*Updated April 2, 2010 with notes from neurologist.*
We went to see a neurologist at the Children’s Memorial Hospital Epilepsy Center in Chicago. She was recommended by Stacy’s Dad’s cousin who is a neurologist at Boston Children’s Hospital. We were just looking for another opinion about James to make sure we are doing everything we should be doing from a neurological standpoint.
Wow is the first word that comes to mind to describe that appointment. Did you read the “What a Quack” post from January? I am trying to figure out which appointment was worse. That one or this one.
The appointment started out like any other appointment with a new doctor that had never seen James. We went over his complete medical history, touched upon Stacy’s and my medical histories. The usual stuff.
We brought a CD with any EEGs and MRIs that were done on James. And this is where things started to go off the rails. She had one of James’ MRIs up on the screen and she pointed to a particular area towards the center of his brain. I am going to get her exact words wrong, but she said something like, “see this area here? It looks like part of his brain is missing. What I would do is take him home and make him as comfortable as possible.”
At this point Stacy was balling. I was trying to hold it together. She basically told us that we should take him home, make him comfortable, and wait for him to die. The neurologist didn’t use those exact words, but that’s what Stacy and I heard. This is the first time any neurologist has ever said that James has part of his brain missing. Was she right? Is James really missing part of his brain? We’re really hoping that she is wrong. We’ll have to talk to James’ regular neurologist to see what he says about this. But damn! What if she is right and James is indeed missing part of his brain? What do we do then? We have a scheduled appointment with our neurologist next week so we will discuss this with him to see what he as to say.
Update:
We received a copy of the neurologist’s report that she sent over to our pediatrician. I will say that it was very thorough. I won’t share the entire report, because it is quite long, and I don’t think anybody would read it. But I do want to share her “Diagnostic Impression”:
“James is a 7 months male with West Syndrome: poorly controlled infantile spasms, hypsarrhythmia and profound neurological deficit due to hypoxic ischemic encephalopathy that predated birth. It was noted at the time of birth that he already has spasticity and stimulation-induced clonic jerks (jitteriness). Lack of fetal movements, similar pattern of abnormal MRI at one day of life and at 6 months of life, acquired microcephaly (34.5 cm @ birth (25-50%) now 39 cm (<<2nd %, 50% for one month old), are consistent with intrauterine insults. It seems he has cortical blindness and hearing deficit. In addition to cortical dysfunction and cerebral atrophy, his brain stem function also appears affected. He has dysphasia, unable to swallow, unable to clear his own secretions, no gag reflex or blink reflex. His infantile spasms have been refractory to ACTH now for 4 weeks of escalating dose. I’d suggest rapid taper of ACTH over the next 2 weeks: ACTH 30 U/day x 3 days, 15 U/day x 3 days, 10 U/day x 3 days then 10 U/every other day for 6 days, then stop. Vigabatrin can be tried in escalating dose: 250 mg QD x 2 days, 250 mg BID x 4 days, then 250mg/500mg for one week, 500mg BID.”
Did you get all that? That’s quite the synopsis of James. And guess what? There was no mention in the above “diagnostic impression” or anywhere else in the report that she sent to the pediatrician that mentions anything about part of his brain missing. Did Stacy and I both misunderstand her? We’re still going to discuss this with our neurologist next week.
