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Life on a Rollercoaster

As a family, we have ridden all types of rollercoasters. They are some of our happiest times…with one exception….the epilepsy rollercoaster. Life on the epilepsy rollercoaster has extreme highs followed almost immediately by the deepest lows with a few twists, loops and drops (pun intended) thrown in just to make sure we can feel our hearts beating. 

The past several months have been our wildest rides in some time. We started making some medicine changes in January.  Since Nolan is so sensitive to changes it has been a long process. There were a few ups and downs through the Spring, but we made it to summer and he was able to go to camp. He had the time of his life at Epilepsy Camp in Texas! Despite the ridiculous heat, he rode horses, kayaked, climbed rock walls, rode zip lines and slept away from us (which is extremely rare). Seeing his smile in pictures was just like being at the top of Expedition Everest on a clear blue day! Hands in the air, thinking “it can’t get better than this!” But as they say, what goes up… 

Within weeks of coming home, he hit a low we haven’t seen in years.  It started with quick seizure clusters as soon as he would wake up. Then, out of the blue he started having full drop seizures and hitting his head on the ground below him. He went from having fun and freedom at camp to being on the couch for most of the day in order to stay safe. The twist this time….he stopped talking and was wandering around aimlessly at times. He went through a pattern of couch days with a few “able to participate in activities” days, but never really was himself. We decided to take him in for an emergency eeg to see what was going on. He had an eeg in May and after comparing the two there really wasn’t much difference even after almost doubling 2 of his medicines. Clearly they weren’t helping him. 

We decided to take a ride on a different rollercoaster and tried a new medicine. The twist this time…it is the first medicine we tried after his first seizures over 10 years ago, but stopped because of the side effects.  He has been given relief from some types of seizures, but we are still constantly on edge waiting for the next loop.  You know that feeling where you know there is something up ahead that will make your stomach drop? That is our state of mind pretty much 24/7.  We are seeing side effects like 10 years ago, but knowing more seizures could be the alternative if we make a change is unbearable.  All we can do is hold on tight enough to make it through the next twist. This epilepsy rollercoaster…..10/10 would not recommend.

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What is Allhands Life?

It can be all consuming trying to keep Nolan safe. At times it feels like we always have a hand on him to prevent a seizure with a hard fall or a hand out to help cushion a fall onto a hard surface from a seizure. Being there all the time is just not realistic. Early on in Nolan’s journey we realized that we needed another “hand.”

That is why we created Allhands Life….to be the extra set of “hands” for caregivers and those living with epilepsy. We are nearing the final stages of our protective mat to help cushion sudden seizures onto hard surfaces, but a product is only part of our mission. We want to create a community to share the good and the bad, the laughs and the tears, the struggles and the solutions. No one should have to go through this alone. And sometimes just hearing what others are going through can help make you feel a little less alone. It can also help pull you out of a funk and realize you are going to keep fighting! I’ve been on both side of these scenarios. Having a little hope that what worked for someone else may work for your child, or hearing “you got this!” can do wonders for your spirit!

So with that, I will be going way outside of my comfort zone and begin blogging about our life with epilepsy. The real stuff. It is not always easy to share what is really going on day to day with with Nolan and the struggles he endures. Sometimes it is just easier to highlight the good days and move on, but I’ve realized that just doesn’t help anyone understand what he (and we) go through.

Feel free to chime in if you or a family member are also battling against the beast that is epilepsy. I promise you are not alone. We’ve got this!!