See Us Back in 2 Months?!?

I feel like today's appointment was a waste of time...

The results from Deacon's 2nd EEG weren't even in the system, and very few results were back from his bloodwork. The doctor asked us the exact same questions the neurologist did at the last appointment regarding milestones and pregnancy history. Most questions we had were answered with "it is so different with every child," "I really can't say," or "we'll need to see test results."

The epileptologist said that b/c we have seen a decrease in spasms on the Topamax, that he would like us to increase his dosage from 30 mg/day to 60 mg/day over the next two weeks and see us back in 2 months!?!

Am I crazy, or does this seem too far??

I was thinking he would say "see you back in 2 weeks" not 2 MONTHS! When I questioned the length of time he told me that basically his schedule is full, and that if it is cryptogenic, as long as we can get the spasms down to 1 every few days, that they usually go away on there own anyways... That contradicts everything I have read online! I thought the whole goal was to get the spasms to STOP COMPLETELY!?!

He said if the Topamax doesn't work that in 2 months we will consider ACTH.

I don't feel like I am hard to please or demanding anything more than what another parent in my shoes would, but I am at a loss...I feel like we have been rushed through every appointment, and that there is no sense of urgency by the doctors to eliminate the spasms. I don't even know where to go from here?? I am totally okay with increasing the dosage to see if it works, but what if it doesn't?? We have to sit around and wait 2 months to try something else??

Doctor Updates

We heard from Deacon's pediatrician today and he received the results from the hospital on both tests.

The good news: the MRI came back normal! No tumors and the brain development is right where it should be for his age.

The not-so-good news: Like we suspected, the EEG was irregular. The doctor didn't have a lot of information, but it looks like seizures and the part of the brain being affected is the occipital lobe. The occipital lobe is in the back of the brain and processes visual information such as colors, shapes, words, and numbers. Whether there is a connection to his glasses, I'm not sure...

Other than that small bit of information, that is all we know for now. They can't put him on any medication until they find out more and we won't find out anything until he has his appointment with the neurologist on Feb. 17th. We also have our meeting with Early Childhood Intervention on Feb. 1st, eye specialist on March 4th, and hearing test on April 13th, all at Texas Children's Hospital.

I'm thinking they might need to reserve us our own parking spot for all the visits we will be making.