I have been waiting for weeks to make this post because I did not want to worry anyone before we had answers, but I would like to share something with all of you because I know you care about Jack and want to know how he's doing. Before you read on, though, I want you all to know that all is good at the "Casa del Hickling," and that Jack is a perfectly happy and healthy boy. It ends up we were worried for no reason. Here's the story ...
Since the day Jack was diagnosed with T21, Robert and I knew (and have talked about MANY times) that there would be bumps along the road during this whirlwind of a journey we are on. Jack has grown and developed so much like any other child (in some areas, even faster than other children) that I couldn't help but find myself almost waiting for, expecting something weird to show up. Well, Jack who always seems to know exactly what Mommy is thinking, only let us wait 7 months for that something weird. Again, I promise everything is fine, just read on ...
On the Monday night before Christmas, we noticed some weird behaviors while Jack was sitting in his highchair eating dinner. About 5 or 6 times within about 10 minutes, Jack tensed up his arms and they would tremor a little bit while he squinted his eyes and then they rolled back into his head. The scariest moment of my life. I was almost certain Jack had just had a seizure. Robert told me to run to get the video camera so we could show a video of it to his dad, who is a Pediatric Neurologist. Completely shocked, I tried not to get too worked up and to give the situation the benefit of the doubt, thinking Korey, you're just overreacting, it's nothing. Please, God, let it be nothing. Jack did this a few more times over the next few days while or shortly after eating. And, despite my prayers for Robert's dad to watch the video and say, "You all are just overreacting," he instead said, "That looks like a complex partial seizure." Wham, dagger to my heart. I couldn't even breathe. Why this? Why now? I can handle Down Syndrome, but God, I don't think I can handle epilepsy. (For those of you who don't know much about seizures, if frequent enough they can cause brain damage, leading to developmental delays. My little boy already has the cards stacked against him. How would we deal with this too?) I often don't even think of Jack as having Down Syndrome because he's just like any other baby to me, but this brought it all right back into the foreground. Our first bump.
Unless you have children, you cannot begin to imagine the pain, helplessness, and absolute sickening feeling you get when you think something is wrong with your child. Here we are, just having gotten used to this whole Down Syndrome thing, and now we're facing this too?!?! So not fair. The only other time I've ever felt so indescribably scared was when my father was dying of cancer nearly 7 years ago. I started to think, how much can one person take?
The following Wednesday after the "event," Robert's dad (Bill) did an EEG on Jack (to measure/analyze his brain wave activity) at his office. We fed Jack during the EEG but, of course, he did not have an "episode." Bill did say, however, that he usually (but not all time) sees "inter-ictal" activity on EEGs of children with epilepsy even when they're not actively seizing. Also, Jack fell asleep during the EEG and his results showed "normal sleep spindles," and Bill typically sees seizure spikes during sleep in epilepsy patients, because the brain is less inhibited during sleep. Also, since his "episodes" happened mainly while eating, Bill proposed that it might just be a weird reaction to reflux (GERD). Interesting theory, we thought, but Jack hardly ever spits up. And, wouldn't we have known before 7 months of age that he had reflux?!?!? But it was worth investigating, so we got a GI consult the next week. Whew ... we were a little encouraged by all this, although not completely out of the woods. Bill was still not 100% sure that Jack was not having seizures.
The GI specialist was not very convinced that Jack had reflux (for the same reasons we weren't) but he sent Jack for an "Upper GI" series (basically, videos of Jack's esophagus and tummy while he drank Barium from a bottle ... yummy, huh?). Jack's gastrointestinal anatomy is completely normal, which was nice to know since many children with Down Syndrome can have GI abnormalities. And, at the end of the study, what do ya know? Jack refluxed! So, he was diagnosed with GERD. Seizure disorder, no can do. But, reflux? Yes, please! And, I'll take it with a side of Prevacid, thank you very much!
Despite ths diagnosis and the fact that Jack's "episodes" have been less frequent and less intense since starting Prevacid, Bill still wanted to go ahead with a prolonged EEG to rule out seizures altogether. Being the patient's grandfather, he was having trouble staying objective about it all and wanted final answers. So, last Tuesday Mommy, Daddy, and Jack were admitted to Baptist Hospital in Winston-Salem for a 24-hour (or potentially 72-hour) video EEG in the EMU (Epilepsy Monitoring Unit). This entailed Jack getting 22 probes glued (literally) to his head and then his head wrapped in gauze. These electrodes were connected by wires to a box that was continuously plugged in the wall, which made it quite difficult to maneuver in our tight hospital room (that housed a hospital bed, a cot, AND a crib). We were also given a button to push when we thought Jack was having one of his "events" so they could tag it on the EEG. Jack did a few of his funny things while we were there (but not any of the eye rolling like the first couple of times), but we felt that they had sufficient data to determine if Jack had epilepsy. The staff were all really friendly and the experience, I guess, was as good as could be expected. Jack HATED getting the probes attached, and the poor baby screamed during that whole process. (This broke my heart, but I tried to transform into "nurse mode" and keep it together!) Once the probes were on though, Jack was such a little trooper (as usual), and they didn't seem to bother him at all! He didn't sleep well at all the night we were there, though. He only slept from 9pm until 2am before awakening and "talking" while looking around at all the "cool" new things in our hospital room. It was frustrating to be up at that time, but all in all it was pretty darn cute, because he wasn't crying or fussing at all, just taking in all the new stuff around him. Such a sweet baby. I was so very proud of how he handled it all. It was a difficult 24 hours, but it was all worth knowing that my little boy's alright.
The next day in the hospital, the neurologist came into to examine Jack and tell us that his continuous EEG was completely NORMAL!!! Another whew! Deep sigh of relief! She was very enamoured of Jack as well, asking me while he sat and played with her if we were sure he didn't have DS Mosaicism rather than full Down Syndrome because he seemed so high functioning. After weeks of torment and fear, these words and knowing his EEG was normal put a huge smile on this Mommy's face!
So, it appears that Jack's "episodes" are quite possibly (a) just a "Jack thing" or (b) just GERD. Really? GERD can cause all that trouble?!?! Who would've thunk it? Jack's been doing better on the Prevacid (less "events," but strangely he's spitting up more. Not sure what that's all about.) Our little man is back to usual jolly adorable self, sleeping through the nights and making Mommy and Daddy smile by day. We feel so ever grateful to everyone who has helped us throughout the last few weeks. Our families have been incredibly supportive and caring, always calling to check in on Jackers. Obviously, huge thanks to Robert's dad, without whom we wouldn't have gotten answers nearly as quickly as we did. (Thanks, Pops!) Our coworkers have been more than supportive by being so understanding about it all and allowing us time off as we needed it. Lisa from the Family Support Network and Jane from the CDSA, you ladies were very kind and uplifting during our several phone calls. My dear friends, you all were great too. We couldn't do all that we do for Jack alone. And to those of you who haven't heard from us in a while, I'm very sorry. We weren't trying to be bad friends, we just had a lot going on personally and really needed to focus on our family and our health. And, we didn't want to worry anyone until we had answers.
I'd also like to thank my husband who is my best friend, my rock, my shoulder to cry on, and my complete confidant. Stressful situations can often pull families apart, but this just brought us closer. Robert, you a wonderful man and an absolutely amazing father. I love how you light up and get the most genuine little tears in your eyes when you see Jack or even just talk about him. I love how when you get home from work you bypass me to kiss the baby before me. It's too cute! And, I love how these past couple weeks has strengthened our family bond even more. And, I am more certain now than ever before that this bond is truly unbreakable. I love our family, and I wouldn't change it for the world.
So, our first bump in the road ended up thankfully just being a small one, and all we needed to fix it was a little pink tablet that we have to give Jack every day. Here's to hoping the next bump is miles and miles away ...