EEG results

The results of our 24 hour EEG showed that Matthew is having a lot of seizures. We already knew that, however, we learned that his seizures are all over the brain. They used to be mostly in the visual part of his brain.

The doctor suggested that we follow up with an Epilepsy doctor instead of a regular Ped. Neurologist. Epilepsy doctors mostly deal with seizures, Ped. Neuro's deal with anything brain related (headaches, Cerebal Paulsy, etc). He said that Matthew may have to deal with seizures the rest of his life. The dr took him off his Tegatrol. He said that Tegatrol may increase seizures, especially the type that Matthew has. We are also discontinuing the medication that he was put on when we got here from the Ped. Neuro at Children's (Depakote). He said that it doesn't seem to be working and it has bad side effects (1 in 600 get liver damage). We have started a new medication called Banzel. It has been FDA approved for about 1 year now.

The doctor gave us options about a Vagus Nerve Stimulator implant and discussed the Ketogenic Diet. The doctor was very good, I feel very comfortable with him, but he suggested that whom ever we decide to see long term work with us on those options.

The doctor used to work in Birmingham, AL. He was familiar with our Ped. Neuro in Pensacola because Birmingham was the closest Epilepsy doctor to Pensacola. That's a 41/2 drive each way. We are looking into our options about seeing what we can do so Matthew can be followed up by a Ep dr and not have to drive 9 hours round trip, especially because if we do the Vegus nerve or diet, he will have to be monitored very closely.

Opthamologist

One of the many doctors we saw in patient was a opthamologist. When people gather Matthew's history and I explain that he is not tracking/looking at us well, they ask if he's ever seen an opthamologist. I always say no, but nobody ever has followed up with suggesting an exam.

The RN came in the room at 5AM to dilate his eyes and by 610 AM, the opthamolgist came in. I'm sure I looked great. He examined Matthew's eyes and he said there is no damage to his eyes nor any structural damage.

The opthamologist said that Matthew would be a candidate for the organization Center for the Blind. The doctor said he hates the name of the organization because it's for anyone visually impaired.

The organization has already contacted me and they will be coming in my home to do an assessment to see if they will be able to help with visual therapy/activities.

Phoenix Children's~Day 1

Wednesday we got the call that there was a bed available at the Epilepsy unit for us. Once we got checked in and admitted, they started the EEG monitor right away. It was video recorded, so the lights had to be on the whole time, including at night. There was a button I was supposed to push when he would have a seizure, that way when the doctor reviewed the EEG, he could see exactly where the seizures were to help pinpoint them.

Matthew saw several different doctors. He saw a general pediatrician, Epilepsy doctor, eye doctor, several residents and genetics doctor. The genetics doctor wanted to take more samples than we had done in Mobile. Luckily I had a business card for the Genetics doctor we saw in Mobile, so they were able to coordinate. The staff all thought I was very organized. It was luck, I never took the card out of my wallet from the appointment.

Steve came and visited with us for a few hours. The Patient Care Tech sat in our room while Steve and I went to the cafeteria to get dinner (which was pretty good for being hospital food). I was unable to leave Matthew alone at all while he was on the monitors, so if I needed to go get water next door or anything else, I had to call someone in to sit with Matthew. Staff were always nice and made it very easy to ask for help.

Matthew was teething horribly. He cried so much his voice went horse. He didn't mind the EEG electrodes on his head, but he was pretty cranky in the evenings. A social worker came in to see us and Matthew was having a meltdown. I don't know what she really said, but she seemed like she had one foot out the door to go home for the night anyway.

The day flew by, except for the teething meltdowns. We had a room to ourselves, so it was nice not to have to share with another patient. It was set up for two patients, so we had a large room. I had to remember anything I did, was on camera, sound too.


Matthew was not too hungry, but he did drink his milk. Neither Matt nor I slept well that night. He would wake up a lot and I had a hard time sleeping because (1) of the bring lights and (2) random noises/phone ringing/people talking at the nurses station.