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Alport Syndrome (Follow-Up)

Thanks to everyone who left comments, phone calls and e-mail for us in response to my last post. Joshua is doing much better, and since then Katie’s also gotten that fever (and gotten over it). I’m still pretty sure Joshua has Alport Syndrome, though. This fever was just a fever, but it seems to have caused some symptoms that pretty much only show up if the fever victim has a disease like AS. Prayers are still appreciated. Thanks, everyone.

How the Seitler Family Spent Their Weekend

Nicole and I went to a cute little B&B in Lancaster County for our fifth anniversary, but we had to come home a bit early because Joshua was running a fever of 102°F and wasn’t sleeping. That was Friday, and he was still the same all day Saturday. Round about midnight, Nicole and I were talking over our options, and decided an emergency trip may be in order because his wet diapers left us with the impression that he might have something serious, like a urinary tract infection. However, there’s another reason for this sort of thing… one we didn’t really consider (nor did we want to): The hallmark of Alport syndrome is blood in the urine (hematuria). In boys with X-linked Alport syndrome, hematuria first appears in early childhood and their urine always tests positive for blood. […] The hematuria of Alport syndrome is usually microscopic, meaning it can only be detected with a microscope or a urine dipstick. Sometimes children with Alport Syndrome have brown, pink or red urine (gross hematuria) for several days, associated with a cold or the flu. This gross hematuria eventually stops on its own. It can be frightening, but it is not harmful. Source: Inheritance of Alport Syndrome & Your Child (Renalife) If only we knew this before taking Joshua into the emergency room on Saturday night. It was especially stinging because: we were there till 5:30am Sunday morning, Joshua got a catheter so they could get a urine sample, they told us to come back Sunday afternoon for antibiotics only to tell us at 8:00pm (following a three-hour wait) that it was a 24-hour dosage and they wouldn’t be giving him any then, we had to follow up at the doctor’s office the next day, he needed a 10-day antibiotic prescription, the doctor wants a renal ultrasound this week, and best of all? We have no health insurance. (In a touch of irony, we just couldn’t afford it this year.) So now we’re weighing our options—all of them. This was also a bit of a wake-up call for me personally, because I’ve been living in this sort of “we don’t know if he’s got Alport Syndrome or not” limbo of blissful ignorance. Now I’ve got to wake up and be the responsible daddy, because this is going to be a lifelong battle: the only options for an Alport Syndrome sufferer are dialysis and kidney transplants. There’s no cure (yet). I’m going to be a sporadic blogger for a while (it’s already started, I guess, but this makes it official). We’ve got some things to take care of before I can focus on this blog the way I was for a while there. In particular, we need to secure prayers, health insurance and a good pediatric nephrologist (preferably nearby, like at Johns Hopkins). Right now my greatest temptation is to pull back from everyone around me and just sit quietly in a little bubble of depression and fear. Feelings of inadequacy (a distortion of Phillipians 2:3’s “count others more significant than yourselves”) lead to my believing that people either don’t/wouldn’t care, or that they’d see this as petty compared to what they’re dealing with. Either way, I feel like I’m just whining if I talk about this and I’m honest about how much fear and doubt I’m living with right now. So I just don’t talk about it…and all that does is make things fester inside me. And then I go to work and make comic books, and it all seems so surreal. It’s like amusements are the “important” part of my life (my career), while what are quite possibly life-and-death matters (searching out the latest AS research and good doctors) are relegated to hobby status. We live in a screwed-up world, and some days it leaves me in the fetal position.