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??
1 month ago