How many diagnoses does it take to diagnose a child?
Weird question huh? I had to think long and hard the other day as I looked at Charlie's list of diagnoses and it dawned on me that I still consider her undiagnosed! How can that be!? Well Charlie's *symptoms* are diagnosed, but we still don't have a reason for her problems and maybe never will. Most of her diagnoses can be attributed to her CP, which is explained by the HIE. But why the HIE? It was never explained. And what the hell kind of seizure disorder does she have? Because this is not "just" seizures. It's something more.
For everyone to ponder over, Charlie's list:
Cerebral Palsy (mixed tone quad)
Hypoxic Ischemic Encephalopathy (severe)
Cortical Vision Impairment (severe)
Microcephaly
Gastroparesis
GERD
Dysphagia
Chronic aspiration
Tracheomalacia
Recurrent pneumonia
Dysautonomia
Seizure disorder
Chronic lung disease
Feeding disorder (no, really!? duh.)
Central, obstructive, and mixed apnea
Neuro-muscular myoclonus
Global developmental delays (another "duh" one)
Nystagmus
Strabismus
Hypotonia
Some of the diagnoses overlap and some are redundant. Still, that's what's on file. They also put some on there that don't apply to her like asthma (nope doesn't have it...but it's probably permanently in her file now because some ER guy tried to pretend he was a pulmonologist) and meconium aspiration syndrome (I think they told us this as a "reason" for her HIE...doesn't make sense since her water was crystal clear, but whatever).
So there you go. My undiagnosed little mystery girl and her 20 "diagnoses".
Weird question huh? I had to think long and hard the other day as I looked at Charlie's list of diagnoses and it dawned on me that I still consider her undiagnosed! How can that be!? Well Charlie's *symptoms* are diagnosed, but we still don't have a reason for her problems and maybe never will. Most of her diagnoses can be attributed to her CP, which is explained by the HIE. But why the HIE? It was never explained. And what the hell kind of seizure disorder does she have? Because this is not "just" seizures. It's something more.
For everyone to ponder over, Charlie's list:
Cerebral Palsy (mixed tone quad)
Hypoxic Ischemic Encephalopathy (severe)
Cortical Vision Impairment (severe)
Microcephaly
Gastroparesis
GERD
Dysphagia
Chronic aspiration
Tracheomalacia
Recurrent pneumonia
Dysautonomia
Seizure disorder
Chronic lung disease
Feeding disorder (no, really!? duh.)
Central, obstructive, and mixed apnea
Neuro-muscular myoclonus
Global developmental delays (another "duh" one)
Nystagmus
Strabismus
Hypotonia
Some of the diagnoses overlap and some are redundant. Still, that's what's on file. They also put some on there that don't apply to her like asthma (nope doesn't have it...but it's probably permanently in her file now because some ER guy tried to pretend he was a pulmonologist) and meconium aspiration syndrome (I think they told us this as a "reason" for her HIE...doesn't make sense since her water was crystal clear, but whatever).
So there you go. My undiagnosed little mystery girl and her 20 "diagnoses".
2 comments:
That's quite a list to have with no good answers. But as long as it gets, I have to say how I appreciate how you share her life not as her diagonises, but as a kid who is loved and nutured.
What Michelle said...
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