Welcome to Nolan's Crew!
Nolan was a typically developing boy and then out of the blue he had a seizure on March 1, 2013, two weeks before his 4th birthday. He then had a second seizure 2 weeks later and then a third seizure on Easter Sunday 2013. Within a few months he began to have daily seizures. Here is a recap of everything Nolan has been through in the past 4 years:
At our first neurology appointment in April 2013, we started Nolan on anti epileptic medications, but struggled to find one that worked with minimal side effects. After trying 7 different medications, we worked our way up the chain of doctors to the Medical Director of the Pediatric EpilepsyProgram at Children’s Colorado. In December of 2013, we finally got a diagnosis. Nolan has Doose Syndrome. Doose is an early childhood onset type of epilepsy that is often resistant to medication. With his syndrome anything can set off seizure activity in his brain, therefore utilizing drugs is like trying to hit a moving target. What might show some signs in working can stop working as quickly as it started and without warning. In 2014 Nolan had thousands of various types of seizures on a daily basis ranging from Absence (blank stares), to Myoclonic (upper body jerks), to Atonic (full body drops) and all the way up to Tonic Clonics (Grand Mal). Watching him go through this is the most difficult thing that we have ever done. Upon receiving his diagnosis we tried a strict high fat/extremely low carb diet that has been successful for many kids with Doose. Unfortunately, after 3 months on the diet Nolan was still having daily seizures. We stopped the diet and the tweaking of medicines continued throughout the remainder of 2014 with some horrendous side effects. While weaning him from a highly addictive medicine that never worked, Nolan had a drop seizure and knocked out his top front teeth. His daily seizures became much more intense, and although he was able to start kindergarten, he never made it through a full week of school the first semester.
In December of 2014, as we were weighing our options for alternative therapies, Nolan’s neurologist suggested another medicine that she has seen work with kids that have Doose. We decided to give it a try, but were cautious since so many medicines have not worked for him. We soon began to see slight improvement, but because we were having to wean another of his medicines at the same time, it was hard to tell if the new one was working. The weaning process is always very tough on Nolan. It wasn’t until he had been off of his old medicine for 2 weeks and on his new medicine for about a month, that we saw drastic improvements. This was perfectly timed with a trip to Disney World! The weeks leading up to our trip were so tough on Nolan that we actually considered cancelling. Fortunately, we did not and the day we left for Florida his seizures dropped from nearly constant to less than 10 a day! There is something to be said about that Disney Magic! His seizures were 99% gone and we seemed to have our Nolan back. For two months, Nolan was daytime seizure free (the nighttime seizures seem to be so difficult to get under control). As quickly as they disappeared, the daytime seizures returned at the beginning of April 2015. He became sick repeated with tonsillitis and swollen adenoids. We decided to have them removed at the end of April and hoped that it would get him back on track with seizure control. Unfortunately, it wasn't the quick fix that we had hoped for. His seizures became more intense and longer. The summer was filled with numerous seizures and several visits to the ER when we could not get the seizures to stop with medications at home. We changed and added medicines starting at the end of the summer and through the fall with only minimal relief. It seemed that we were getting nowhere and were becoming more frustrated.
Last Spring, we decided to look for another doctor for Nolan. Our search led us to a well known epileptologist at Texas Children's Hospital in Houston. With several personal recommendations and numerous online recommendations, we were miraculously able to get an appointment. The doctor recommended a device called a VNS (vagus nerve stimulator). Nolan had a VNS implanted in June 2016. It is implanted in Nolan's chest with a wire running up his neck along his vagus nerve. It is like a pacemaker implanted in Nolan's chest with a wire running up his neck that sends regular pulses through his vagus nerve to his brain to hopefully train it to stop seizing. We also have a magnet that we can wave over the device to start a pulse if he is having a seizure. We do not feel that we have seen the full potential of the VNS, but we were told it could take time. Our doctor in Houston is now in Phoenix and just last month made another VNS adjustment and gave us hope that it could still work.
Overall, Nolan is much better now than when his seizures began. His seizures seem to follow a steady pattern and he rarely misses school. As an added bonus, he almost always has a smile on his face which helps us a great deal! Nolan is now 8 which means that he has been having seizures for half of his life. This is hard for us to imagine, but no matter what, we will continue our fight for him until we reach our ultimate goal...seizure free!!!