Raina Pearl Tilghman
Temporal Lobe Epilepsy
Raina Pearl Tilghman's Bio
Raina Pearl is now 9 months old. She took her first helicopter ride was to DC Children’s Hospital on 11/20/15 at 2 months old experiencing tonic clonic (grand-mal) seizures. After a week stay a clear MRI, two spinal taps and a full blood work up they still could not find a cause for her seizures. She was discharged 36 hrs seizure free with a diagnosis of temporal lobe epilepsy & on two anti-seizure drugs.
In December she had a VEEG which showed additional abnormal activity so a third pharmaceutical was added. On Christmas Eve she was in Johns Hopkins ER due to another cluster of seizures she was still too small for rescue medication to stop seizures at home.
January was a mild month with only 5 seizures all at home no hospital or ER visits. Full genetic test panel was also ordered to possibly guide our treatment plan.
In February she had another big cluster of seizures and spent six days in Johns Hopkins PICU, repeat MRI to see if they had missed anything, they had not. Discharged with a medication change adding phenobarbital which has proven and well documented adverse side effects, lower IQ and brittle bones are just two of many. Plans were made to begin the ketogenic diet in hopes that would bring some control and a reduction of pharmaceuticals.
By March she was big enough for rescue medication, diastat, for any seizure over 5 min. Mom got to administer that on the Baltimore beltway and in the grocery store both followed by 3 day admission to Johns Hopkins. Genetics results came back with no identifiable disorders, so still no reason for her seizures.
Hopes were here high that Ketogenic diet would work and she was admitted again to begin the diet in April. Unfortunately, she got worse before she got so control and was readmitted due to increased frequency and duration of seizures. Her medication was increased to maximum mg/kg for two of the three drugs.
May -she gave us a break and went 33 days seizure free during that time she got to attend her first bluegrass festival DelFest.
June the seizures increased again and the rescue medication was used at home. Then came a big cluster at the end of June she was incubated at the local hospital and flown back to Hopkins. She has been in PICU for 9 days; medications upped again and still having 8 seizures a day.
The family has fallen behind on all bills. Funds are needed to bring things up to date, cover medical bills and meet basic needs.
Please help this family in their hour of need. 100% of all donations will go to the care of these children.