James' Journey with TSC

April came and went in a flurry of activity for the Maxey family. James is still doing his various therapies three times a week, and we have also started doing a caregiver and child music class for him as well once a week that he is really enjoying. Not to mention, he got to experience sledding in the snow for the first time and a few days later got to put his feet on the sand at the beach (he was not a fan). He also had a few different medical changes that kept us constantly busy.

James had EEG number six (6) on April 8. He had a hard time staying asleep this time, but we were ultimately able to get the test done. He even giggled during the flashing light test, which gave a little peace of mind that he didn’t hate the entire thing. After that, we met with his neurologist and discussed how he was doing. At first glance, it seemed that his report was better, but later it showed that he was still very much at risk for some focal activity.

After much deliberation, we decided to try and wean him off of one of his medications very slowly in hopes that it would improve his sleep. In theory, the remaining medication should be able to treat both his infantile spasms and focal seizures; heavy on the “in theory”. In the first week, we didn’t see much change in anything, so we continued. In the second week, James turned into a very grumpy baby. He was working on getting some teeth in, so at first we attributed his behavior to teething, then had him checked for a potential ear ache, which turned up nothing.

We started to notice some concerning activity again as well while trying to figure out the cause of his fussiness and decided with his neurologist to raise his medication back up to the full dose for his weight. Having his seizures under control would far outweigh the test to see IF removing the medication helped his sleep. Ongoing seizures would not provide him with quality rest.

Unfortunately, we continued to see some odd activity even after increasing his medication, including some that we could fully identify as seizures and one that is suspected to be infantile spasms. We are raising his other medication to the maximum dose, and going to be doing another EEG for him in two weeks to see if the combination of medications will have a positive effect on his brain activity.

Despite all his challenges, James is continuing to progress at his own pace with his therapy. He is now able to sit by himself and is starting to be able to bring food to his mouth as well! We are so proud of him, and as he comes up on his first birthday within the week we can’t help but hope for an even brighter future for him than what we think is possible.

That being said, our whole family is feeling very tired from being on edge with these seizures, and could very much use your continued prayers. We would love to see these medications work for him so we don’t have to consider other options, but are trusting that the Lord has the best plan for our little one. He has all of this in His hands, as hard as it can be at times to remember that.