James' Journey with TSC

Time is continuing to fly by! Just a few weeks ago, James had his seventh EEG after we noticed some odd behavior again. His Nana was once again a rock star and helped make sure he could stay awake until his nap time during the test. Although we are “professionals” at getting the EEGs done at this point, James is not a fan of having to sit while we place electrodes when he’s just ready for a nap.

He managed to get to sleep and stay asleep for the test, and for that we are extremely grateful (for anyone who knows James, sleep is not his strong suit). After all was said and done, he woke up a much happier boy with almost two hours of sleep under his belt. We got cleaned up and went to grab a bite to eat. Unfortunately, while we were out, he did have another seizure… followed by two more in the days that followed.

We notified his neurology team, and they decided that the best course of action was a new medication for his focal activity. So three weeks ago we started this new medication and have been titrating up once a week. This morning was his final dose increase. The new medication has made it a challenging few weeks for James; he’s constantly groggy and just when he adjusts to the new change, we move up the dose. On top of that, he’s getting in several new teeth, so needless to say we are all hanging on to the ride for dear life.

On the positive side of things, it seems like the medication is working and we have not noticed any new seizure activity since he started it! We are also hopeful that he will be able to potentially replace one of his other medications once he shows that he is doing well on this medication. This medication does come with a higher chance of an allergic reaction in the form of a rash, so we are praying that his skin stays clear.

We also had two other specialist appointments: ophthalmology and dermatology. One of James’ other medications requires us to meet with the ophthalmologist every three months to ensure he isn’t having a build up of the medication in his system, usually observed through peripheral blindness. This requires us to travel out of town for evaluation. James did great, and we are pleased to report his vision looks good! On the drive back, James even blessed us with over an hour of giggles as he discovered his feet could now touch the back of the seat in the car.

We also got established with a new dermatologist since his prior dermatologist moved into a research role. His new provider is wonderful and had no concerns for James, so we won’t have to follow up with them for another year! Thankfully, they are also local so we don’t have additional traveling.

In the general news side of things, James is continuing to progress at his own pace in all his therapies, and we are so grateful for his therapists and the early intervention program. As he grows we are able to see the spunky side of his personality and we are so blessed to have him in our family. We also have the blessing of being able to move into a single level home so we don’t have the challenge of several sets of stairs to just leave our home! This is such an exciting time for our family, and we have a renewed sense of hope.

Thank you all for continuing to pray for our family; it really means so much to us for all the support.