Daniel’s Seizures

Daniel’s seizures have been quite a distraction lately. They have been surprising, confusing, concerning and far too frequent. The game has definitely changed for us, and we are on high alert constantly, which is quite draining. I thought I would write about our experience with Daniel’s seizures to help others understand and to process and document for ourselves.

Daniel’s seizures have always been atypical. His first seizure was at 16 months of age, in August of 2012, when he was sick and had a very high fever. Febrile seizures in children are relatively common. (Febrile means having or showing symptoms of a fever. Here is a link with interesting information about febrile seizures.) These seizures are frightening, but they typically are fairly short and resolve on their own. Daniel’s seizure did not stop until we were in the ambulance on the way to the hospital after two doses of valium had been administered. The seizure lasted around 30 minutes. This is a very long seizure, and dangerous. Seizures are often described as the brain “resetting itself” and are not considered dangerous, because typically they stop within a few seconds or a minute or two. Seizures that go on for a long period of time can cause brain damage. At that time, Daniel’s seizure was described by some as a complex febrile seizure, but his neurologist felt that Daniel’s seizure was different and believed we would see more of them. She was concerned that Daniel’s seizure, though triggered by high fever, did not really fit the febrile seizure profile. It turns out she was right, but it has taken almost six years to reach certainty about it. (Here is a link to information about Types of Seizures.) We were given some basic seizure training, and Daniel was prescribed Diastat, an emergency seizure rescue medication, which we were to keep with us at all times.

Daniel’s next seizure was a year later, in July 2013, again during a time of sickness. Actually, we then learned that a seizure can be the first sign of sickness coming on. We used the Diastat, and the seizure did resolve over 10-15 minutes. Again a year went by between seizures, and then at the end of July 2014 he had seizures two days in a row, during a time of sickness with very high fever. During some of this time he was on a daily seizure medication called Keppra. We didn’t like the Keppra because it affected Daniel’s behavior, and it also didn’t prevent the seizures that came when he was sick. We decided to go without the Keppra since we didn’t want to medicate him daily for something that happened once a year and we didn’t like the behavioral effects. For over a year Daniel was not on a daily seizure medication and he did not have any seizures except when he was sick with a fever. However, in February 2016 he started having seizures monthly. He was in a preschool where kids often came in when they were sick, and he got sick over and over again. We attributed the seizures to his illnesses and continued to hope they were of the complex febrile variety. But in May he had a seizure while he was outside riding his tractor. His personal care aide was with him, thankfully, and the seizure responded to the Diastat. However, he was not sick and did not become sick. In July, he had a seizure during the opening exercises of Vacation Bible School. We administered the Diastat within two-three minutes of the start of the seizure, but the seizure did not respond well and when he was still seizing 25 minutes later the paramedics were called and we went to the hospital. Daniel did quite a bit of throwing up in the ER that evening and we ended up concluding that he was sick. However, by this time we had begun discussing the situation with his neurologist and Daniel was put back on Keppra. We moved to Missouri a month later in August 2016 while his Keppra dosage was still being regulated. We moved into a house with a pool which the kids were very excited about, but two days in a row Daniel had a seizure right after getting into the pool and we learned that a rapid drop in body temperature could trigger a seizure just like a rapid rise in temperature. We got in to see a new neurologist at St. Louis Children’s Hospital as quickly as we could and Daniel’s dosage of Keppra was increased. So did his behavior challenges, but we saw no seizure activity for 14 months until November, just two months ago.

This seizure in November really took us by surprise. I guess we had gotten complacent since we had been over a year without seizures and we hoped that Daniel had outgrown febrile seizures as many children do. As others had been, that seizure was associated with illness and fever spike as well, but because I was alone with Daniel at the time, was woken up by the seizure, and was being vomited on repeatedly, I did not get the Diastat into Daniel until after the seizure had been underway for several minutes. The seizure progressed instead of responding to the Diastat and after the paramedics arrived they administered two more doses of medication before the seizure stopped, then Daniel began to suffer respiratory distress. This whole experience was almost as scary as the first seizure he had ever had and led to further discussions with neurologists in the hospital and with Daniel’s own neurologist. We ended up deciding to change seizure medications from Keppra to Trileptal and then proceeded to make that transition over the next 9 weeks. During that time though, Daniel had another seizure which took place on Christmas Day. Daniel was not sick and did not become sick later. This was troubling. Seizures associated with illness/fever could be explained. Seizures that are not provoked or have no identifiable trigger do not support a diagnosis of  febrile seizures or an “unspecified seizure disorder”, as we had been referring to Daniel’s situation in recent years.

On January 9th, Daniel had another seizure which at the time seemed unprovoked, but the next day Daniel developed a high fever and ended up having the flu. Over a week later, after his fever had been gone for a couple of days and he had returned to school, he had another seizure the evening of January 17th. He was asleep in bed and had a new type of seizure that we had not observed before. In the past Daniel’s seizures have always been on the left side of his body and progress from the side of his mouth to his eyes, his head and neck, then his left arm and eventually left leg if the seizure is not stopped before then. This seizure seemed to involve both sides of his body and he seemed to be unable to breathe. This went on for about a minute and his face began to turn a bit grey in color. He was not vomiting, but copious amounts of saliva ran out of his mouth. His whole body was stiff and I struggled with getting his sleeper off to administer the Diastat. But then, suddenly, before the Diastat really had time to take effect, Daniel was alert and oriented and the seizure had stopped. However, Daniel could not speak normally. It seemed the left side of his tongue was paralyzed or something and his face was not symmetrical and the left side was drooping. The paramedics looked him over and we all discussed Daniel’s situation and presentation and all concurred that he needed to go to the hospital for assessment. We were all concerned that given the completely new presentation that perhaps Daniel was having some sort of stroke. Daniel was awake and conversant for the next three hours, with varying degrees of intelligibility and coherence. At some moments he could spell his name, at other moments he couldn’t. This was also very unusual for him. Typically the Diastat makes Daniel drowsy for quite a while after a seizure. This time it didn’t seem to affect him until about 10:30 or 10:45 p.m. when he finally fell asleep in the emergency room. It had already been decided that he would be admitted to the neurology floor overnight for observation and when they got us up there they tried to wake Daniel up to examine him. It took fifteen minutes to wake him up, calling his name, rubbing his limbs, pressing on his nail beds, roughly rubbing his chest. Finally he groggily came around enough to be examined. Even this was so different from what we had seen before.

Finally, late the next afternoon, two neurologists came to see us and to examine Daniel. They graciously stayed a long time, explaining things and answering our questions. They explained the nature of Daniel’s seizures, how they relate to his brain injury before birth, and how it is determined if a medication is effective or has failed. They also explained why Keppra is often the medication of choice in spite of the behavioral side effects, and how medications are selected for use then in order of their effectiveness and side effects, which can end up causing damage to other systems of the body.  This was all useful information and important for us to know though some of it was not terribly encouraging. They raised Daniel’s new seizure medication to the highest dose for his age/weight and said we’ll give it a few weeks at this level to see if it will be effective in preventing seizures for Daniel. They also explained that at this point, Daniel’s diagnosis is epilepsy. Epilepsy is diagnosed when a patient has two or more unprovoked seizures, which is the case now with Daniel. This makes us sad. We kept looking for the reason behind each seizure hoping that this would not be the case, hoping that Daniel would not be one of the children with cerebral palsy who would develop epilepsy. The diagnosis, however, really doesn’t change anything. It simply puts a name to what already is, and even though we are sad that it is the case, having the diagnosis gives us the ability to find out more information, to know what to look for, and of course, to ask more questions. We have already caught ourselves asking questions like “what does this mean for him?”, “will he not be able to drive?”, “what about his independence?”. This is natural I think, but not especially helpful at this point. Fear is crouching at my door, I can feel it, but I must not let it consume me. I believe in and serve an almighty God. A God who named Daniel eight years before he was born. A God who arranged Daniel’s birth exactly one year to the day from corporate prayer that God would give us a child. A God who made some seemingly impossible things to happen which allowed Daniel even to be conceived. A God who saves, heals, delivers and protects. I trust Him. I am anxious sometimes. I worry sometimes that we’ll miss a seizure while we are all sleeping, but ultimately I sleep at night because I entrust each of us to our loving God and I trust Him to wake us. We are careful – we use a video monitor whenever Daniel is sleeping, we train all of his babysitters before we go out, we check in with him often, maybe too often, but ultimately we know that we do not have control over this and we can live in fear and near panic, or we can be at peace trusting in God’s care. This is what we choose day by day.

December (Oops, make that January) Update

An update on Daniel’s progress is long overdue! November was a bit more eventful than we would have liked with a complicated seizure event which landed us in the hospital for a few days. This was Daniel’s first seizure in over 14 months and was a big disappointment for us. A switch in seizure medicine was prompted by this event, but was something we had been considering for a while because of the behavioral side effects of the original medicine. The switch is a 9 week process of gradually ramping up the new medication and then gradually stepping off the original medicine. We have seen a lot of tiredness and complaints of not feeling well and a lot of difficult behavior during this process. In another three weeks Daniel should be completely switched over to the new medicine and we are hopeful that getting the first medicine out of his system will be helpful with some of his behavior challenges.IMG_6865

The week after Daniel’s seizure, we had his four month follow-up with Dr. Park, the surgeon who performed the SDR surgery in July. This was actually a fun time, because we were able to visit with people who had been in the hospital with us back in the summer. Kerry is an adult who is recovering from her surgery and doing so amazingly well. Daniel and Kerry had their physical therapy evaluations together and that was really fun. Lots of laughter and cheering one another on, as well as celebrating each others progress. Little Charlotte, also in the picture to the left was there for her pre-surgery evaluation and was waiting for her surgery a few days later. img_6871.jpg

We also got to visit with Noah and his parents for a while at the hospital and met up for dinner a couple of days later.  There is a real camaraderie and understanding between the individuals and families who have gone through this fairly unusual process.

Dr. Park was comfortable with Daniel’s progress and was optimistic that Daniel will walk eventually. He encouraged us to push Daniel harder and make him walk more. We have often not pushed Daniel hard enough, and need to be more diligent and more deliberate in his exercising at home. This is a hard balance to strike, as Daniel is often tired, especially now with the medication change and with early morning therapy three days weekly. Sometimes it feels like a catch 22 as pushing him harder will yield greater endurance, but his fatigue at times makes it nearly impossible to push through a “workout” , so to speak. D Stand

He is doing well, walking around 30 minutes during a therapy session and also working on standing with gradually increasing independence.

(I thought I had actually published this update in December, but clearly had not, so here we are in January.)

Daniel is doing very well. He is walking more and more with his walker and wants to take it places and walk at times instead of using the wheelchair. This is great progress for him.

We have completed the transition to the new seizure medication, though are still tweaking the dosage as Daniel has had a couple more seizures (one on Christmas Day, seemingly unrelated to anything, and one a few days ago which we now know was related to the onset of the flu.) Getting the old medication out of Daniel’s system has been such a blessing. It is known for its behavioral side effects, and we have seen a significant improvement in Daniel’s demeanor and conduct since he has been off it. We feel in some ways that we have our sweet boy back. He is not melting down as easily and is demonstrating real willingness to cooperate and is trying hard to pull himself out of it when he is very upset or disappointed about something. This is very encouraging to us. We were getting pretty discouraged and worn down by his behavior and seeing the change after getting off the medication is a big relief.

Now, I will publish this long overdue post!