Summer is Connor's healthy time, at least it's supposed to be. And really he's had a great summer, but he's been sick...a lot. Right now both ears are draining green gunk, it's his third ear infection since Memorial Day, plus he had Strep May 1st, and that's just spring/summer illnesses, his list from winter was pretty extensive.
I talked to his geneticist and his ENT recently. The ENT is at a loss right now...his ear canals are growing nicely, it's now possible to see his ear drums without too much extra effort (but only with the newborn sized otoscope tip, and it still requires a speculum to see the left). His tubes are still in there, and are functioning (they keep looking like they're going to fall out at any moment, but somehow they stay in). His VPI appears to be spontaneously resolving, there's no sign of it with speech at all, and we haven't noticed outward signs of it with swallow. His submucous cleft appears to be mild (judging by the soft markers, the bifid uvula when he lifts his soft palate for example).
So the ENT doesn't know what to do. There's nothing he can "fix" right now, tubes, check, palate, check, ear canals, check.
The geneticist thinks that we aren't controlling his pulmonary issues well enough, and that the extra effort surrounding pulmo could be impacting his overall immune capacity. I can see that I guess. He's diagnosed as having laryngo tracheo broncho malacia, history of severe dysphagia with aspiration, but all of that is resolving really well on its own. He sees his pulmonologist every 3 months. We have an inhaler to use for acute illnesses, and we did a trial of Singulair but it didn't seem to do much and the behavioral side effects really worried me (although he didn't seem to experience any).
Connor will probably be diagnosed with Reactive Airway Disease, but for now it feels like our hands are tied. He's not aspirating anymore, his malacia is resolving, what else can we do? His O2 sats are always adequate, even when his malacia is flared up and he's retracting, he still keeps his O2 up. But the geneticist seems to think that we're not being aggressive enough with the management of his pulmonary symptoms, and that he exerts too much effort in that area, and it's effecting his other areas (like his ears).
Connor has Primary Immune Deficiency that complicates all of this of course, but his last T-Cell and B-Cell counts were pretty good actually! He has a chronic mild t-cell deficit but his mitogen function is always in the 90s. Basically his immune deficiency is mild enough that it shouldn't be causing all these illnesses. And his anatomy is growing out nicely, it shouldn't be causing all these illnesses.
He gets Vit D supplements, usually 1000 IUs, 1500 when he's sick (he weighs 26lbs and is 3.5 years old). I also give him Vit C and Omegas, but I'm not as consistent with those. He's dairy and soy free and he's low gluten (because his brother has Celiac so all of us are low gluten, his brother is no gluten). He still breastfeeds several times a day. He should be healthier than he is!
What am I missing? We've tried chiro at the first sign of an illness, trying to ward it off. We've done chiro between illnesses.
I talked to his geneticist and his ENT recently. The ENT is at a loss right now...his ear canals are growing nicely, it's now possible to see his ear drums without too much extra effort (but only with the newborn sized otoscope tip, and it still requires a speculum to see the left). His tubes are still in there, and are functioning (they keep looking like they're going to fall out at any moment, but somehow they stay in). His VPI appears to be spontaneously resolving, there's no sign of it with speech at all, and we haven't noticed outward signs of it with swallow. His submucous cleft appears to be mild (judging by the soft markers, the bifid uvula when he lifts his soft palate for example).
So the ENT doesn't know what to do. There's nothing he can "fix" right now, tubes, check, palate, check, ear canals, check.
The geneticist thinks that we aren't controlling his pulmonary issues well enough, and that the extra effort surrounding pulmo could be impacting his overall immune capacity. I can see that I guess. He's diagnosed as having laryngo tracheo broncho malacia, history of severe dysphagia with aspiration, but all of that is resolving really well on its own. He sees his pulmonologist every 3 months. We have an inhaler to use for acute illnesses, and we did a trial of Singulair but it didn't seem to do much and the behavioral side effects really worried me (although he didn't seem to experience any).
Connor will probably be diagnosed with Reactive Airway Disease, but for now it feels like our hands are tied. He's not aspirating anymore, his malacia is resolving, what else can we do? His O2 sats are always adequate, even when his malacia is flared up and he's retracting, he still keeps his O2 up. But the geneticist seems to think that we're not being aggressive enough with the management of his pulmonary symptoms, and that he exerts too much effort in that area, and it's effecting his other areas (like his ears).
Connor has Primary Immune Deficiency that complicates all of this of course, but his last T-Cell and B-Cell counts were pretty good actually! He has a chronic mild t-cell deficit but his mitogen function is always in the 90s. Basically his immune deficiency is mild enough that it shouldn't be causing all these illnesses. And his anatomy is growing out nicely, it shouldn't be causing all these illnesses.
He gets Vit D supplements, usually 1000 IUs, 1500 when he's sick (he weighs 26lbs and is 3.5 years old). I also give him Vit C and Omegas, but I'm not as consistent with those. He's dairy and soy free and he's low gluten (because his brother has Celiac so all of us are low gluten, his brother is no gluten). He still breastfeeds several times a day. He should be healthier than he is!
What am I missing? We've tried chiro at the first sign of an illness, trying to ward it off. We've done chiro between illnesses.
