Neurology Follow Up!

It's been 2 weeks since we've been to the Neurologist and started our ACTH shots. The last seizure he had - 12 days ago. We started yesterday morning with an 8:30am EEG at Cook's. This time they didn't use the glue on Jacoby's head, they just used tape and a fancy wrap. After the torture of getting the leads connected, they used the strobe light to stress him out, then followed up with me attempting to get him to calm down, so they could read brain waves in both situations. Of course he was hungry (he's always hungry) so they had me feed him while still hooked up and of course he puked all over himself and me! At least he a had a change of clothes! The great EEG tech washed the rest of the left over glue out of Jacoby's hair with their special shampoo!

We then had an 11am appointment with Dr. McGlothlin the Neurologist. He was amazed with Jacoby's energy and laughter! He said he's physical activity is better than 90% of the kids he see's on ACTH shots. The Dr. wasn't happy with the EEG results. The brain waves are better but not as great as he wanted them to be at this point. So he changed up the dosage and put him on yet another drug - Topamax. This new drug is suppose to help control the seizures as he tapers off the ACTH. What's the side effects of Topamax? The same as ACTH insomnia!!! He never sleeps as it is!!!

We are still waiting on one Lab test to come back. The Dr. is expecting it to be normal. All the test have come back normal with the exception of 2 - Metabolic screen and low copper. These 2 are barely out of the normal range, so we are rerunning these test. Jacoby is becoming a pro at giving blood! We don't go back to the Neurologist for a month and by then we will be done with the ACTH shots! How Jacoby's body reacts after we stop the shots, will help the Dr. in what direction we should go and what test we will start up next.

We are going to see the Ophthalmologist on Tuesday. I'm not looking forward to this trip at all. The MRI showed small optic nerves and what I've read this is not good news. But, I do have great support going with me! I love having my Grannie living close to me again.