James' Journey with TSC

James had his fifth EEG today. We were informed by the EEG tech that our boy “wins the award for the most EEGs in a short period of time” which isn’t exactly the first award we pictured him winning. However, we are starting to get the hang of them, from bedtimes to strategies to keeping him awake. With the help of his Nana (my mom), we were able to successfully complete his test.

For just over a week and a half James has been on corticosteroids to essentially boost his anti-seizure medication, and it has been nothing short of challenging. He has unfortunately experienced most of the side effects of the medication. He is constantly irritated, has dealt with horrible reflux and constipation, and his sleep has been absolutely terrible. We have been exhausted trying to keep James comfortable day and night while still attending all his necessary appointments.

The entire purpose of the EEG today was to see if his brain patterns had improved enough to start weaning him off the corticosteroids since we no longer see his odd behavior. When we had spoken with his neurologist, we were expecting an answer to this question on Monday, however he was able to call us today to let us know that his EEG looked great! This is such a relief, and starting on Monday we will be able to start bringing down his medication. We are hoping that this shift will also bring some relief to James’ body as well.

We are grateful for all the support from our family, friends, and church. Everyone has been pouring out their prayers and assistance, and we have felt so much love. Please continue to pray for James to feel better, and for his sleep to resume some small semblance of “normal” for his age, as well as for his seizures to stay managed!