Cheyenne got diagnosed with Epilepsy about 18 months ago. In that time, we have certainly learned a ton of new vocabulary. Words like "intractable" (when medication doesn't stop the seizures), "cluster" (3 or more seizures in a 24 hour period), "Post-Ictal" (time immediately following a seizure where the person is responding but in a state of confusion or incoherence), "Clincal seizure vs. seizure" (Clinical is when we can see outward signs/symptoms. Seizure is in the brain only with no outward signs/symptoms presenting) and "bridge medication" (an extra medication (like Ativan) that is supposed to halt seizures after you've experienced a "cluster"). Of course there's also all kinds of new words or tests/scans I had never heard of like Stereo EEG, Diastat/rescue med, PET scan, MEG scan and Ictal/Post-ictal tests. Of all the words we've learned, the scariest is actually an acronym: S.U.D.E.P. This stands for Sudden Unexpected Death in Epilepsy Patients. This is a lot like SIDS, but annually takes more lives than SIDS. They claim that children are less at risk of S.U.D.E.P than adults, but I have a friend who has not one, but TWO, other friends who have lost their children to S.U.D.E.P.
Ever since I heard that word, I have lost sleep at night. I installed a "nanny cam" in Cheyenne's room that I can view on my phone. I watch it religiously when she's in bed. And every morning, when I go to wake Cheyenne up, I will literally hold my breath and say a prayer until I see her squirm as I turn the light on or see her move/breathe as I walk in. EVERY.SINGLE.MORNING....
When we got discharged that Friday from the EMU back in August, a nurse called me about an hour after we got home to tell me the doctor had called in a "bridge medication" (see definition above) for her to use over the weekend. This surprised me because that morning when they discharged us they told me they hadn't seen any seizure activity since the one that occurred around 3:00 Thursday afternoon. When I asked why they called it in, the only thing the nurse told me was they "saw something on the EEG from that morning they didn't like". (Thanks, that's very helpful - not). Later that week, I had Chey at the hospital for yet another test. While waiting in the lobby I saw one of her doctors from the EMU walk past. I said hello and he came over to chat for a minute. In that conversation he told me that on the EEG for the two hours before we left, her brain was "seizing" every 20 MINUTES. So even though I didn't see her have a "clinical seizure", she was seizing a lot. That did not help my sleeping habit one bit!
Following the EMU stay in August, they changed her meds and we thought we were on one that may actually work. She didn't have a seizure for over 2 months. That was the longest time period since her diagnosis. We knew the trip to China and back would throw her body for a loop. What we didn't expect is how badly.
About two weeks after we got home from China, (the Thursday prior to Thanksgiving), Cheyenne started having a seizure a day and twice on Sunday (no pun intended). The Monday of Thanksgiving week, we started another bridge medication...but this time it didn't work. Not only did she still have seizures while on the bridge, but she had one of the longest seizures of that week. We had been in regular contact with her neurologist and at first they were hesitant to do anything differently because of her upcoming Phase 2 testing (January 7th). But when even the bridge didn't work, he decided to increase her meds. Overall this helped for about a week or so but then yesterday she had three seizures within four hours. We took her to Children's ER. At first they were only going to put her on yet another bridge and send her home but I cried and told them I really wasn't comfortable having her home overnight with the frequency so high. I explained my fear of S.U.D.E.P and convinced them to admit her overnight for a video EEG. She had another seizure about an hour later and has had at least three seizures this morning (even after they started their bridge last night). Fortunately, the EEG showed no seizures overnight while sleeping so they reassured us that she is safe to come home today.
I plan to call her neurologist first thing tomorrow and discuss everything with him and/or have him see her ASAP. I'm scared to death that something has changed in her brain and really want them to do another MRI. Even if it's the same, at least I'll have piece of mind about that part. We'll see what happens.
In the meantime, I thought you all would like to see a picture of her Neurosurgeon. When we were scheduled with a Dr. Jesse Michael Skoch, I didn't expect an old man as I believed "Jesse Michael" was a pretty young name. But I did not expect him to be younger than me! He was super nice when we met him and is clearly VERY smart. (I guess you don't get to be a brain surgeon without being super smart.) But this guy, put off part of his medical school so that he could lead research studies at Harvard and Children's has given him his own lab so that he can research and test the ability to use thermal imaging to detect seizures, brain activity, etc. (These pictures actually make him look older than he does in person.)
Dr. Skoch will be admitting us on 1/7/19 for her Phase two testing (as noted in my previous blog). Until then, we will keep monitoring her and hopefully able to get a bridge to work to keep the seizures at bay for the rest of the year.
For now, please keep praying for Cheyenne. Because right now, the only thing giving me reassurance is the hope that she could be seizure free by her 10th birthday!
Ever since I heard that word, I have lost sleep at night. I installed a "nanny cam" in Cheyenne's room that I can view on my phone. I watch it religiously when she's in bed. And every morning, when I go to wake Cheyenne up, I will literally hold my breath and say a prayer until I see her squirm as I turn the light on or see her move/breathe as I walk in. EVERY.SINGLE.MORNING....
When we got discharged that Friday from the EMU back in August, a nurse called me about an hour after we got home to tell me the doctor had called in a "bridge medication" (see definition above) for her to use over the weekend. This surprised me because that morning when they discharged us they told me they hadn't seen any seizure activity since the one that occurred around 3:00 Thursday afternoon. When I asked why they called it in, the only thing the nurse told me was they "saw something on the EEG from that morning they didn't like". (Thanks, that's very helpful - not). Later that week, I had Chey at the hospital for yet another test. While waiting in the lobby I saw one of her doctors from the EMU walk past. I said hello and he came over to chat for a minute. In that conversation he told me that on the EEG for the two hours before we left, her brain was "seizing" every 20 MINUTES. So even though I didn't see her have a "clinical seizure", she was seizing a lot. That did not help my sleeping habit one bit!
Following the EMU stay in August, they changed her meds and we thought we were on one that may actually work. She didn't have a seizure for over 2 months. That was the longest time period since her diagnosis. We knew the trip to China and back would throw her body for a loop. What we didn't expect is how badly.
About two weeks after we got home from China, (the Thursday prior to Thanksgiving), Cheyenne started having a seizure a day and twice on Sunday (no pun intended). The Monday of Thanksgiving week, we started another bridge medication...but this time it didn't work. Not only did she still have seizures while on the bridge, but she had one of the longest seizures of that week. We had been in regular contact with her neurologist and at first they were hesitant to do anything differently because of her upcoming Phase 2 testing (January 7th). But when even the bridge didn't work, he decided to increase her meds. Overall this helped for about a week or so but then yesterday she had three seizures within four hours. We took her to Children's ER. At first they were only going to put her on yet another bridge and send her home but I cried and told them I really wasn't comfortable having her home overnight with the frequency so high. I explained my fear of S.U.D.E.P and convinced them to admit her overnight for a video EEG. She had another seizure about an hour later and has had at least three seizures this morning (even after they started their bridge last night). Fortunately, the EEG showed no seizures overnight while sleeping so they reassured us that she is safe to come home today.
I plan to call her neurologist first thing tomorrow and discuss everything with him and/or have him see her ASAP. I'm scared to death that something has changed in her brain and really want them to do another MRI. Even if it's the same, at least I'll have piece of mind about that part. We'll see what happens.
In the meantime, I thought you all would like to see a picture of her Neurosurgeon. When we were scheduled with a Dr. Jesse Michael Skoch, I didn't expect an old man as I believed "Jesse Michael" was a pretty young name. But I did not expect him to be younger than me! He was super nice when we met him and is clearly VERY smart. (I guess you don't get to be a brain surgeon without being super smart.) But this guy, put off part of his medical school so that he could lead research studies at Harvard and Children's has given him his own lab so that he can research and test the ability to use thermal imaging to detect seizures, brain activity, etc. (These pictures actually make him look older than he does in person.)
Dr. Skoch will be admitting us on 1/7/19 for her Phase two testing (as noted in my previous blog). Until then, we will keep monitoring her and hopefully able to get a bridge to work to keep the seizures at bay for the rest of the year.
For now, please keep praying for Cheyenne. Because right now, the only thing giving me reassurance is the hope that she could be seizure free by her 10th birthday!
