Kamryn's Neurology Appointment

So, we went to see the neurologist Tuesday morning. They performed an EEG and then we had an appointment with our doctor. In the EEG, the technician takes 20+ wires/electrodes and hand places them all over the head with some kind of goopy adhesive-type material, like a super thick hair gel. It takes forever to get them all on, especially with a squirmy 9 month old. We finally got them all attached after dealing with various rogue wires that came off and Kamryn grabbed, taped them all together and onto her back (to get them away from her hands). That in and of itself was an act of congress. Once hooked up, you have to get 25 minutes of data from the electrodes, a long time, but it almost takes the same amount of time just to get hooked up. Kamyrn, bless her heart, was 6 minutes into the session, when she stepped on the wires bounced up and down and pulled about half of them off of her sweet head! So we had to reattach and restart the whole process. Grrr... An hour and a half later, we finally finished our 25 minute EEG, strobe lights and all, and got to progress to the actual doctor to get the results and develop a plan of action.

However, we didn't meet with the doctor, we met with his nurse practitioner (which is kind of better than the neurologist...) She said the EEG looked good...there were high activity spots but the technician said that was when she was being squirmy. So all was good there, no signs of seizure activity in the brain during that 25 minutes. Yea!

Since we're a long way from our last seizure, the doctors are ready to get her off of the phenobarbital. She takes 4 pills a day right now. Each month we'll give her one less pill a day. So, essentially, it will take 4 months to get her off of all of the phenobarb. She is also taking the Trileptol with her phenobarb and will continue to take that medicine. Should she have any breakthrough seizures, we would just increase the amount of Trileptol and continue to back off of the phenobarb. It is going to be a very slow process, but the neurologists want to be careful, because it is such a powerful drug and she's been on it for so long (since birth) that if we were to come off to quickly she would experience a withdrawl.

If all goes well with the phenobarb weaning, a few months later we'll look at weaning off of the Trileptol, but that would be a ways off...

Summary... Things look good and we're backing off the meds. Hopefully with the decrease in drugs and the additional developmental support from ECI, Kamryn will be back on track in no time.

Here are a couple pics of our morning...

Combing the EEG gel-goop out of her hair.

Hooked up to the wires of the EEG. Every white spot on her head is a different electrode. You can't see the wires because they're all running behind her head and being held together there.