Aiden continued to meet some milestones but not all & at each well child visit they seemed like it was nothing to be concerned about. I still couldn’t help but feel like there was something we were missing or couldn’t put our finger on. Yet at the time I had to focus on what I did know and what I could do something about. That was … getting ready to move 500 miles away from everyone we love & everything that is familiar.
Aiden was about 9 months old when we moved & to be honest the first few weeks here were filled with the chaos of unpacking, Adam starting a new job, trying to get three kids settled in, finding and enrolling Kaitlin in school and trying to find my way around without getting lost or sobbing while trying to call Adam to help me find my way back home.
A couple of months after we moved here, things with Aiden really took a turn for a road we didn’t expect & to be honest were not prepared for. Seizures. I noticed it one day when I went to get Aiden out of his crib, as I leaned into pick him up he began to shake in a way that can only be described as it looked like he was being electrocuted. I instantly panicked and called the doctor. The nurse was just as concerned as I was and wanted him to come in the next day and be seen.
When we went in to meet with doctor #1 who was at the time his primary doctor, she thought he could be having seizures but was unsure of what could be causing them. To be on the safe side we did a ton of blood work to make sure it was not something with his blood sugar or something else. All of his blood work came back normal & we were back to the drawing board. Then came even more poking and prodding. Aiden had an MRI done & even that wasn’t smooth sailing. Once he was in the recovery room & they took his breathing tube out we had to stay because the poor kid kept having asthma attacks. The reports came back from his MRI that everything was normal. As comforting as that was, it was extremely frustrating for us to know we had to keep putting him through all of these pokes and prods until we figured all of this out.
With all of that coming back normal doctor #1 was feeling out of her comfort zone and was kind of at a loss as to what to do next. So she referred us to doctor #2 who was about an hour away. It took a little while for us to get in to see her & so in the mean time we were playing the all so fun waiting game. It was during this time that Aiden had his most severe seizure to date. The cause behind it was a very rapid spike in his fever & he ended up having a grand maul seizure. All of this was reported to doctor #2 along with every other walk in visit, well child check up, milestone check list, etc.
Before we met with her though, we had to do a 45 minute EEG. As if keeping a toddler awake on a 60 minute car ride during what is normally his nap time is not hard enough, we then had to get him hooked up to all of the electrodes with a nurse who was not good with children at all, then had to get Aiden to sleep for part of the test & then wake him up to do the rest of the test. Super fun times, but the visit wasn’t over yet. We then waited almost an hour before doctor #2 came in to meet with us.
The conversation went like this … “I have watched about 7-10 minutes of his EEG and I didn’t see anything. I think he is normal and there is nothing to be concerned with“. Once that was said she went over his current medications and her recommendations that were to keep an eye on him and to come back if things continued to happen. I at least did get a moment to say “I am very concerned that something isn’t right. He isn’t talking, forming word approximations (momma, dada, etc) like he had been doing. It’s like someone turned the lights out and this is not the same little boy. It’s not normal to go from starting to talk and form words to only sounds and gestures“. Her response was “the reason for him not talking is his pacifier. Remove it and he will talk non stop.” Needless to say I was not accepting her answer or recommendations. Her only other suggestion for Aiden’s seizures and to help him not fall out of his toddler bed at night was to put him on heavy sedatives to make him sleep. I wanted answers & to know how to help him, not a zombie!
Shortly after the visit with doctor #2, we switched Aiden’s primary doctor to someone else. I was getting frustrated with the “I don’t know what to do next” response from doctor #1. So it was time to go back to the drawing board with doctor #3. She is amazing & to this day I am so glad we chose to switch him when we did! She is very intuitive & will only prescribe drugs if there are not other options to try first. THANKFULLY!
She knew right off the bat that something was not right and needed to be done, but she kept an eye on him just to figure out the best plan of action. She did feel that we needed to be seeing a neurologist and I only had to say once that we were not going back to doctor #2 before she said do you mind driving to see someone. Of course we didn’t, we would drive almost anywhere and do anything to have concrete answers. So off we went … three hours away to meet with a pediatric neurologist specialist. She is a hero in our book!
Our first trip down, before we even met with her Aiden did an 8 hour EEG that was monitored by a team the entire time he was hooked up. They watched him on a video feed as well as his brain activity while he was doing different activities. A couple of weeks later we went back down to meet with her. We didn’t know it then, but that day would forever change the course we were on & the answers we would soon have.
Stay tuned for Aiden’s story part 3