Johnny’s service dog

Hi, my name is Danielle Pearson and I’m Johnny’s mom. Last year March 30, 2020 Johnny was in ICU for five days after having his first seizure. They did an MRI and did not find anything on his brain causing him to have these episodes. We also did a genetics test and nothing was found on either side of the family. From that point on Johnny was seizure free for about seven months, until the end of November 2020. His neurologist decided to hospitalize him the month of December to check his brain activity due to him having episodes again. Before we were sent home he was prescribed a second medication to try and control his brain activity. Since then he continued having several a month. In May 2021 Johnny was admitted back into St. Mary’s hospital for another 48 hour EEG. The doctor felt like Johnny was STILL failing the two medications he was put on called, Keppra and Vimpat. Before leaving he was then put on a new medication called Depakote. As time went on Johnny continued having multiple seizures a week. I decided to get on Joe Dimaggio’s waiting list for a second opinion because of seeing the great reviews. We were seven months out from being seen there. I said to myself in the mean time what can it hurt getting another opinion from Nicolas Children’s. Johnny was then admitted into Nichola’s childrens for five days on August 26th, 2021. They did another video EEG, Blood work, a four hour test on his motor skills, learning, and a two hour thorough MRI. After evaluating him they said all around this greatly effects his academics and how he retains information. We were sent home for them to review and come up with a plan moving forward for Johnny after being seen by three different neurologist that specialize in all different areas. They called to finally let me know what they came up with and said Johnny has something called ESES which stands for “Static Epileptic Slow Wave Sleep”. His brain activity is over stimulated which causes him to have brain spikes every second throughout the day. In each minute his brain activity is at 95 percent. Since this August Johnny has been hospitalized five more times for his seizures with another change to his medication. He is now on sympazan and prednisone. Johnny went from having focal seizures to now having Grand mals multiple times a week. We currently can’t even send him to school with how unstable his seizures are. To have your child go through something you can’t fix let alone control is the absolute most gut wrenching feeling. We try to be hopeful with every suggestion the doctor gives us but then we’re right back at square one with Johnny failing medications. Watching him go through this time and time again, just feels like my heart is slowing being ripped out of my chest. The repetitive testing, being glued to a hospital bed monthly, poked at, missing school and falling behind, and having to go through the constant changes from the medicine effecting him mentally and physically. I pray everyday that we can get this under control, but even if there is no ending to this nightmare I will always be standing right behind him for whenever he falls.

 

My reason for writing this is to raise money for a Seizure Service Dog for Johnny. The dogs are trained to alert Johnny and anyone around him that a seizure is coming on. The dog can retrieve medicine if I or someone else can not leave johnnys side during a seizure. The service dogs are trained to help use themselves as a barrier if Johnny has convulsions so he doesn’t hit his head, as well as roll Johnny over on his side if he starts to seize to prevent suffocating. The dog will go to school with him and give me peace of mind knowing that they can sense it before it comes on to alert for help. As of right now, Johnny is sleeping in my bed every night because I am a nervous wreck to leave him in his bed alone but the older Johnny gets, how am I supposed to continue this? We need to find a balance of normal with whatever that will be. Having a service dog will give me a little peace of mind and independence that Johnny will look for the older he gets. The process for a service dog is extensive especially one that specializes in seizures. The wait time is up to a year due to the training and once we receive the dog we will have to learn the cues ourselves. The company we decide to go with specializes in service dogs for Epilepsy. Due to the amount of training that goes into the service dogs, they are $30,000. No insurance company will cover any bit of the cost as it is looked at as a choice. Johnny’s doctors explained that at this point they believe it would be in Johnny’s best interest to have a service dog due to his seizures being unpredictable and uncontrollable thus far if we are able to fundraise the money.