Latest Update From the Pediatricians Office

Unfortunately, I have some more bad and worrying news. More on that in a minute.

Thank you all again for your support and care during this time. Please know that even if we don’t manage to respond to people individually, we are thankful for each and every visit, call and email which so many of you have sent our way over the past three weeks or so.

First, for anyone who wants to know more, one of the best websites we’ve found on the subject, the Johns Hopkins Vasculitis Center’s page on HSP.

Meredith was released from the hospital (again) on Thursday, April 10. We thought they were going to keep her longer, but the consensus between the general peds doctor and the GI specialist which they brought in as a consultant was that we already know what we’re dealing with here, and how to treat it. There haven’t been any truly unusual complications (though every doctor we speak with now will admit that Meredith has had a more-difficult-than-usual case of HSP), and so once she’s tolerating oral steroids again (which is what helps heal her stomach and allows her to tolerate food and drink), there’s really no reason to keep her in the hospital.

And, frankly, each time we’ve gone to the hospital, Meredith has perked up considerably after only a short time (usually less than 24 hours) on the IV fluids and steroids. She’s not necessarily healed that quickly, but she feels as if she is, so she gets restless and bored, sitting in her hospital bed with only a TV, some coloring and reading books, a couple of games, and either mom or dad. Not very exciting for a girl who feels much more healthy than she is. I think only the fatigue reminds her that she’s still sick, once she gets some of those IV fluids and steroids under her belt.

Anyway, after the consensus of the doctors was that she seemed to be tolerating both the oral version of her steroids (which had been increased in dosage this time, because they were surprised that the HSP had come back a third time) as well as food and drink, we left on Thursday, mid-day. Once again, Beth’s mom, Pat, has been an invaluable help, holding us together, keeping Jack within a semblance of normal life, and generally pitching in more than we had any right to expect.

Today was Meredith’s first scheduled visit to our pediatrician’s office. I think, after I read them the riot act over the administrative screw-up the last time Meredith needed hospitalization, they must have red-flagged our file, because everyone seemed to know exactly what was going on with Meredith this time. We were expecting this to be a rather routine visit, since Meredith hadn’t been complaining of any stomach pain, but when they did a quick urinalysis, the doctor found both blood and protein. That means that her kidneys are now being affected by the HSP, when previously, throughout all our outpatient and hospital tests of her urine, they hadn’t been. Although we were assured, by our pediatrician (through a couple of quick calls to a two different nephrologists) that kidney involvement wasn’t necessarily unusual or cause for alarm, we are more worried now than we have been at any time in the past with this illness. Kidney involvement is the one area we’d avoided up until now, and it’s also the one area with regard to HSP where the worst stories are. 

Though it’s rare, even among the people with HSP who do have kidney trouble as a symptom, the worst-case scenario can be kidney failure, renal failure. I don’t even want to think about that, but both of us are worried due to the apparent severity Meredith’s course of this illness has already taken. For right now, the effect (though this could also be simply caused by the increased steroid dose) is hightened blood pressure. Our pediatrician prescribed Meredith Norvasc, which is like Lipitor – i.e. something usually taken by 55-yearl old men who’ve existed primarily on a diet of bacon grease for most of their lives, not seven-year old girls. So now, Meredith is taking Norvasc, Prednisone, Lortab for pain as needed (hydrocodone liquid) and Prilosec for stomach upset. Damn.

In terms of the kidneys, we are scheduled to return to the pediatrician’s for labs – much more complete urinalysis and blood work – to see what the baseline for the kidney involvement is, and whether it’s moved from today. We’ll know more then.