We met with the geneticist on Friday and walked away really happy. That is not what I was expecting. I was ready to fight, and I am so glad we are on the same page as the doctor.
What Madison has isn't a disease or anything like that. Instead, when she gets sick, her body starts using her reserves. The problem with that is that she really doesn't have any (or not a lot). That is why her body basically goes a little nuts. Normally, you see this with kids who are sick all the time. Madison is the exact opposite — she never gets sick. Yet, it is still happening to her. Now, they could do a ton of invasive testing (and expensive too), and that still may not tell us exactly what is causing this. Needless to say, we aren't going that route.
We walked away with a game plan which is all Bill and I wanted. First, we are now needing to meet with a dietitian. They are going to teach us to make a concoction (sp?) that she will need to drink when she has the throwing up flu. Little did we know, everything we ever have done (at the advice of the pediatrician) was the exact opposite of what we should have done. We've always been told to give her pedialyte not gatorade. This concoction will have a gatorade base, and I have to go try and find some special sugar. I'm going to run to Walgreens this week and see if they can order it for us. Now, she'll only drink this when she is sick, so that's step one. I also have urine dip sticks that test for ketones. I am now to start testing her urine immediately once she gets sick. Then, we will be able to monitor if her ketones are going up which is what is getting her in trouble. I'll be able to call the pediatrician now and say this is where we started and here's where we are at now. We will have a basis of how bad off she really is. Now, this isn't going to guarantee we won't have another hospital stay. However, there is no way its going to be 3 (aff) days again. Lastly, and almost most importantly, he will be writing a letter now that I will be carrying at all times. It's a letter to give the ER doctor if and when we end up there again. It'll let them know what's going on with her and her treatment protocol. I tried to tell them in Florida what happened when she was 2 (aff), and nobody really would listen to me.
The good thing is that she SHOULD grow out of this in elementary school. However, she may not and may be susceptible when she gets sick to have this happen the rest of her life. I do feel better now that we have a game plan and know what to do next time. We start kindergarten in the fall, so who knows what she'll bring home (aff)!