed on the kitchen floor. She was not responding to me and when she would try to open her eyes, they would roll back in her head. I took her blood sugar and it was 38. I moved her to the couch and immediately went into the kitchen to find anything with sugar in it. Abby was awake but not moving or talking to me at this point, so I gave her a Popsicle and a piece of candy to suck on and a glass of Gatorade. I put a call in to the Doctor in which they called back within minutes. The Doctor expressed her concerns with this happening so closely and seems to be getting worse. She wanted to call some Endo docs and see what they wanted to do and call me back. While I was waiting, I got her blood sugar up to 50. At this point she began to throw up. In between throwing up I was still giving sugars to try to maintain her.
The Doctor called back again and said a team of Endocrinologist were waiting for her at the Children's hospital and to head there.
The Endo docs basically said our best chance at treating this is to do preventative measures. I got 2 machines to test her with at home. Her blood ketones, and her blood sugars. We also have to give her 5Tbs or raw corn starch at night before bed. We found the best way to do this is to mix it with Chocolate milk. We have narrowed it down to the part of her body failing her. While she is sleeping her body tries to maintain her blood sugars by grabbing onto her stored sugars and carbs from previous meals. Well Abby's body does not store any...so it starts breaking down other things it is not supposed to. Which in turn makes her body produce Ketones, after so many produce her body goes into ketoacidosis. Well the Ketoacidosis makes her throw up. So all this time we were thinking she was getting a virus and it was making her throw up and drop her blood sugars, when actually she is dropping those sugars at night and by the time she is waking up she is already in the Ketoacidosis phase and that is making her throw up. So we had it all backwards.
Now that we better understand what her body is doing, we are doing our best to prevent it from happening. The Raw corn starch releases slow amounts of carbs into her body through the night and allows her to maintain a semi steady stream of blood sugar. This has proven to be effective so far. We have had only 2 days of low blood sugar and 2 days of Ketones in her blood in the last 11 days or so.
For me though, I don't feel like it is good enough. I want to know what is causing it, and what long term effects it will have, and how long it will last. The Endo docs said there is 500 metabolic disorders it can be and testing can for all these can be exhausting. Their biggest concern is Abby slipping into a coma while she is sleeping from low blood sugar and us not knowing.
Abby has since started losing her hair, she has 3 balding spots on the top of her head and no one can tell us why. I just feel in my heart there is something more that is being over looked or missed.
I just wish we had a better answer.