Pediatric Epileptologist Visit

Today Rayleigh had her first visit with our state's only pediatric epileptologist, Dr. Ng. We started out with about 20 minutes of her history: full term birth, no complications, home at 2 days old, when we noticed seizures, when we got diagnosis, that they were originally tonic-clonic seizures, that they've changed just about every single time we've changed medicines, what medicines she's been on, that she's now no longer having infantile spasms but she is back to having partial seizures, that she's on the Keto Diet, that she's taking Clobozam and Vimpat and we've got planned for the future as far as upcoming MRIs and such.

Wow.

Dr. Ng is better at explaining things than we expected him to be. He's also very good at having a long-term plan as well as a start-right-now plan. He is more aggressive than Bug's pediatric neurologist but we were told to expect that. He's also good at giving facts, statistics and percentages which we like.

It's been 2 weeks since we raised the Vimpat levels last time and we haven't really noticed much of a change. Dr. Ng prescribed going up on the Vimpat to 1 1/2 pills twice a day starting tomorrow morning (we were at 1 morning, 1 1/2 night), this will be as high on the Vimpat as she can go.

If in 2 weeks we do not see a significant decrease in seizures, he prescribed Lamictal. We have to work our way up to the full dose of Lamictal very slowly for Bug. Lamictal has only one major side-effect that happens to about 1 in 10,000 patients: a possibly fatal rash. We can decrease the chances of the rash even more than that by starting her off very small on the dose and working her way, over 3 months, up to the full dose. He said that it shouldn't cause drowsiness, irritability or many other side effects that are associated with anti-convulsants and it is a very successful drug in seizure control.

Dr. Ng's office is scheduling an EEG through their hospital for him to have a fresh look at her brain activity and he will add his name to see the results of her upcoming EEG that will be scheduled through her neuro. Other than that, he had us go down to labs to check gluclose levels and that's it for today. We see him again in 3 months along with a geneticist in his department.