•     Mickey
•     Emmett
•     Carter
•     Josie
•     Noah
•     Jim
•     Anastasya
•     Tina
•     Quinn & Will
•     Mackenzie
•     Jennifer
•     Kimberly
•     James
•     Kara
•     Ellie
•     Richard
•     Teresa
•     Owen
•     Katrina
•     Tami

Quinn & Will

Our story begins in 1998 when our son Quinn was 13 months old. He had what was determined as a febrile seizure. He had cold and had awoken from his nap with a very high fever. As I was carrying him into the other room he began to have convulsions. He was taken to the ER, where he had a spinal tap to rule out meningitis. Everything came back “normal” and we were sent home with him. It took a few days but he recovered and needed no further treatment. A few years past with no other incidences. But in July of 2001, at almost 4 years old Quinn woke up early one morning and crawled into bed with me and began seizing. Again he was taken to the ER. Unlike last time, he had not been sick was not running a fever. He had an MRI and EEG and all were “normal”. He didn’t have any additional tests or treatments and we were sent home with him with no explanation why he had the seizure.

A year later, our son William was born. When Will was about 4 months old he began to do some strange things. He would make strange jerking movements, like he was being startled. He also had some long staring episodes. I expressed my concerns to his doctor, but he felt it was nothing to worry about, but I knew something wasn’t quite right. As time went by these jerks and spells seemed to increase and he stop meeting his development milestones. By the time he was 9 months old he was having nearly 200+ “jerks”daily. And on July 31, 2003 he was diagnosed with Epilepsy. Immediately we began the long journey of tests and antiepileptic drugs (AED's) and therapy (physical, occupational, developmental and speech) and many many unanswered questions! All of Will's MRI's have been clear with no abnormalities of his brain structure. All of the genetic, metabolic, enzyme tests have shown no abnormalities. His EEG's reveal that his is having generalized seizures. He has been on 10 different medications and combinations of them and different dosage levels. Each medication or combinations seems to work for awhile, but then the honeymoon is over and his seizures start to increase again. We tried the Ketogenic Diet for a year and a half. Again we saw results in the beginning but they soon faded. We also tried the Modified Atkins, seeing initial results, but after he lost 10 lbs. (nearly a 1/4 of his body weight) most likely a side effect of his AED's, it was hard to keep compliant with the diet. Will is currently taking 4 AED's and still having at least 100+ clinical seizures (those that we can physically see ie. head drops or eye fluttering) daily, and that's a good day. He has recently become photosensitive and certain light stimulus has induced seizures. He experienced his first Tonic Clonic seizure brought on by sunlight flashing through trees while we were traveling in the car. He had 2 more Tonic Clonic seizures while trying to wean him off one of his meds. (Felbatol). We have seen four neurologist! and bee n given a diagnosis of Doose Syndrome, then Dravet (SMEI) then possibly some form of Photosensitive Epilepsy, nothing definitive. We can give it any name they want, it still won’t change the fact that we need to get his seizures under control. Will continues to receive physical, occupational, and speech therapy both in his special education classroom and privately. He still has difficultly walking and with his balance. He needs support in all physical activity. He lacks fine motor skills and is still unable to dress himself and has difficulty with most everyday tasks. Will is nonverbal. He uses guttural noises but no actual sounds. However his receptive language is good and he has a good understanding of directions. He understands how to use a computer and uses pictures to communicate his needs.


Then after you think you have a handle on all of it, life catches you by surprise! On June 19, 2007, nearly six years after his last seizure, Quinn has another! After feeling tired all day following a sleepover, Quinn fell asleep on the couch and woke up vomiting. His dad sent him into the bathroom. When Tom went to check on him, he was convulsing on the bathroom floor. The EMTs where called and Quinn was transported to the ER. In the ER Quinn went into status and was seizing for more 40 minutes. He remained in the hospital for 2 days and was sent home on Phenobarbital and with Diastat, in case he had another seizure longer than 5 min. One month later Quinn experienced another tonic clonic seizure and again was taken to the ER. During his hospital stays he went through a battery of test including EEG’s, MRI, and CAT scan, and Lumbar puncture. All tests came back normal. That October Quinn experienced another seizure. And just like all his previous seizure, this happened while he was waking up. This seizure was mostly likely caused by a change of medication. We were able to give him Diastat and he recovered at home within a couple of hours. Quinn has been seizure free since October 20, 2007. Our hope is that we will be able to wean him from his medication this October and that he will remain seizure free. But as we experienced before.…you never know when the seizures might return. We can never let our guard down

Epilepsy has touched our family twice and we live with it everyday. It affects every aspect of our life. Will is a very sweet boy whose smile lights up our world and his laugh makes our hearts sing. The joy he brings to our family is only dampened by the fact that our hearts ache every time he has a seizure. Every time we watch his little body "twitch" and each day that passes without relief from his seizures makes it that much harder for him to have a "normal" life. Quinn is a great athlete with a wonderful sense of humor and an infectious smile. He struggles in school, but has made great progress in the last year. Our oldest son Jack, who doesn’t have Epilepsy has had to watch both his brother suffer with seizures and it has been very difficult for him.

We hope that by sharing our story we can let people know that Epilepsy affects more then just the individual, it affects the whole family. That it’s not always easy to “fix” with medication and not everyone grows out of it and it can strike any family at anytime without reason or warning.

« back

 

WebMD