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Madison Update

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 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, 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!

2 thoughts on “Madison Update”

  1. that's sooooo much better than what we were talking about. I'm glad there's now a gameplan and something for doctor's to follow if this happens again 🙂

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Lisa Martin

Lisa Martin

In April 2006, Lisa began blogging to stay connected with distant relatives and friends. As she delved into blogging, she discovered the potential to assist others by sharing her experiences. Lisa has actively engaged in numerous exclusive media ventures. Notable among these are her participation in events such as the Sony Mommy Bloggers Event, the Pampers Mommy Bloggers Event, the Epson Event in Chicago, the Stouffers Event, a memorable yacht excursion with Lands End, collaborations with 1-800-Baskets, an exclusive tour for bloggers by Mrs. Prindable’s, partnerships with Hallmark, PopCap games, Chicago Cubs Mastercard Priceless Events, and Rug Doctor. In addition, she has collaborated with Nutrisystem on a weight loss initiative, teamed up with Buick and Chevy, and served as a brand ambassador for Sprint. Lisa's collaboration portfolio also extends to Disney, where she has participated in press trips for significant movies such as Frozen, Guardians of the Galaxy, McFarland USA, The Good Dinosaur, The BFG, and Cars 3. Notably, for projects like Frozen, The BFG, and Cars 3, she was granted the privilege of walking the red carpet and conducting interviews with celebrities. The impact of Lisa's blog has gained recognition, with The New York Times referencing her content. Moreover, she has been featured in interviews by respected publications such as the Southtown Star, The Chicago Sun Times, and inside.View Author posts

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