Chase's Journey with Infantile Spasms : The Next Bump in the Road

On October 22, we went back to the Mayo Clinic for another EEG and meeting with the neurologists. We were feeling wonderful because we knew the spasms had stopped and Chase was already changing so much. That day, Chase had blood work done to test his cortisol levels while we were there (since ACTH suppresses cortisol production and they had to be sure this was rising since tapering from the ACTH so that his body could fight infection again). We also had to meet with the nephrology (kidney) doctor since Chase had consistent high blood pressure while on the ACTH. The cortisol was low so needed monitoring, but his blood pressure was going back to normal. Chase also had to have a vision exam after taking Sabril, but he passed that with flying colors. Whew.

A few hours after the EEG we met with the Neurologists and they gave us some news we weren't expecting. Chase did sleep for this test (unlike last time) and they were able to see he had activity consistent with a focal or generalized seizure disorder. The good news is that these type of seizures were obviously not as destructive to the brain as infantile spasms, and they could pinpoint exactly where in the brain this was occurring so it should be easier to get under control with medication. But this was not what we wanted to hear, so soon. We wanted to hear that he was free and clear of any problems and this was the end of our journey and everything would return back to normal. "We just do not know how his development will be", is what they said. "We will do everything to give him the best shot at life that HE can have." The conversation about where he was at with his development and his future was not sounding so positive anymore, and Tom and I were back on the next drop of our roller coaster ride. Chase would remain on the Topomax and we would return in one month for another EEG and evaluation.