First, and foremost:
Thank you!
Thank you for all the love, texts, emails, support and prayers you have sent our way as we traveled to Boston for Jackson's doctor appointment. It means the world to us! We felt your support and truly saw the Lord pour out his goodness on us.
We had an appointment on Friday afternoon with Dr. Peters at the epilepsy center at Boston Children's Hospital to get a second opinion on his seizures and treatment. {To get caught up, read this post.}
Dr. Peters spent 2 hours with us carefully reviewing Jackson's whole history. It was evident he had spent significant time in his chart and knew the situation very well. He assessed Jackson phsycially and even had him run through the hallway, which he loved.
One of the things that Dr. Peters said to us, that I don't think I'll ever forget, is that on paper (before he met Jackson) he was very concerned about Jackson. But after meeting him, assessing him, and seeing his development, his level of concern significantly decreased. He agreed that Jackson is generally a really healthy kid. Yay!!! Just hearing these words was such a relief to us.
We talked about the different potential root causes of Jackson's seizures - major organ/system problem, onset of disease or infection, and genetic/metabolic abnormalities. From all the tests conducted we are fairly certain that Jackson does not have an organ/system abnormality and Dr. Peters agreed. He did not have an infection or disease, based on his "million dollar work-up" of lab work done when he was hospitlized. The last question mark was the possibility of a genetic/metabolic abnormality. We had already done lab work to look for this that all came back negative. The only test we have not done is actual genetic mapping. Our geneticist in Florida didn't recommend it though because it wouldn't really change the treatment plan. Dr. Peters agreed based on the fact that Jackson's development is very normal.
So, it seems like, for now, we still do not know what is causing the seizures.
I know. That's a hard fact to digest. But I do have peace knowing that all signs are pointing to our little man continuing to develop pretty normally.
What we appreciated the most from our appointment was Dr. Peters saying that Jackson's current medication is just not working for him. The goal is to be seizure free and that has never happened. So we discussed, very thoroughly, the medication options we have and potential side effects. We decided that we will be adding another medication to his daily routine in hopes that it will help him become seizure free. If this occurs, then the first medication can be reduced and hopefully eliminated. After a 2 year period of being seizure free, we will talk about taking him off all medication.
So that's where we are at. Overall, we are very glad that we took the trip and met with a physician that was so knowledgeable. It was what I was hoping for from a second opinion.
We're not sure if we will need to go back to Boston, but we certainly enjoyed our time in this beautiful city. Dr. Peters suggested at minimum, we would not need to come back for 6 months, but ultimately he would leave it up to us to determine if we wanted him to continue seeing Jackson. We will continue working with our local neurologist based on the recommendations we received and see what happens.
We also had a lot of fun being tourists in Boston. I'm hoping to write up all we saw, did and ate while there too. It just may take a little while. Mama (me) is pretty tired these days.
Thank you again and again and again for all your support through this process. It's not over, by any means, but I don't know if we would've had the courage to do all this without so many people encouraging us and sharing their experiences. XOXO
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