Our “no seizure” run since December 28th is over. We didn’t make it two months.
Not only that, he was awake. This is the first seizure he has had when he has been awake since Christmas day of 2017 – about 14 months.
As we were sitting on the floor in Daniel’s room waiting for the seizure to stop after we had given the rescue meds, David said, “You can’t put our situation in a box. Whenever we think we have things figured out, they change.”
It’s true. David and I went out yesterday afternoon, and friends watched the kids for us. We assured them it was extremely unlikely that Daniel would have a seizure because he hasn’t had one when awake for over a year, and even then it was only one in 28 months! That is now out the window. It is also out the window that we can leave Daniel alone in his room in the morning when he wakes up early or playing in the loft for a little while by himself. We can’t be lazy. Someone will need to be with him all the time.
This morning Daniel is a mess. The postictal phase (the time after a seizure) leaves him floppy, somewhat confused, irritable and generally difficult. So, we will all be home this morning, cuddling on the couch watching a movie, helping Daniel and helping each other.
As it has been over six months since I last wrote an update, I will try to summarize briefly what has been going on in Daniel’s life since last summer. As you most likely know, we moved back to Rock Hill, South Carolina in August. It was an unexpected move, but was clearly what God was directing us to do especially for provision of medical insurance for Daniel. In an environment where it had been forecast to take 4-6 months for Medicaid to be approved, Daniel was covered within three months, retroactive six months. Amazing!
Daniel began first grade at his new school at the end of August and has been blessed by a wonderful teacher and team of therapists and administrators. While they have missed their peeps from Missouri, both children have continued to prove their resilience and fortitude through yet another adjustment. We have enjoyed living back in the neighborhood we lived in when Hannah came home in 2014. It is a great neighborhood just a half-mile walk from the kids’ school and where the kids can play in the yard, ride bikes and reconnect with old friends and make new ones. We renewed our relationships at the church we used to attend, and have been very blessed by the care of the church family through the fall and winter.
Daniel happily reconnected with his physical therapist from when he was three years old and he has been working hard in PT. We also reconnected with our former pediatrician and neurologist. Daniel enjoyed a break from seizures from June through mid-September, but then they began again and he was having them every 2 or 3 weeks. This was troubling, and definitely impacted him academically and physically. We have seen a decline in his academic performance over the last few months which has been discouraging. His neurologist referred us to an epileptologist – a more specialized neurologist who deals much more in depth with epilepsy.
Daniel’s first appointment with the epileptologist was in mid-December. Honestly, it was a very hard appointment – not for Daniel, as he got to play with a child life specialist, but for me as the doctor and I talked for almost two hours. She explained Daniel’s situation to me in great detail. She reviewed his last MRI, which was from after his first seizure in 2012 when he was 16 months old. Never before had anyone gone over it so carefully with me and I won’t lie, it was crushing. I won’t get into the details, but it explained a lot about the struggles Daniel has.
She also explained epilepsy to me much more, and though Daniel was only officially diagnosed with epilepsy in early 2018, he has had epilepsy since that very first seizure. She explained how his seizures did not really meet the qualifications for complex febrile seizures, or even an amorphous “seizure disorder” as it had been referred to for a few years, but that he has structurally based epilepsy. She also broke the hard news that this kind of epilepsy does not get better, it gets worse. The length of Daniel’s seizures, the extended recovery time for him, and the increase in frequency we had been seeing all put Daniel at higher risk than average for SUDEP, or Sudden Unexplained Death in Epilepsy. She said that it is critically important that we get Daniel’s seizures under control, which means stopped. Coming to grips with the real possibility that Daniel could die in his sleep from a seizure has been a painful process for us. We have precious friends who have lost children, and it is a fearful path that we do not want to have to walk, or the sort of club no one wants to join. I can’t say we have fully come to grips with it yet, but we are moving from a place of abject fear, terror almost, to a perspective of receiving each day as a gift, being grateful for whatever time we have together (hopefully many years ahead of us) and working out our faith at a deeper level. The information gained from this appointment has shifted our focus from cerebral palsy as Daniel’s primary diagnosis, to epilepsy being the top concern. It is certainly the most dangerous of his issues it would seem.
Following the epileptologist appointment Daniel has had a number of tests, such as a sleep study, an overnight EEG, and an MRI. He has added a second seizure medication and we are extremely thankful that he has not had a typical seizure since December 28th. Going on two months without a seizure is wonderful, but there are a number of concerning issues for us. One is that there have been some other things that have been observed in Daniel which may be other kinds of seizure activity – possibly absence seizures and sudden jerks of his legs that he can’t control. Most nights lately we have been able to work out a system where Daniel is getting better sleep, and we think the new medication is helping with that as well. There are some other symptoms that we are pursuing further explanation for. All in all, the last few months have taken us to a new level of concern for Daniel’s well being and brought into question what kind of future he will have. His academic struggles are very frustrating for him and as a result he hates trying to do his reading and math homework. He just can’t seem to recollect words he has learned in isolation when they are in context of other words, and basic math concepts are just terribly difficult for him to recall.
Earlier this week we had a follow up appointment with the sleep medicine doctor and learned that Daniel also has obstructive sleep apnea, and even when we think we’ve gotten a decent night of sleep from him, he has still had multiple issues of breathing obstruction and is not getting sound, restorative sleep. For children this is typically caused by large tonsils, which Daniel clearly has, but cerebral palsy also can contribute to this because of poor muscle control in the throat. We expect he will be having a tonsillectomy sometime in the next couple of months and will hopefully start getting better sleep after that.
For those of you who have been touched by Daniel’s enthusiasm and joyful personality, we would just ask for your support and encouragement, and especially your prayers for him. We pray each night for God’s protection over him while he sleeps and for God to supernaturally not allow any seizure activity in his body. We also pray continually for healing in his brain and body. We know from the Bible that God numbers the hairs on our heads, and he knows where each person will live and the number of their days on this earth. No one is promised long life or complete health. We are promised salvation through faith in Jesus Christ, and I am abundantly grateful that even though 2018 was a terribly difficult year for our family it is also the year that both of our children sought to give Jesus their hearts and receive forgiveness for their sins and salvation through His death and resurrection.
These are hard days, and we find ourselves very sensitive to the pain we see in our world and to fearful valleys that other families are going through with their own sick or dying children, but we live in hope, even as we process fears and feelings and complex realities. Thank you for your loving support and care for our dear boy and for our family.