Brayden’s days of doctors…
Brayden saw Dr. Im. We are looking for him to be the doctor that will oversee Brayden’s overall care. The pediatrician does “normal” baby things, neurologist works on the seizures, occupational therapist works on head and hand movement, etc. Hopefully Dr. Im will help us make sure we are getting the proper care for Brayden and make sure we have all of the bases covered.
Dr. Im was encouraged to see the Brayden was interactive, making noises and stopping to listen when others were talking. He suggested that we stay with the current plan for Brayden. He also wrote a prescription for Brayden to get a Kid Cart, basically a combo of a stroller/wheelchair (if you have seen Justice Coleman’s, it will be something like that). This device will be made to fit Brayden and his needs. We are not quite sure what is involved in getting one but we will be figuring that out soon.
Brayden had a vision assessment through the state’s blind and vision impairment program. The woman handling the assessment felt as though he is seeing something but very little as this point. She tried several tricks to test his vision, only responded to maybe one or two things. Brayden’s occupational therapist was part of the assessment. She suggested that he could have one visit a week, three times for OT and one for vision therapy, in a month. We have to get the application in and approval from the county/state before we start the vision services.
To explain Brayden’s sight problem…
His eyes are perfectly normal. They function just fine. The nerve (optical nerve), connecting the eye to the brain, that sends the signals to the brain is abnormal and the part of the brain (occipital lobe) that reads those signals is severely abnormal. We have to wait and see if and when Brayden’s brain will compensate and be able to make sense of what the eye is seeing. It seems as though we will not know much until Brayden can communicate better to help us understand what he is actually seeing.
I talked with Brayden's neurologist about the prolonged seizure . We are going up continue with his current seizure medication, Trileptal and add another one, Keppra. We are going to stay about the same amount for the Trileptal. Brayden has reached the maximum dose for that medication without having too many side effects. Then we are going to increase the new med, Keppra, over the next several weeks. At the end of the month we will have an office visit with the neurologist to go over the medications and his seizure treatment.
The neurologist also gave us a prescription for medication that we can give to him in case of another prolonged seizure. We can then treat him at home without having to go to the ER. As we have learned not too many people know what to do with a baby that has neurological problems and seizures.
Hopefully Brayden will adjust well to this new medication and the excitement around here will slow down.