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James went to see his neurologist on Tuesday. We’re still playing around with meds and dosages to try to get rid of the infantile spasms. The neuro wants to try increasing the dose of Banzel and weaning off of Clonazepam.
After the neuro, we saw the neuro eye doctor who James started seeing in June. A neuro ophthalmologist is kind of a cross between a neurologist and an eye doctor. They specialize in visual problems that are related to the nervous system and not the eyes themselves. As part of his examination, the doc shined some lights in James’ eyes and noted that James had a little bit of reaction to the lights. He also recommended that we repeat the VEP (Visual Evoked Potential) test that James did back in June.
On Wednesday, Stacy was reading through James’ medical records and noticed that James was diagnosed with quadriplegic cerebral palsy (quad CP) by the neurologist on September 14th. James was also diagnosed with Lenox-Gastaut syndrome (LGS) after his at home VEEG in October. James has seen the neurologist three or four times and he never mentioned either of these diagnoses. Stacy called me at work quite livid and needed to vent, which then got me all upset. How does a doctor diagnose a patient with something and then forget to mention it? If Stacy hadn’t read James’ medical records (do people actually read them) how long would it be before someone told us of the quad CP and LGS diagnoses?
Stacy put a call into the neuro. When he called her back, he explained that yes, James has been diagnosed with quad CP, but not LGS. He went on to say that most cases of infantile spasms (IS) turn into LGS so he might get that diagnosis as he gets older.
As it just so happens, we took James to see a different neurologist this morning. We had been thinking about getting another opinion about James and to see if we’re doing all the right things, or if there were other things we should be doing. James has been battling infantile spasms for over a year now, and nothing that our current neurologist has tried has worked. We just want them to stop!
This new neuro was awesome. It was the usual first time meeting a doc. We went over James medical history, medications, etc. He discussed the ketogenic diet and how it might be beneficial for James. However, if we wanted to try the diet, he recommended that we go see a nutritionist in Boston. This is something we’ll have to discuss. James can sometimes be a bit problematic during a 30-minute drive. How would he do on a 14-hour drive? We could fly, but I couldn’t imagine taking James and all of his stuff, plus our bags and carrying it through an airport. There has to be someone closer, doesn’t there?
This neuro works out of a different hospital than our current neuro, so he is going to contact the other hospital to get the genetic and blood work ups from the NICU to see if there is an underlying condition that might have been missed. He had already received and looked over James’ MRI and he doesn’t think that James had a stroke, but he does think that James’ brain is a little messed up. The “wires” that pass electrical signals throughout the brain are thinner than they should be. He is going to send the MRI to a neurosurgeon to see what he thinks. Is surgery an option to stop James’ seizures/spasms?
We were very impressed with this neurologist. So much so that we think we might continue to see him and stop taking James to his current neurologist. We’ve already scheduled an EEG for this new neurologist on February 15th and then we’ll see him a couple of weeks after that to go over the EEG.
