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2/8/2017 Latest post:
I would like to introduce you to one of my hero’s; my 16 year old son Aaron Joshua (AJ) Cameron. One morning in 2007 AJ had a grand mal seizure; our lives have not been the same since. We were living in South Mississippi at the time and were rushed to the emergency room in Hattiesburg where doctors there were unable to determine the cause of the seizure and referred us to a local neurologist.
AJ continued having seizures several times a week despite being put on keppra, an anti seizure medication. The local neurologist ordered EEG’s, MRI’s, CT scans and lots of blood work. We went over family history looking for anyone that may have had epilepsy; there is no one. He has had no major head trauma, he was born full term and healthy, no complications. While we of course did not want anything to be wrong with our child we did want an explanation. To this day we have not found one.
The neurologist we were seeing then referred us to Batson Children’s Hospital in Jackson, MS when it became apparent that there was not a direct cause for AJ’s seizures and his meds were not effectively controlling his seizures.
Our first appointment at Batson was scheduled a year out.
In the meantime he endured increases in medication, numerous EEG’s, MRI’s, CT scans and blood work several times a month, every month. Due to the amount of seizures he was having and the side effects caused by the medications he missed a significant amount of school, almost the entire last month of his 1st grade year.
And yet he excelled in school and was placed in the gifted program.
Over the next 7 years AJ went through more of the same; continually changing medications, monthly MRI’s and EEG’s, weekly blood tests and lots of missed school days. He faced and stood up to bullying at school and administrators attempting to have him transferred to an alternative school because they didn’t know how to deal with an exceptionally intelligent child with special needs. He played and loved pee-wee football until he entered junior high and had to quit because of his medical condition.
And still he endured and maintained an amazingly positive and open attitude! He learned everything he could about epilepsy and was more than happy to tell anyone who would listen all about it. He was selected to attend Saturday Gifted Studies at The University of Southern Mississippi, and joined the competition archery team at Baxterville School. He used to say I’m just a kid like my friends I just have seizures sometimes that’s all.
Once he was finally able to get into Batson Children Hospital the doctors there ordered extended EEG testing. On a couple of occasions he spent at week on bed rest at the hospital hooked up to EEG electrodes and was taken off of his medication to induce seizures. This enabled the doctors to narrow down the area of the brain that seizures were coming from but not pinpoint it, and still they could find no cause.
During this time we were connected with the Epilepsy Foundation of South Mississippi and AJ was able to attend the Alvin P. Flannes Summer Camp for 3 years. He thoroughly enjoyed his time at camp saying that it was “awesome to just play and have fun without having to explain about epilepsy. All the kids are just like me, they have epilepsy too!”
In 2014 Josh; AJ’s dad; was put on medical leave and temporary disability from his job with an offshore drilling company so he could have shoulder surgery. When his temporary disability benefits ran out and his doctor released him to return to work the company fired him stating that he was now a medical liability. We decided it was time to return to my home in Alaska and start over.
We knew that medical care for AJ might be a challenge with Alaska being so remote however we have found that the only pediatric neurologist in the state is an amazing doctor! We were able to start seeing him right away and after our first visit he informed us that AJ and the rest of his family have been dealing with this for way to long and we were going to start looking into surgery.
Dr. Smith referred us to Seattle Children’s Hospital right away. Like Batson it took us almost a year to get that first appointment at Seattle Children’s.
We have now made several trips to Seattle for multiple specialized tests. Including a week at Seattle Children’s for an extended EEG, traditional and functional MRI’s, CT and PET scans. Most recently AJ had a SPECT scan performed at Harborview Medical center where he was injected with a radioactive isotope during a seizure. The radioactive isotope emits gamma rays that can be detected by a CT scanner. All these tests were performed in the hopes of pinpointing the exact location(s) his seizures are starting.
His case was reviewed by physicians at the Northwest Epilepsy Conference this past fall and it was decided that he is a candidate for grid placement surgery.
That is where we are now.
AJ’s grid placement surgery is scheduled for Feb. 9th.
The neurosurgeon and epileptologist will place a metal grid on the surface of AJ’s brain with electrodes attached to it. Following the initial surgery he will be moved to the intensive care unit. The electrode grids will remain in place for several days and AJ will be taken off of his medication to induce seizures. The electrical activity in his brain and seizure activity will be monitored to specifically define and confirm the area of seizure focus. Cortical mapping will also be done while the grids are in place to help relate seizure location to motor, speech and sensory function areas of AJ’s brain.
Several days later, when the doctors have collected enough data he will have a second surgery to remove the grids and possibly remove the area of identified seizure focus. He will be in ICU for a few more days before being moved to a patient room and then released to go home a few days after that.
If the collected data requires more study before they are able to remove the point of seizure focus from his brain he will require a third surgery in a few months time.
And still AJ’s attitude is amazing!
He is excited and ready to go. He is very optimistic and looking forward to a successful surgery which will allow him to discontinue some of the many medications that he is on, join the rifle team at his high school and hopefully achieve 1 year seizure free so that he can learn to drive!