Hi, my name is Daniel Macomber i work for the US ARMY. My wife Melissa and I have three children, our daughters Mersadies, 9 and Madison, 8 and a son Daniel, 4.
On December 2, 2009 our daughter Madison had her first seizure; she was only three years old. Madison's sister Mersadies was the first one to find her. Our little Mersadies came running into the room to tell her mom Madison was trying to throw up. I was driving to work when I received a phone call about Madison andI had a feeling I knew what was wrong by the way my wife explained it. When I came home Madison was doing fine, so we made an appointment to see the doctor the next day.
The next day, prior to her doctor appointment, Madison had another seizure while she was using the restroom at 5:45am. We were panicked and called 911. Madison was diagnosed with Epilepsy and has been prescribed many medications with the hope they would relieve the seizures to no avail. Seizures and epilepsy occur when part of the brain over-fires, disrupting its normal electrical signals. This can be a special concern in a child, because her brain is busy growing and changing.
Our daughter has been in and out of the hospital too many times to count and we were dependent on specialists to provide Madison with a confirmed diagnosis and to find the right medication to allow our beautiful daughter to lead as normal a life as possible.
One day when I came home from work, my daughter came running to me saying “Daddy!” and suddenly had a seizure. She fell and hit her head on a table so we now have a special helmet for her to wear due to the seizures coming on suddenly and frequently; she could barely walk at times or talk and would seize up to 150 times a day.
Madison is now 8 years old. She had a stimulator (Vagus nerve stimulation) placed in Her chest/neck which sends pulses allowing her some relief from the seizures. she also had a Corpus callosotomy, A corpus callosotomy is an operation that severs (cuts) the corpus callosum, interrupting the spread of seizures from hemisphere to hemisphere. Seizures generally do not completely stop after this procedure (they continue on the side of the brain in which they originate). However, the seizures usually become less severe, as they cannot spread to the opposite side of the brain. In Madison’s case this did not help. We received a diagnosis of Lennox-Gastaut syndrome. LGS is a rare and often debilitating form of childhood-onset epilepsy. The syndrome is characterized by a triad of signs including multiple seizure types, moderate to severe cognitive impairment. LGS constitutes between 1-4% of pediatric epilepsies and typically appears between the second and sixth year of life.
Most children are typically developing normal when first diagnosed, but then begin to lose skills, sometimes dramatically, in association with uncontrolled
seizures. Young children with LGS may exhibit behavioral issues, personality disturbances, mood instability, and slowing of psychomotor development. Behavioral disturbances can include poor social skills and attention seeking behavior, which can be caused by the effects of the medication, difficulty interpreting information, or the electric disturbances in the brain. Some children with LGS are prone to develop non-convulsive status epilepticus (a continuous seizure state that is associated with a change in the child's level
of awareness). This requires medical intervention to bring it to an end.
Children with LGS experience acute psychotic episodes, forms of psychosis with aggressiveness, character problems, and irritability. Cognitive problems include slowed reaction time and information processing. The main characteristics of mental deterioration are reported as apathy, memory disorders, impaired visuomotor speed, and perseverance.
School-age children are usually placed into a special education classroom or will receive home tutoring. Parents and caregivers may need to consider future options for their child, including legal guardianship, respite care, group home facilities, and/or day programs. For those individuals with LGS who do not have adequate neurological services in their state of residency, an out-of-state facility is suggested. Level 4 facilities (facilities which provide intensive neurological services, elaborate evaluations and treatment options) are typically recommended if the local neurologist or epileptologist does not have experience in treating Lennox-Gastaut syndrome.
The prognosis of Lennox-Gastaut syndrome can greatly vary from person to person. Complete recovery, with freedom of seizures and normal development, is unusual for a
child with LGS there is no cure for LGS
For the past 5 years, I have been deployed to Afghanistan for 12 months and have spent weeks away each year for routine Army training leaving my wife to drive to Nashville with all three children to Vanderbilt Children’s Hospital from our home in Fort Campbell, Kentucky for Madison’s treatment and surgeries. She manages Madison’s appointments, medication, test results and reports, medical history and milestones, reviews internet research and journal articles and manages our expense records as well as providing a daily routine for the children’s school and after school activities. Melissa has had to leave her job to ensure proper care is given to Madison and to make certain our other two children have the time and attention they need as well. Melissa spends many months during deployment caring for our children without assistance as our family is not close by. She has been an inspiration to everyone showing how her love for her children can allow her to juggle all of the responsibilities with having a child who requires extra care while providing a stable environment for our daughter and son.
There are economic challenges which include difficulties with doctor’s visits, medications, tests, and other treatments that might be required as well as the cost to travel to Nashville for lengths of time and the lodging needed when Madison is admitted.To add to our Plate, we also have to deal with cumbersome, bureaucratic, irrational, and often unsympathetic medical, school, and state or federal aid systems! Fortunately, the military assists with her medical costs, but as you know, my salary does not provide for all the care she may need going forward.
In case that is not enough, there are the long-term challenges and concerns that keep us up at night worrying.
- What are the long-term effects of having seizures and taking antiepileptic drugs?
- Can epilepsy shorten the lifespan Madison?
- What will happen when Madison becomes an adolescent?
- Will Madison be able to go to college and live independently?
- Will we be able to financially provide for all of Madison’s needs so she can live the best life possible?
Madison deserves everything in life but there will be many things that she will never get the chance to do. I want to be that person that can make her dreams come true in life. Any contributions made will be responsibly used to care for our daughter and provide the best possible care. It is very hard to give everyone in our family the care and attention they require, but somehow we make it happen. Melissa is a very amazing mother and she is the Glue that holds this family together.