Wow! What a trip to Denver! Kellan and I flew out Sunday night after his Baptism, which went great! I never realized how hard it is to fly alone with an infant! Thanks to my new friend Shannon's husband though, he was also on the flight and helped me! We got into Denver around 6:15 and my friend Kyle-Anne and her husband picked us up from the airport. The first thing she told me was that she cancelled her trip to Billings the next day so she could help us get to our appt, etc! How thankful was I!! Monday am we got to Denver Children's at 8:30 for Kellan's 9 am EEG. When he woke that morning he was doing the posturing with his head that was the questionable seizure activity, and I got a pretty good video of it on my cell phone. Of course he didn't do it during the EEG! He hated the whole process of attaching the electrodes (30 some of them!) and cried the whole time, which he NEVER cries! He was hungry and tired, and I finally was able to feed him but couldn't hold him, and he only ate about an ounce and fell asleep.
We got to the neuro office and he ate a little more, then puked on me, quite a bit. You'll see why I mention this later. We saw the neuro nurse practioner first and she spent about an hour with us, taking history and then examining Kellan. During the exam he again began to posture, but again was awake, alert and not obviously seizing. He did it for quite a while with her in the room. Then the doctor came in with the NP and kind of did the same thing-listened to the NP tell her the history, etc. They had had a epileptologist look at his EEG, and he said it was neither normal nor abnormal! What??!! How the heck does that happen? No seizure activity, however, so that's good. I did tell her how he has rolled several time, and she asked if he did it while arching his back during the posturing, which I told her no but she maybe didn't believe me. He proved it to her by rolling from his back to tummy on the exam table! She was very impressed with how strong he is but did admit that he is still low tone and delayed. I told her he sleeps 18-20 hours per day and I believe that is partly why he is so delayed, he's not awake long enought to develop and gain strength. I believe that his sleepiness is may be partly due to the phenobarb. So we talk about reflux and Sandofer's syndrome, which is commonly mistaken for seizures, and she brings up a somewhat new possibility-Paroxysmal Torticollis (see my favorite links). I haven't had a chance to look much up with it yet, but Justin did and says some things are very familiar. The doc says they associate this with migraines in infants. Obviously, they don't know when a baby has a headache, but they do know that small children get vertigo when they get migraines and sometimes will cock their head to either side, no preference, to alleviate the pain and or vertigo. The doc asked if anyone has migraines in the family, and yes, many do, me included. Vomiting also goes along with this, and Kellan will frequently "spit up", but not very often really "throw up". Yesterday he did several times. He also postured most of the morning. Related? I don't know. The doc did watch the video I tookl earlier and she that made her lean farther away from seizures. So after all of the doc's exam, she decided she wanted to do a 4 hour EEG, to see if we could catch these episodes and rule out seizures. And if he didn't do any of it during this EEG, they would want us to come back for a 3 DAY EEG!! She said he makes a good case for all the above, so we need to try to rule out the worst. So Kyle-Anne got to run us to a whole different hospital for the EEG, which thankfully was close to her house so she could go home while we were there. OF COURSE, he did none of the posturing the ENTIRE 4 hours!! He did do some of the smaller things we have noticed, stiffening his arm, etc. The tech told me he was having some weird electrical activity, especially when he was nursing and falling asleep, but not seizures.
After all that, Kyle-Anne took us back to her house and made a very nice dinner, then we headed back to the airport. The flight home was good-the airplane was full and we were in a middle seat between a large woman whose butt was partially in my seat, and a young-ish guy. Kellan was hungry and needed to nurse and I'm thinking my boob is going to be on one of these twos lap! The guy agreed to trade me places but I told him I'd try to get the flight attendant to move me first. They did, we got a whole 3 seats to ourselves in the back of the plane!! By the time we got home it was 11 pm, I was exhausted and had a headache from hell. My mom was here and helped me feed Kellan and stuff before she went home. AAhhh-my nice warm bed!
So this afternoon Amanda, the nurse pract., called with EEG results. Again, she had the epileptologist look at it. Again no seizures, even when he did the arm thing. But he does have epileptiform waves-electrical activity that is not normal and puts a person at higher risk for having seizures, but does not necessarily mean they WILL have them. In patients with these waves they do not medicate, they wait and see what happens. This other doc recommended weaning him slowly off the phenobarb (YEA) and see what happens. I honestly would have probably taken him off it even if they hadn't given the OK, but I'm sure glad they did! It will take 3 weeks to wean him, but I'm so happy we can! Now if he has the big episodes of posturing before Jan. 7, then they will set us up for a 3 day EEG when we go back to Denver for our PT appt. Let's hope not. I can't imagine doing that!
Let me just say the NP and doc there are amazing! Very thorough, attentive, compassionate. I wish I would have had the afternoon to explore the hospital and check out the Special Care clinic-the Down syndrome clinic, but there's always January! From what I saw of the hospital, it was great-very colorful and kid oriented, of course. I highly recommend their services if anyone ever needs it. From the valet to the receptionists to the doctors, very exceptional.
I think that about covers it. We will see about working Kellan up for reflux, or just trying zantac when he stops the phenobarb. I hope everyone is well and ready for Christmas! My kids are very excited, esp because their great-grandparents and cousins on Justin's side are coming!