At 8 months of age Bayleigh experienced mild cluster seizures while awake. These typically lasted 5 minutes. An EEG revealed modified hypsarrhythmia. She was diagnosed with Infantile spasms/ West Syndrome at that time. An MRI noted a very small pineal cyst present. The spasms were treated with Adrenocorticotropic hormone (ACTH), and responded well. Bayleigh was wake-seizure free until the age of 3.
Bayleigh has met all developmental milestones within age appropriate time frames.
At age 3 wakeful seizures began again. An EEG noted abnormal left hemisphere discharges. These were treated with Keppra. Seizures were not entirely resolved.
A 24 hour EEG was conducted in Jan of 2011 and concluded that the left hemisphere of the brain is experiencing the majority of abnormalities, however, abnormalities are becoming more evident in the right hemisphere.
In May of 2013 Bayleigh began experiencing Grand Mal seizures as well as atonic/atypical absence seizures and generalized tonic clonic seizures. She was diagnosed with Lennox-Gastout syndrome. The Grand Mal started occurring every 1-2 weeks apart. Then progressively began occurring more often. The other seizures are daily.
In September of 2013 specialized care was sought through Johns Hopkins Medicine. They did not feel a special diet was an option for Bayleigh.
Currently Bayleigh is prescribed and ingests 25mgs B6, Onfi 15 mg, 1 1/2 tablets, Keppra 100mg,4 tablets twice a day. She is under the care of pediatrician Maria Chen, M.D. And neurologist Ralph S. Northam, M.D. At the Childrens Hospital of The King’s Daughters ( CHKD ).
Banzel has been recommended to be added to gain more control of seizure activity. And VNS therapy which is not an option for the family at this time.
With regards to relevant family history, Bayleigh had a male cousin with same diagnoses and medication profile. He passed away at 3 years of age.
Bayleigh is a delightful young girl. I am proud of how she has managed to keep her spirits up and a smile on her face day in And day out…