The bad news is, he's only had a dozen of so patients with PBS. In 20 years. So he isn't necessarily following closely what little research there is. Which did make us question a few things.
He was happy to see that his kidneys are functioning well so far. And that he does have some abdominal muscles. 4 months old and we have managed to avoid a UTI thus far (probably thanks to daily antibiotics.)
Sort of surprisingly, he said he doesn't really think he needs an abdominoplasty since he does have some muscles. While that would be great because it is major surgery with a rough recovery, our understanding was that it is pretty much always recommended. Without it, PBS children have a tendency to have delayed milestones (sitting, crawling, walking, etc) and a higher tendency toward debilitating scoliosis. They also have more trouble with clearing their lungs, therefore ending up with pneumonia frequently. This can also have a negative impact on GI and urinary issues, though thus far those have been fairly normal for Judah.
He didn't have his records to review prior to the appt, so he will have a better idea of what things look like when we talk to him next month. I handed him 12 CDs full of images and sent 71 pages of notes from Children's National...poor guy. I still need to obtain his records from birth, though I'm not sure they are significantly helpful.
For now, he isn't worried about the lack of urinating at night because he's on prophylactic antibiotics. He did switch his antibiotic for us to one that hopefully is tolerated better by his intestinal tract. He warned kids don't like the taste- so I hope it's a small dose. The pharmacy didn't have it in stock, we are waiting for that to come in.
Unfortunately, there wasn't as much info as we hoped, but I suppose that is hard without looking at his imaging first. He did say that he will perform his cryptochidism surgery around a year, unless another surgery is warranted before then.
The take away was- Yes, we must continue the antibiotics despite the GI complications. And we may be able to avoid surgery for the first year. Overall, not the best news but certainly not the worst!
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