James' Journey with TSC

It’s hard to believe that just a year ago today James had his first MRI and it gave us the whole world of tuberous sclerosis complex that we never knew existed. It has been a year filled with learning, ups and downs, and connections to special individuals and providers that will likely last a lifetime. Although it’s only been a year since his diagnosis, it will be a lifetime of adjustments for James and our family, both big and small.

Just a couple of days ago, James had his second MRI so that we could check on his brain and make sure that he didn’t have and tubers growing near his brain stem that could cause complications of fluid build up in the brain. If any of you readers have ever had an MRI, you know that you need to hold extremely still for a long time to get good images. You may also know that a 15 month old baby does not know the meaning of “hold still”. In fact, if you asked them to hold still, they would most likely do the opposite purely because they are excited you’re talking to them. The unfortunate solution to this wiggle worm problem is to do the imaging under general anesthesia.

We have continued to be extremely blessed in the providers that have been assigned to care for James. He had the same nurse as the first rescheduled visit who was very kind, and the same wonderful anesthesiologist as the year prior, and a sweet nurse in recovery. The MRI and anesthesia itself went perfectly, and there weren’t any issues. However, most babies (including our James) just have a difficult time waking up from anesthesia. It tends to make them disoriented and very sleepy. James’ grandma came to help with the appointment and wake up, and James was fussy for a few hours after the procedure and then took a solid nap and woke up feeling a little better, but will likely be a little off for another day or so.

Since the MRI was on a Thursday, we expected to not really hear anything about the procedure until the following week, but the blessings continued and James’ neurologist called us at 8:30 p.m. to let us know the results. James does not have a SEGA (subependymal giant cell astrocytoma) or any fluid build up in his brain! Additionally, the subependymal nodules on the inner part of his brain that were noticed on his first MRI have not grown, which is also wonderful news as those can change over time and are the primary reason for follow up MRIs. However, as the brain matures there is more definition in the white and grey matter of the brain, which makes it easier to see cortical tubers. Cortical tubers are in the outer parts of the brain and are responsible for seizure activity. They are formed in utero, and no more form after a baby is born and they won’t change in size as a person grows up. We knew already that James had cortical tubers from his first MRI, but as his brain is a year older now and we can see a little better, his neurologist said he can see James has a “rather extensive burden of cortical tubers” which was slightly discouraging.

James has had his tubers since birth, so there are no new developments, but typically the more cortical tubers someone has the harder time they could have getting their seizures under control. It’s also possible that it is what is hindering some of James’ progress in his milestones. There is still hope though; we have see no seizures since May, praise the Lord!!! We are also trying to wean James off of one of his medications to see if it helps him sleep better. James has shown that he is motivated to move and is continuing to work with his rockstar therapy team to progress in his development. There is also a lot of research progress being made in the realm of TSC, so nothing is guaranteed at this point outcome wise.

So while it has been a year, we are determined to continue to give James the best care possible and help him reach his full potential and beyond. As he went to bed this evening, we sang our bedtime song and it seemed so fitting to share because it so accurately reflects our life and this journey:

“Jesus loves the little children, al the children of the world. Red and yellow, black and white, they are precious in His sight, Jesus loves the little children of the world.”

Thank you all again for your prayers for James this past year, and for all the prayers on his behalf in the future.