jmleanz
10-10-2006, 11:28 PM
I finally find my way back :) I kept checking, and then couldn't log in. Re-registered and all is well. Glad everything is back up and running!!!!
I would love input on my Kyle's latest. A couple of things --
first, Kyle finally had his first MRI at 2 years old. The NSG thought his 4th ventricle has been bigger than it should be on both the April CT scan and this September CT. But no change between the two -- just a big 4th ventricle. Kyle has obstructive hydro with a fancy multi-catheter shunt so it sounds like his 4th vent is not optimally tapped. Hence the MRI. (Which in itself was way too stressful -- my baby is back on supplemental oxygen at night and he had to be intubated and knocked for a loop for the MRI). The NSG wants to "clear paths" between his ventricles so they all communicate and Kyle could have a standard shunt. In theory this sounds good, but I feel like if he's not really symptomatic, why do it? Kyle has poor coordination which could be attributed to his damaged cerebellum, brain bleed damage, or his prematurity. He also throws up a lot but he has done this every day of his life. So I'm just reluctant to replace the whole shunt system. However, I realize if it could help him, we'll do it.
And second, Kyle's Neurologist recommended a switch from phenobarb to Keppra to eliminate any sedating effects of the pheno. After his 2nd week of pheno weaning, he practically changed personalities -- completely tense, jumpy and easily startled. So with the neuro's advice we gave him back the pheno and maintained the full Keppra dose, and now he's fine. Anyone have any trouble getting off phenobarb?
Thanks, all. I missed keeping up with the group!
-Janice
Mom to Kyle, former 23-week preemie now 2 years old with obstructive hydrocephalus
I would love input on my Kyle's latest. A couple of things --
first, Kyle finally had his first MRI at 2 years old. The NSG thought his 4th ventricle has been bigger than it should be on both the April CT scan and this September CT. But no change between the two -- just a big 4th ventricle. Kyle has obstructive hydro with a fancy multi-catheter shunt so it sounds like his 4th vent is not optimally tapped. Hence the MRI. (Which in itself was way too stressful -- my baby is back on supplemental oxygen at night and he had to be intubated and knocked for a loop for the MRI). The NSG wants to "clear paths" between his ventricles so they all communicate and Kyle could have a standard shunt. In theory this sounds good, but I feel like if he's not really symptomatic, why do it? Kyle has poor coordination which could be attributed to his damaged cerebellum, brain bleed damage, or his prematurity. He also throws up a lot but he has done this every day of his life. So I'm just reluctant to replace the whole shunt system. However, I realize if it could help him, we'll do it.
And second, Kyle's Neurologist recommended a switch from phenobarb to Keppra to eliminate any sedating effects of the pheno. After his 2nd week of pheno weaning, he practically changed personalities -- completely tense, jumpy and easily startled. So with the neuro's advice we gave him back the pheno and maintained the full Keppra dose, and now he's fine. Anyone have any trouble getting off phenobarb?
Thanks, all. I missed keeping up with the group!
-Janice
Mom to Kyle, former 23-week preemie now 2 years old with obstructive hydrocephalus