Neurologist follow up

Today JB, Ryan and I went back to the neurologist for some follow up. Dr J made note that Ryan continues to be very visual and interested but very delayed. Of course when asked Ryan refused to do any crawling or cognitive skills he has been displaying recently.
Dr J explained that the EEG was completely normal for a child Ryan's age. He was expecting to see something but there was not the tiniest bit of abnormality, so didn't suggest any further EEG's. The good news was that if Ryan had been having Infantile Spasms then his EEG would have still been very disorganised, so I think we can finally rule out seizure activity for the head drops Ryan has had since birth. Maybe after all they were just a weird presentation of the muscle weakness in his neck.
Dr J was also adamant that we still don't need another MRI. He feels that as Ryans brain was structurally normal at birth anything the MRI would tell us wouldn't change treatment so not worth putting him under sedation for. He also mentioned that as Ryans head size continues to grow at a normal rate then he is surmising that Ryan's brain is continuing to grow. Now I don't totally agree with not doing another MRI, as I feel that Ryans neurological system has done alot of maturing in the last 2 years, and while yes, any answers an MRI would give wouldn't change the final outcome but it would satisfy my curiosity. But that's probably not a great reason for doing sedation so we will wait until we go back in 4 months to see whether Dr J's opinion has changed, in the mean time my curiosity will have to wait too.
We also discussed metabolic diseases, and Dr J ordered some blood tests that Ryan hasn't had yet, specifically a Celiac panel, serum / lactate/ pyruvate, B12 and folate, and some iron tests.


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