I took Bennett for his pulmonology appointment today. His last one was 6 months ago. At his last appointment, she prescribed him an oral steroid to take whenever he was starting to have respiratory distress and his rescue meds weren't keeping him clear at least 4 hours. The goal was to try to keep him out of the hospital as much as possible because the last two times he was in (May and July), she believes they misdiagnosed his BPD (scarring in his lungs) for pneumonia since they look so similar on x-ray. Well, as you know, he hasn't been in the hospital since July BUT we've had him on four rounds of the oral steroids then. Basically, whenever he gets the slightest cold he ends up needing it. She really wasn't happy with this and said this is way too much steroids for a baby to be taking and a signal that his condition is not well controlled. She also heard wheezing in his lungs and I told her that whenever he's running around and really active, he will get very short of breath and wheeze. She wasn't happy with that either. So, she is doubling the concentration of the inhaled steroid we do in his nebulizer twice a day. Hopefully, this will keep him more open and its less dangerous than the oral steroids.
She also wants to get him tested for Cystic Fibrosis, since he shows several signs of having it - poorly controlled asthma, difficulty growing (more on that in a minute), and excessive amount of bowel movements (he seriously poops 5 times a day). I told her that I tested negative for the gene, but she said that they are discovering new strains that aren't detected by the test they give pregnant women. So, we're going to be taking him for a sweat test to see if possible he has one of those strains of CF. Man, I really hope not. I'm seriously sick to my stomach thinking about it. Anne - HELP!?!
Now, as for the growth, she isn't happy with that either. He was 9kg exactly, which puts him just shy of 20 lbs. He was 29.5 inches long (they use a board that is sooo much more accurate than the line drawing Peds do in the office). Of course, he is still under 1 percentile, but the troubling thing is that he fell from 50th percentile in his weight-to-height ratio at his last visit to between 10 and 15th percentile this appointment. In other words, he's gotten skinnier. Technically, he is failure to thrive. But because of his underlying health conditions, she wants to give it some more time before she officially diagnoses him, to avoid stigma, particularly during school years. So...in addition to pushing Pediasure, we are now supposed to up his bottles from 2 a day to 3 a day and fortify his whole milk with the instant breakfast mix stuff to add calories and nutrients.
On a positive note, she said he is clearly VERY happy. And she was very very pleased with his physical development and was glad that he was getting speech therapy because she could tell just from hearing him that he had low tone in his mouth.
So, there ya have it.