Thursday, September 01, 2016

Neurology Appointment

Brother and I went to child neurology today. I learned that when a child has meningitis in the neonatal period, there are three possible outcomes:
1. Autism. Check
2. Hydrocephalus. Check
3. Epilepsy. Check (Our newest diagnosis)

I learned about SUDEP- sudden unexplained death in epilepsy. Kiddos with Autism are eight times more likely to die than kids with just epilepsy. Fun.

I learned that Brother is having focalizied seizures. Not sure how many or how often yet. The seizures he had in July were secondary generalized seizures.  The doctor won't know till more tests are run, but he's putting his money on the part of the brain causing the problems to be the brain bleed in the right frontal lobe. It is characteristically seizure producing (is that a word? ) when injured.  He said that iron (from the blood) is really destructive to the brain.

We are going to do a sedated EEG- which won't be an accurate picture, but they will get some readings from it. Alex will NOT tolerate the EEG, so we have to try sedated. 

We reviewed his bleeds- the one in the back left side caused his CVI. Then the shunt failure killed his optic nerve.
I had assumed that the one on the right, in the front, had damaged his speech center. Not so, that isn't where the speech center is located. So our speech delay is autism related not brain injury related.  That does give me hope.

As soon as the EEG is done, we will start him on trileptal. I will have to be sneaky to get it into him, but I'll figure it out. I have been hesitant to start him on meds, but he did say that developmental pediatricians sometimes prescribe this for kids on the spectrum that don't have seizures. In some kids, it helps decrease stimming behaviors. In other kids it causes aggression. We'll see what it does to my sweet boy. 

I love you so much Alex!!!  We'll figure this out, just like everything thing else.

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