It's been a few months since I've written an update on my son Jackson and it's definitely time to fill you in. If you are new to FFP, and unsure of what I'm talking about, you can catch up here and here.
To sum it up in one statement, my sweet 2 (almost 3) year old son has complex partial epilepsy and we don't know what causes it.
We've been dealing with these seizures about every 4-6 weeks for the past 15 months. He's been on medication this whole time and we just keep increasing the dosage. So far we've been working only with neurologists here in Jacksonville. Many people have suggested we get a second opinion and it wasn't until recently that my hubs and I felt the time was right for this.
We put some feelers out among friends, particularly other parents whose kids have special health problems, and kept hearing about the excellent care, resources, technology, etc. at Boston Children's Hospital. Upon further research, we discovered that Boston has one of the top epilepsy centers in the country AND I had a friend whose husband works at the hospital, in a different department, who connected us with the epilepsy team.
After a few more steps in the process over the past 2 months, we find ourselves about to leave for Boston for an appointment with the pediatric epilepsy team. We did some additional testing here in Jax that the specialist requested (thus the Instagram/Facebook posts about another MRI). Things keep coming back normal so we are hopeful this doctor will give us some new insight.
Please keep our family in your prayers this weekend. I don't know what to expect from this trip but am hopeful. Thank you to all those who continue to ask about Jackson and have been praying since daying one.