Well...this has been another little thing that has occupied our winter. Now that the dust is settling a little bit, I can actually write something about it. Here is a synopsis: On Feb 5, I took Finn to our family doctor because he had been complaining of a headache and having this weird facial swelling for the past couple of days. He had also been acting really tired. Our doctor ran tests, and found that he had elevated protein and blood in his urine, and consulted with a Pediatric Nephrologist in Iowa City, who advised us to get in the car and take him there pronto. After testing in the ER, it was determined he was stable and the next day, we met with Dr. Nester, and her nurse, Monica. There, we were told that Finn has Minimal Change Disease, an autoimmune disorder that is rare, but it is the most common kidney disease among children. While he is in nephrotic syndrome, he needs to be on steroids and a low sodium diet. It sounds fairly innocent, but we found that there is sodium in every freaking thing, and when Finn is on the high dose of steroids, he is a little roid rager, and pretty much hates life. It was a long couple of months, and very emotional for me, but Dr. Nester's team is amazing, and really helped us through it, as well as Finn's fantastic teachers who had to join me in counting every milligram of sodium (because they didn't have enough going on in the classroom) as well as reading Finn's moods and helping me navigate the side effects and monitor his blood pressure. Thankfully, Finn responded to the steroids, and his protein levels are back within the normal range. So, now we continue to wean him off of them gradually, and if all goes well, he could be off steroids in June! Then, we live life as normal as possible and try not to think about the fact that around half of the kids with Minimal Change will relapse several times before finally growing out of it. Finn is such a trooper. He and the other kids try to help monitor his "Minnesodium" intake, and he really likes Dr. Nester and the "magic cream" they put on his arms to numb them before drawing blood at the U. All things considered, this is a very manageable disease...especially now that I have my little boy back and can see the light at the end of the tunnel. If you would have told me that in March, I would have punched you in the face. Maybe Finn wasn't the only one who was roid raging???!!??
Finn at our dr's office in Feb. He is normally bouncing off the walls here.
Mike, our PA, looked at him and said, "This is a very sick boy."
This is how Finn's face swells when he is in nephrotic syndrome.
The swelling is concentrated on his eyes and forehead.
Besides the lovely mood swings, the steroids gave Finn moonface.
He's still a cutie, but he really doesn't look anything like my Finn!
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