Anita Campbell
County Reporter
While most eight-year-olds are anxiously awaiting fall parties and trips to the pumpkin patch, little Lovely Henderson of Edwards is lying in a hospital bed at Children’s Mercy Hospital Adele Hall in downtown Kansas City. Lovely has been diagnosed with refractory frontal lobe epilepsy with generalized seizures.
According to her parents, Holly and Matthew Henderson, Lovely was a perfectly healthy eight-year-old ten weeks ago and then suddenly the seizures started.
“We were told for several weeks that it wasn’t seizures but behavioral issues but after an abnormal EEG and persistence on my part, they finally admitted her and the long EEG indeed showed 30-40 seizures in a 24-hour period,” said Holly Henderson. “For ten weeks straight, she couldn’t sleep more than 20 minutes at a time without waking up having a seizure. The exhaustion caused more seizures and the seizures caused exhaustion.”
Frontal lobe seizures are the hardest to diagnose and treat. The medications the doctors tried have not worked. After her third admission to the hospital, the doctors started looking at WHY she suddenly started the seizures. Some tests are still pending, but the ones that have come back are normal.
At the beginning of Lovely’s illness, her parents were told it wasn’t seizures, she was being treated for PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). Most of the medical professionals will not acknowledge it as an illness. It is encephalitis caused by an illness like strep or pneumonia that lies dormant in the body and comes out causing sudden symptoms such as OCD, tics, seizures, suicidal tendencies, and behavioral issues.
According to Holly Henderson, parents need to take illnesses such as strep very seriously and allow their child to fully recover.
The doctors started IVIG and currently Lovely is in a Pentobarbital Coma to reset her brain and give it a rest. She had so many seizures for so long that the background activity wasn’t slowing down in her brain.
“My little Lovely was struggling with extreme seizures and unfortunately her brain was not responding to the final meds to help in between seizures,” said Matt Henderson. “With her heart rate consistently getting very high and repeated seizures, we finally decided she had to have some rest. Lovely was put into a coma, pic line put in, intubated, and feeding tube in place. She will get rest for at least 48 hours and we are praying the good Lord will give her brain the rest she needs to heal.”
“The doctors are starting to wean her down every six hours,” said Matthew Henderson. “Coming out of the coma will depend on if she has break through seizures as she comes out. The doctors can only drop the coma-inducing drug a little at a time so this could take up to 12 to 24 hours.”
Holly Henderson has been with her daughter continuously.
“We are humbled by the community with the outpouring of prayers and concern,” said Holly Henderson. “Her friends from South School, church and sports teams have gone out of their way to reach out. She can’t wait to be back at school with her friends and watch the Wildcats Basketball teams play this year”
“Thank you for all your prayers and support,” said Matthew Henderson. “The community’s support has meant the world to us from the volleyball girls saying a prayer before their game to the many, many messages, texts, calls and monetary help we have received. All of this support has been encouraging us.”
“We are trusting in the Lord to take care of her and give her relief from the seizure activity,” said Holly Henderson. “She is perfectly Lovely.”
