The Day Our Lives Changed Forever...
In the middle of May, out of nowhere, Will had his first seizure. Terry and I had no clue just how much our lives were getting ready to change.
Soon after that day, Will's pediatrician sent us to Riley Children's Hospital for an EEG. It took less than twenty minutes into the EEG for Will to have over ten seizures! Before I knew it, the technician was calling the ER. After other tests were done, it was confirmed and Will was diagnosed with generalized epileptic seizures and WAY too many of them! The doctors immediately began pumping him with medicine.
We were told that most children with epilepsy were able to find relief with medicine, so we were very hopeful. We started Keppra that day, but after a month nothing was changing...actually it was getting worse! We were now seeing over forty seizures a day and they were now lasting longer than before. Five months later we are still in and out of hospitals, having countless tests performed, and trying many different types of medicine to try to give him relief. Unfortunately we were unsuccessful. The doctors increased our amount of Keppra and also started Will on Depakote. At this point, Will was having 50-60+ seizures a day and was literally slipping through our fingers. We started him on Clonazepam and, within a couple of days, he was drooling and was more lifeless than we had ever seen him. Needless to say, we stopped that drug pretty quickly!
Back to the drawing board...more scans and longer EEGs confirmed that Will has Idiopathic generalized epilepsy...meaning that there is a strong underlying genetic basis for his seizures. Patients with an IGE subtype are typically otherwise normal and have no structural brain abnormalities. We also found out that when Will seizes the seizure occurs all over his brain and not in one focused area (meaning he would not be a good candidate for surgery).
He had just begun kindergarten, and it was not the experience we had hoped he would have. His seizures exhausted him so much that he was not focused at school or any other time really, and he could hardly stay awake. His teachers are amazing and would let him rest whenever they could see that he had had enough. At least once a week I would have to come pick him up from school in the middle of the day because he had had so many seizures that he was literally passed out. He was embarrassed that people would see him having a seizure... so our once social butterfly child began to sit on the sidelines, didn't want to play, and just kept to himself. This was not our child...we were losing him and we felt like there was nothing we could do!
There has to be something else we can try, right? This cannot be his quality of life now! When Will started to lose control of his bodily functions, we knew we were past that point. Will was diagnosed with refractory epilepsy (meaning that anti-epileptic medication would not control his seizures) and we set up our first appointment with the neurology department at Cincinnati Children's Hospital known for their specialized treatment in epilepsy.
At our first meeting with the neuro team our treatment plan was immediately set into full speed motion! Will was immediately checked in to the hospital where he began the rapid discontinuation of the three medications he was currently taking. He was started on Felbamate and the Modified Atkins Diet (MAD). Thank goodness these changes took place during our hospital stay... drastically weaning off anti-epileptic drugs caused Will to have all sorts of medical issues (stronger seizures, more of them, acidosis, vomiting, etc), so we were very happy to have the help of nurses and doctors!
After working with the MAD for a couple weeks, it unfortunately was not enough to reduce the number of seizures Will was having. To better Will's chances, he was moved to the Ketogenic diet at a 2:1 ratio. In just over a week of being on the Keto diet, Will's seizures began to decrease and soon was having seizure-free days (for info on this check out our blog page)! We were thrilled! After months of searching, cramming medicine down his throat with no results, Will was finding relief! His energy levels began to increase, he wanted to play again, and more than anything, he wasn't scared anymore.
Will's journey with epilepsy has been the hardest thing our family has ever had to experience. I have never had such an overwhelming sense of helplessness, and been in a constant state of fear for one person in all my life! We pray constantly that God will work a miracle in his life and cure him. Until that day comes, we feel so blessed that God sent us the Ketogenic diet! We know we are in God's Will and that he has a plan for us and Will. Remembering to be patient and knowing it's in His time is hard... but God gives us the strength we need to make it through another day.
**UPDATE** - After three years of dedication to keto, we have been able to wean Will off! I can't believe I'm even saying this! The keto diet did it's magic in retraining Will's brain to accept medicine. Will is so excited to begin eating normally again and we have so much extra time on our hands now that we aren't prepping for hours a week! Of course...we would do it again in a heartbeat if he needed it!
Soon after that day, Will's pediatrician sent us to Riley Children's Hospital for an EEG. It took less than twenty minutes into the EEG for Will to have over ten seizures! Before I knew it, the technician was calling the ER. After other tests were done, it was confirmed and Will was diagnosed with generalized epileptic seizures and WAY too many of them! The doctors immediately began pumping him with medicine.
We were told that most children with epilepsy were able to find relief with medicine, so we were very hopeful. We started Keppra that day, but after a month nothing was changing...actually it was getting worse! We were now seeing over forty seizures a day and they were now lasting longer than before. Five months later we are still in and out of hospitals, having countless tests performed, and trying many different types of medicine to try to give him relief. Unfortunately we were unsuccessful. The doctors increased our amount of Keppra and also started Will on Depakote. At this point, Will was having 50-60+ seizures a day and was literally slipping through our fingers. We started him on Clonazepam and, within a couple of days, he was drooling and was more lifeless than we had ever seen him. Needless to say, we stopped that drug pretty quickly!
Back to the drawing board...more scans and longer EEGs confirmed that Will has Idiopathic generalized epilepsy...meaning that there is a strong underlying genetic basis for his seizures. Patients with an IGE subtype are typically otherwise normal and have no structural brain abnormalities. We also found out that when Will seizes the seizure occurs all over his brain and not in one focused area (meaning he would not be a good candidate for surgery).
He had just begun kindergarten, and it was not the experience we had hoped he would have. His seizures exhausted him so much that he was not focused at school or any other time really, and he could hardly stay awake. His teachers are amazing and would let him rest whenever they could see that he had had enough. At least once a week I would have to come pick him up from school in the middle of the day because he had had so many seizures that he was literally passed out. He was embarrassed that people would see him having a seizure... so our once social butterfly child began to sit on the sidelines, didn't want to play, and just kept to himself. This was not our child...we were losing him and we felt like there was nothing we could do!
There has to be something else we can try, right? This cannot be his quality of life now! When Will started to lose control of his bodily functions, we knew we were past that point. Will was diagnosed with refractory epilepsy (meaning that anti-epileptic medication would not control his seizures) and we set up our first appointment with the neurology department at Cincinnati Children's Hospital known for their specialized treatment in epilepsy.
At our first meeting with the neuro team our treatment plan was immediately set into full speed motion! Will was immediately checked in to the hospital where he began the rapid discontinuation of the three medications he was currently taking. He was started on Felbamate and the Modified Atkins Diet (MAD). Thank goodness these changes took place during our hospital stay... drastically weaning off anti-epileptic drugs caused Will to have all sorts of medical issues (stronger seizures, more of them, acidosis, vomiting, etc), so we were very happy to have the help of nurses and doctors!
After working with the MAD for a couple weeks, it unfortunately was not enough to reduce the number of seizures Will was having. To better Will's chances, he was moved to the Ketogenic diet at a 2:1 ratio. In just over a week of being on the Keto diet, Will's seizures began to decrease and soon was having seizure-free days (for info on this check out our blog page)! We were thrilled! After months of searching, cramming medicine down his throat with no results, Will was finding relief! His energy levels began to increase, he wanted to play again, and more than anything, he wasn't scared anymore.
Will's journey with epilepsy has been the hardest thing our family has ever had to experience. I have never had such an overwhelming sense of helplessness, and been in a constant state of fear for one person in all my life! We pray constantly that God will work a miracle in his life and cure him. Until that day comes, we feel so blessed that God sent us the Ketogenic diet! We know we are in God's Will and that he has a plan for us and Will. Remembering to be patient and knowing it's in His time is hard... but God gives us the strength we need to make it through another day.
**UPDATE** - After three years of dedication to keto, we have been able to wean Will off! I can't believe I'm even saying this! The keto diet did it's magic in retraining Will's brain to accept medicine. Will is so excited to begin eating normally again and we have so much extra time on our hands now that we aren't prepping for hours a week! Of course...we would do it again in a heartbeat if he needed it!