Diagnosis: Lennox Gastaut Syndrome (LGS).  In summary LGS is a severe and rare form of epilepsy that becomes apparent in early childhood.

His Story

At 7 months old Adam had his first seizure.  We didn’t think too much about it because he was sick with a fever at the time and overall a healthy baby boy.  Between ages 3-4 he would go on to have a handful more seizures.  An EEG showed abnormal brain activity and he was diagnosed with epilepsy and prescribed medication.  His seizures were controlled for the next two years and entering kindergarten we thought the worst was behind us.  At 6 years old his seizures returned with a vengeance and never let up.  For the next three years we saw multiple neurologists and tried multiple combinations of seizure medications but have not been able to get his seizures under control.  In March 2020 Adam was evaluated at Mayo Clinic in Rochester, Minnesota where he was diagnosed with Lennox Gastaut Syndrome (LGS).  In summary LGS is a severe and rare form of epilepsy that becomes apparent in early childhood.  LGS constitutes between 3-4% of all CHILDREN with epilepsy and 1-2% of all PEOPLE with epilepsy.  Those with LGS typically have several different types of seizures that are resistant to medication, cognitive dysfunction, behavioral issues, and a hallmark slow and spike wave pattern detected on an EEG.  Adam checks all of these boxes.

Those with LGS are at higher risk for SUDEP (Sudden Unexpected Death in Epilepsy).  LGS is classified as an epileptic encephalopathy in which seizure activity leads to progressive cognitive dysfunction.  LGS is always secondary to an initial condition (multiple causes).  Adam’s “initial condition” is unknown at this time despite multiple rounds of genetic assessments/testing.  There is no cure for LGS and he will require care for the duration of his life.  Most of the treatment options are palliative in nature; there are a few surgical options that can possibly improve the amount and severity of seizures.  His current neurologist has urged us to pursue a brain surgery called Corpus Collosum to help reduce seizure activity. 

While at Mayo Clinic Adam was diagnosed as Failure to Thrive and by March 2022 an NG tube was placed to help him gain weight.  After 6 weeks with the NG tube, outpatient feeding therapy, participation in a two week intensive outpatient extreme behavioral ABA program, and in home/at school ABA therapy Adam gained weight, learned to eat consistently and the NG tube was removed.  Adam’s seizure type has changed and evolved over the years.  In the last six months he has had more tonic clonic and “drop seizures”.  Drop seizures are any seizure that causes you to fall.  He has had multiple injuries from drop seizures; goose eggs on his head, stitches, hospital visits, etc.  In October 2022 he had a drop seizure onto the wood floor in our hallway. He landed face first and split open his chin, broke a couple teeth and suffered a hairline fracture to his jaw.  This required an ER visit, stitches, CT scans, and dental care.  On March 1, 2023,  he had a drop seizure on the tile floor in our kitchen.  He again fell face first with his chin breaking his fall.  He was rushed by ambulance to the trauma center at Children’s Hospital Dallas.  He had split open his chin again requiring stitches, broke his jaw in multiple places, broke out multiple teeth, and ruptured both ear drums.  His jaw required surgical repair and was wired shut for 2 weeks.  This required him to have a NG tube placed again so we could administer nutrition and his medications.  He was hospitalized for a total of 9 days and required outpatient follow up with plastic surgery, concussion clinic, oral surgery, and ENT.  He had a second surgery on 04/14/23 to remove the screws in his skull used to wire the jaws shut.  He remains on the NG tube and requires home health medical supplies.  This was a major setback to all the progress he had made with his weight gain and eating. 

Adam is currently followed by an epileptologist that specializes in LGS and also by a second neurologist who manages the psychological/behavioral piece as Adam is also diagnosed with Autism and ADHD.  Adam has participated in clinical occupational therapy, physical therapy, speech therapy, feeding therapy, and currently receives ABA therapy.  Adam receives ABA therapy in home and at school 4 days a week for 2-4 hours each day.  Although Adam is on a PPO insurance plan, the out of pocket expenses (deductibles) are quickly adding up and he has been declined for Medicaid coverage as a primary or supplemental insurance.  We are now in the process of purchasing a seizure dog for Adam.  Adam has slept with one or both of us for years due to the nocturnal seizures that happen off and on throughout the night.  The service dog will provide another layer of protection and will possibly allow him to sleep in his own bed again.  The seizure dog is costly and will not be covered by insurance.