Sara Rae was born July 13th 1992, a 6lb 4oz beautiful healthy baby, At 7 months old she was up on her hands and knees rocking back and forth , laughing and trying to crawl, saying mama, dada and baba. She went to the pediatrician at 7 months old for a check up and her DPT immunization, that was the last of being healthy my baby would ever see. Sara developed seizures right after, 20 the first day. They tested her for meningitis but it came back negative. They told me Sara was born this way, delayed with an onset of seizures. I tried to argue that there was no way she had been born like this! I had a perfectly healthy child and now had a 7 month old baby having 20 or more grand mal seizures a day and couldn’t even hold her head up anymore. We left the picu on phenobarbital and the nightmare of all the pharmaceutical drugs started.
No combination of any drugs has ever stopped Sara from having seizures. She has been on every medication that is on the market, we even tried experimental ( medications that weren’t available on market yet ) She had a corpus colostomy at the age of 5 which stopped the seizures for a short time, but left her with no speech, that was the last time I heard Sara say mama.
The seizures came back and the surgery didn’t work as well as we had prayed for. More medications, ketogenic diet, acupuncture, VNS implant, nothing has worked . She has been to many different neurologists, specialists, when one exhausted all avenues we’d look for a new one. She was diagnosed with LGS by her doctor at University Hospital, a rare and “mostly found in boys” uncontrollable seizure disorder.
We have watched Sara over the past 21 years go through so many horrifying, life threatening seizures, not knowing if she’d pull through! Falls from drop seizures, breaking her nose twice and her elbow twice. Sara is a trooper, she always finds a way and the will to push forward and keep going.
She started on medical marijuana 4 days ago and already we see a change! Only 1 seizure today and she really wasn’t effected by it, she came out of the seizure and went about her day like nothing happened, no long naps or crankiness. I think our prayers are about to come true.