He was told not to swim, bike, skate as well. He was never to be in the shower or bathe without a parent in the room. His seizures were mostly in sleep, at first. Caution was necessary, the doctor felt, to keep him from injury if he seized or had a reaction to medicine while doing these activities. Can you imagine an active 8 year old being kept from the things his world revolved around? How would you parent such a child, and try to give him a normal life as well?
When Sam was first diagnosed, I hovered around him, on the school playground, at the doorway to his room while he slept, while he bathed. I tried to be ever present, trying to avoid another seizure. I found he was miserable with these constraints. I was weary from the pressure. He had to undergo all kinds of doctor visits, incessant blood work, restrictions, medicine which made him ill and angry, EEG?s and MRI?s.
We found a better way to deal with this illness and find a quality of life. Sam is an active guy, with endless energy. He has a talent for gymnastics and climbing. He has a knack for reaching out and touching people’s hearts with his wit and hugs. He has a compassionate soul and is easily wounded for himself or others. Mostly he is all 11 year old boy!! He likes to be active, build creations, and be treated like any other boy. He has found that people do not always do this. Other kids who have known him all of his life, can not understand the changes in him. Other parents either belittle his troubles or try to exclude him. It is hard to find a happy medium.
Sam’s seizures still occur about 2-4 times a month. He can have more if he is sick. His school work is disrupted on seizure days. He finds it very difficult to understand things on those days and is impaired in writing then, too. He also has trouble with frustration and anger control after a seizure. He needs flexibility to adjust subjects and tasks on those days to get through the school day. He also needs to have someone watching him to keep him on task. I feel blessed to be able to school him at home and make those accommodations. It has been difficult to meet these challenges, and keep him on track for learning, but well worth the effort. I can see first hand when he is medically more fragile and needs a different approach. I do not feel a regular classroom could meet his needs and everyone else’s too.
In the year 2000, Sam changed medication 5 times and dosages at least a dozen times. Each time we have to make a change it takes Sam 6-8 weeks to fully adjust and we can then see if the new medicine will work for him. He has now been on Zonegran a year. All anti epilepsy drugs(AED?S) have the potential for depression, behavior problems, liver damage, kidney stones(Zonegran alone), weight loss, weight gain, drowsiness, dizziness, irritability, sleep problems, academic problems, nausea, blurred vision, blood disorders, coordination problems, memory trouble. This paints such a grim picture when someone with epilepsy also deals with the symptoms from the seizures which include, academic challenges, behavior problems, uncontrolled anger, memory lapses, sleepiness, irritability, dizzy spells confusion and more.
Fortunately new treatments are being found to ease symptoms and give those who have epilepsy full productive lives.

(The above is the letter that I wrote to give to Congressmen and Senators during Kids Speak up in , in 2002. I had the children write their books which are posted on this site as well. Below is the path we currently are walking on)

In January 2002 our Neurologist said it was time for Sam to go to a comprehensive Epilepsy center to be tested to see if he is a brain surgery candidate. There is a pointed horror that goes through a mother's mind as a doctor utters these words. I knew from the compassion in this neuro's voice that he wanted only the best for Sam. He was deeply concerned that the seizures were not under control, the severe impacts they and the medications have had on Sam's learning. He also noted the behavioral problems which the medications have incurred. It still was very difficult to process this. Looking as if he had not heard, was my highly intelligent 10 1/2 year old son. I can not imagine what images reeled in his mind. I went home and scoured the internet for information, weeping at what the testing entailed in the latter, invasive stages.
We had to get through his academic testing first, I had told the Neurologist. We had waited for 3 years to get this done and it was my priority. It took several months for all of that to be processed and we found, as we believed so strongly, that yes he had several learning disabilities.
We entered into the testing process for brain surgery candidacy with open minds and hearts. Sam was dead set against it. I talked at length to him that we needed this and just the testing might enable the doctor's to treat him better. He was such a trooper through it all. First an 8 day VEEG with only abnormal slowing, and one brief tonic hand movement in sleep, that was seizure like or related but not long enough to help. We were sent home, off medication with orders to call and they would whisk him right in when he seized. 6 Months later we were allowed back for 2 days when our Neurologist called them to get him back in soon. The Neurologist had wanted us to proceed with this testing but felt that a swift return to medication was necessary. SO the one specialist felt he had too many seizures to stay off medication, the other specialist felt he had too few to continue. We did this for 10 months without being allowed back in again. We were told the seizures were not close enough together and "he is doing so well." The stress of living with bags packed, wondering when we would go back, wondering if he was being harmed while off medication, was crippling at times. We also had to make arrangements for Anna who was schooled 30 miles from home, to stay up there should we have a sudden admission. He did fairly well with school since the medication was gone. We really saw the impact on seizure days, often having lost cognitive abilities for up to a week after some of them. We finally got back in for an 11 day VEEG after 10 months on hold. This too has left us with more questions than answers. The one answer is that we are no longer on the path towards surgery. The Epileptologist was inconclusive, but he told us he felt he would outgrow them at puberty. He did tell the Neurologist that Sam has "outgrown" seizures, though he had them before testing and has now had several since. I have met so many who have had similar challenges and they have been a great help to me. Epilepsy Foundation of America has an ecommunities; they are my precious E family. IF you need support go there and you will receive support and information. We will continue with our Neurologist and watch what happens this next school year. We may seek a second opinion, but would like to wait on that and not disrupt another year of school. His seizures are not progressing right now, we have 6-8 week breaks and then will see a few in one week. He still has mostly secondary generalized seizures in his sleep and a few simple partials in the day.
We may not have answers, but we are not done looking. We are so fortunate that Sam's seizures are mild enough that he is continuing to stay off medication at this time. We pray that God truly is healing him now, but also know God will strengthen us to walk down this path no matter what happens. Sam is in 7th grade and is 12 1/2 at the time of this writing…..

 

KidSpeak Up, 2002. Congressman Rob Simmons